This is a long post, but I'm publishing it all at once, because I really want to keep the information together. You may want to bookmark this post because even if you don't have these problems someone you know or love might need this information.
Looking back over my entire life, there had been glaring clues that I might have an AI issue (I'm going to use AI from now on just as a shortcut). Diagnosed with Anemia from my early childhood, Chronic Constipation and Bowel Immobility since I was a toddler, Chronic Eczema that covered my hands up to my elbows and feet up to my ankles, most of my childhood, teens and early adulthood. About 6th grade, a lengthy outbreak of Chicken Pox that looked like smallpox and Mononucleosis that took me out of my last semester of my Freshman year of High School. (I slept about 19 hours a day for months)
I had several very scary and strange occurring illnesses that caused partial numbness and paralysis for a period of several days, not long after I would have the flu or a virus. I remember falling down the stairs when I was in Junior High when my leg gave out on me without notice. I was plagued with fatigue that was abnormal. I would be ok for several weeks, then collapse in bed for a day or two to just recover from "life" or stress.
My first pregnancy was iffy when I spotted every month until my second trimester. My second baby was a very difficult pregnancy and she was delivered 5 weeks early. I had to have a Hysterectomy when I was 30 because I would have a 10 day period every 2 weeks that I couldn't get off the couch because the flow was so heavy. Then when I was about 38 the extreme fatigue came to a head with a diagnosis of Hashimoto's Thyroiditis. This is when your body attacks the Thyroid tissue and begins to destroy it. Thyroid meds never seemed to work well, but it was better than before the diagnosis. Hashimoto's is a real indicator that a person has AI, but no one ever mentioned that to me or asked questions concerning other possible AI illnesses. Then in my mid 40's I started having headaches and odd dizzy spells that felt like the room was spinning out of control. Going to bed for the rest of the day was the only thing that helped. Gastric issues became increasingly worse. After a meal, I would feel like I was going to explode even if I ate very little.
Then came the Heart Disease which was a complete and utter surprise. My only hint was that the hill I walked with my husband every evening was becoming impossible. He would have to pull me up the sidewalk till we reached the top, then I would be fine. I had 3 heart attacks in one weekend. My life changed forever and everything else about my health took a backseat to dealing with it. Nothing was as important as that diagnosis. To the doctors, Heart Disease was the cause and answer to anything else I might have questions about.
Almost 5 years ago, I had several heart attacks once again because of several blood clots that have still not been clearly explained. Then about 2 and a half years ago I started having dizzy spells everyday. I would be so dizzy that I'd have to sit down on the floor in hopes of avoiding falling over. My cats would stare at me like "Mom? what's your problem?" (my kitties talk, don't yours?) I would discuss it with my husband and we figured this was a manifestation of my heart issues, since that was getting worse. Like I said, everything was blamed on heart problems.
In May of 2016 I had a new heart procedure that took care of my major heart blockages, but it was a lengthy procedure under anesthesia, with a boatload of blood thinner. I emerged from that with less heart pain, but severely anemic and within a few days feeling like I was having a nervous breakdown. My neck hurt, my head was killing me, and I felt like I'd been hit by a massive truck. I just chalked how I was feeling up to different meds and the trauma I'd experienced during the 4-5 hour procedure. But it didn't get better, it just got worse.
I found a new Primary Care Physician and she was pretty thorough, but we headed the route of looking at my neck, seeing several neurologists, having MRIs and CT Scans and injections. I remember her saying that first appointment. "You know, about half of people who have dizziness never find out what is causing it." I said that wasn't going to work with me, that I had to find out because it was just getting worse. I tried several pain meds, but there's only one that works for me. It dulls the pain, but never made it go completely away. The meds would stomp it down so I could get out every once in awhile to be a "normal" person, but it was always looming over me. I vowed that I would find the answer. My daily prayer was, "God please, tell me what is happening... tell me what I need to do to get better."
At that same time my joints, especially my wrists and right hand, started swelling and becoming very painful. My left hip pain, that had been manageable before, became more and more painful. I started having ulcerations in the lacrimal ducts of my eyes, nose and mouth. I was thirsty all the time and no matter how much water I drank my mouth was always dry. I felt like someone was strangling me. My eyes felt like they had sand in them, and I couldn't wear my contact lenses anymore. Then the swelling and cysts in my Lymph Nodes, sweat glands, and ALL my lubricating glands (if you know what I mean). That really started to scare me and knew something really weird was happening.
The worst was the headache and neck pain; it was relentless and never went away. It wasn't a migraine, but the pain was just as debilitating. I started doing research not long after my heart procedure. I Googled and looked up everything on neck and head pain and was presented with 4 possible categories of causes... Trauma (Injury), Bone problems with Vertebra, (which I did have some degree of), Bacterial or Viral Infections, or AutoImmune Disease. ...what?
I asked my PCP to test for Lyme Disease and any other tick born illness, because when we lived across from the lake I'd have a tick bite at least once a season. All those tests came back negative, so we moved on to other ideas. As I navigated the list of AI illness I kept seeing one subject over and over... that was the incidence of Gluten Intolerance with literally ALL the AI illnesses. They all had Gluten as a common denominator. I didn't know much about Gluten, and what I did think I knew, was inaccurate.
You may remember that I realized it was Gluten that was causing my headache and neck pain after a day that I was in severe pain, worst headache in the world pain. I had eaten deep dish pizza the night before and it was obvious that it was the culprit. I got off of Gluten, and started feeling better little by little, but that wasn't the end. My symptoms were generally better, but the extreme fatigue, joint pain, depression, even the headache, was still there.
I again started researching all the AI Diseases and started a board on Pinterest with all my relevant information. I talked to my Primary Care doctor and she agreed... it sounded like some kind of AI illness to her. But which one? There are over a hundred. Here's the list. The first test to ask for is an ANA test, it will show if you have some kind of AI general problem. It's not specific, but it is a general indicator of the problem. It's not the end all confirmation, each illness has antibodies that need to be checked. Mine was positive, showing a "mid-way" marker.
You want to hear the funny thing? I discussed this concept of my headache and loss of mobility in my neck as being AI with 3 Neurologists, one Surgeon, one Neurological Interventionalist, one Orthopedic doctor, a Vascular Internist, and even a Rheumatologist. I didn't have the antibodies that the Rheumatologist was looking for and even though I tested positive for Rheumatoid Arthritis, she wouldn't treat me or accept me as a patient. I was disgusted and so disappointed in the Medical Community. My Hospital Network is having problems, and Rheumatologists are virtually nonexistent. No one would help me, not even my PCP which agreed with me about what I was dealing with. (she said she didn't have the experience with it.) I'm not new to this situation, as I'd had to navigate all the problems with my heart and cardiologists.
An indisputable confirmation for AI showed up with my new Injectable Cholesterol medication, Rapatha. No matter that I was watching my diet, and following the protocol, my Cholesterol was rising and the $1500 a month medication that I considered a magic bullet, caused an AI reaction of stinging, itching whelps and blisters. That was out, and I had been counting on it doing a miracle.
So I've realized the majority of my heart problems throughout the last 15 years have been caused by AI Inflammation and a Hereditary Genetic mess of issues. When someone has heart disease you have accusatory fingers shaking in your face asking you how long you've been smoking. I kid you not, I was in the process of having a heart attack and the first cardiologist was making fun of me and shaming me about a nicotine addiction in the ER. He didn't shut his mouth until I told him my dad had just died from heart disease. I've never forgotten the anger, hurt and insult that caused me. Smoking is the worst cause, but inflammation can come from many things; food allergies, and sugar and fat among them. Now I realize it also comes from untreated AI problems. Not only does the AI cause inflammation which is the predecessor of heart disease, but it actually causes your Cholesterol to rise. Usually the AI Disease is diagnosed first and then the doctors are on vigilant watch for any possible hint of heart disease. They are doing whatever they can to help keep Heart Disease at bay. Not so the other way around. Even the first Rheumatologist said, "Wow, you have a really bad heart disease problem." ah, yeh. She was the same one that wouldn't treat me. This was last July. It's gotten worse this last 9 months.
I got on a waiting list for a Rheumatologist near here. She has a reputation for being experienced and openminded. She looks at the entire patient and knows how to diagnose, "outside of the box" patients. It took me 7 months to see her. Seven months of getting worse everyday.
I got on a waiting list for a Rheumatologist near here. She has a reputation for being experienced and openminded. She looks at the entire patient and knows how to diagnose, "outside of the box" patients. It took me 7 months to see her. Seven months of getting worse everyday.
My particular main illness is Sjogren's Syndrome. On the surface it seems pretty mild. Dry mouth, dry eyes, but what people (and most doctors) don't understand is that it affects every organ of the body... anything that needs moisture can be attacked. You can read about it here. There are a lot of commercials about "dry eye" right now, but if you have it, be sure to check out the other indicators of Sjogren's Syndrome. You may be experiencing just the tip of the iceberg. 9 out of 10 Sjogren's patients are women, diagnosed at any age.
So yes, I'm on my soapbox and wanting everyone to know about AutoImmune Disease. It is like a smoldering fire that can become a conflagration without notice. It can sit there in silence and bide it's time for years, and you won't know or recognize it; you or the doctors. My body was slowly corroding, when the Heart Procedure traumatized my body and caused what they call a "Flare". A sudden worsening of symptoms due to some over stressing of your body systems.
So yes, I'm on my soapbox and wanting everyone to know about AutoImmune Disease. It is like a smoldering fire that can become a conflagration without notice. It can sit there in silence and bide it's time for years, and you won't know or recognize it; you or the doctors. My body was slowly corroding, when the Heart Procedure traumatized my body and caused what they call a "Flare". A sudden worsening of symptoms due to some over stressing of your body systems.
Since Christmas I've been made aware that a reoccurring Bladder infection was due to a Strep B infection caused by "Leaky Gut Syndrome and Gluten". Then the hip pain wasn't really my hip at all, but undiagnosed Degenerative Disc Disease of my Lumbar vertebrae. The discs have collapsed because the Synovial Fluid has been leached out by the Sjogren's Syndrome; a nerve is pinched or infringed because the bone is pressing on it.
My new Rheumatologist looked at the whole picture and started me on a medication called Plaquenil, which is the first one that is prescribed for Sjogren's patients. Many people say it's brought back their quality of life and taken down their joint pain. There are a few side effects, but I'm willing to give it a good try. As an added benefit, it's getting noticed for adding moisture back into calcified arteries of Heart patients, making them more pliable. I need that. The genetic factors from a family line of early heart attacks and death caused Atherosclerosis in my arteries. I've read where it can start in teenagers when there is Hereditary Cardiovascular Disease.
When it comes to AI Disease, there are so many that have much worse symptoms and prognosis. It's just amazing that these diseases are so numerous and pervasive, yet most Primary Care Physicians don't know much or anything about diagnosing them, let alone treating you for them. The Neurologists were the worst. When I started talking about Gluten Intolerance and AI Disease their eyes glazed over and they patted me on the head. Gluten is the match that lights the AI fire. I've read in many articles that as many as 99% of people with Gluten problems do not realize it and are undiagnosed. That's because Gluten not only effects your Digestive System, but can effect the nerves in other parts of your body, Migraines, Anxiety and Depression, Brain Fog, joint pain, skin diseases, Psoriasis, Eczema etc.
Please read my previous posts on Gluten and why it's so important if you have thyroid problems to be aware that it is a huge factor in ANY AI illness. If you have any CHRONIC illness or symptoms please read up on how Gluten could be a factor. It will open your eyes and you WILL be willing to adjust your diet to be rid of the illness and pain. You will not get this information from a GP or specialist. Gastrointerologists know that Gluten is the cause of Celiac Disease, but unless you have all the blood work and very invasive procedures to prove it, most times you're out of luck. They just say you have IBS. If you have that diagnosis please get off gluten and milk for awhile and see if you can feel a difference, it could be Celiac Disease and not just IBS.
The doctors in the US are trained to give you a medication for what ails you. Very rarely do they want or have time to get down to the core issue of what it is that's causing your illness or pain. You have a 15 minute chance for them to figure it out; if it's not glaringly simple they will throw a prescription at you and ask for the nurse to bring in the NEXT patient. It's up to you to be informed about possible causes, that's where you and Google come together. Start researching, keep a notebook, and be diligent. Don't be afraid to ask the doctors questions or bring up possibilities. The doctors just do not have time or the inclination to figure it all out for you.
I've been on my new medication for a month now, and it's very slow going. Fatigue is one of the major symptoms of Sjogren's and most other AI illnesses. It's been like having a mild case of the flu for the last 2 years. I can see small improvements, but this is trying to take on a lifetime of inflammation and destruction.
Some have wondered why I've kept on blogging if I've felt as bad as I have, and I will tell you this... I HAD to have something normal about my daily life. I've needed to stay busy and try to be creative, and to be doing something that I enjoyed. There have been times that it took me forever to put together a post, and it may not have been anything exciting. But I just needed to stay functioning. And as far as sharing all this with you, it's a tough call. Some people don't talk much about their health issues because people don't necessarily want to hear it.
But I have said from Day 1, I will keep things real here.
Because I want to be the kind of person that can share information on what they've been through if it might help someone else. It's taken me two years to get a diagnosis, but years of illness.
So, now I ask you... have you experienced anything similar? Do you have an Autoimmune Disease?Have you had a diagnosis, or are you still trying to navigate an illness without medical or family support? Let us know... you're not alone.
Please read my previous posts on Gluten and why it's so important if you have thyroid problems to be aware that it is a huge factor in ANY AI illness. If you have any CHRONIC illness or symptoms please read up on how Gluten could be a factor. It will open your eyes and you WILL be willing to adjust your diet to be rid of the illness and pain. You will not get this information from a GP or specialist. Gastrointerologists know that Gluten is the cause of Celiac Disease, but unless you have all the blood work and very invasive procedures to prove it, most times you're out of luck. They just say you have IBS. If you have that diagnosis please get off gluten and milk for awhile and see if you can feel a difference, it could be Celiac Disease and not just IBS.
The doctors in the US are trained to give you a medication for what ails you. Very rarely do they want or have time to get down to the core issue of what it is that's causing your illness or pain. You have a 15 minute chance for them to figure it out; if it's not glaringly simple they will throw a prescription at you and ask for the nurse to bring in the NEXT patient. It's up to you to be informed about possible causes, that's where you and Google come together. Start researching, keep a notebook, and be diligent. Don't be afraid to ask the doctors questions or bring up possibilities. The doctors just do not have time or the inclination to figure it all out for you.
I've been on my new medication for a month now, and it's very slow going. Fatigue is one of the major symptoms of Sjogren's and most other AI illnesses. It's been like having a mild case of the flu for the last 2 years. I can see small improvements, but this is trying to take on a lifetime of inflammation and destruction.
Some have wondered why I've kept on blogging if I've felt as bad as I have, and I will tell you this... I HAD to have something normal about my daily life. I've needed to stay busy and try to be creative, and to be doing something that I enjoyed. There have been times that it took me forever to put together a post, and it may not have been anything exciting. But I just needed to stay functioning. And as far as sharing all this with you, it's a tough call. Some people don't talk much about their health issues because people don't necessarily want to hear it.
But I have said from Day 1, I will keep things real here.
Because I want to be the kind of person that can share information on what they've been through if it might help someone else. It's taken me two years to get a diagnosis, but years of illness.
So, now I ask you... have you experienced anything similar? Do you have an Autoimmune Disease?Have you had a diagnosis, or are you still trying to navigate an illness without medical or family support? Let us know... you're not alone.
xoxo,
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Oh my goodness, I just happen to find your blog today,, I was just diagnosed with Hashimotos and my doctor told me diet had nothing to do with it,, I had been doing some searching myself and I told him what I had read,, I feel he is letting me down, I have no confidence in him at all, I have nodules and cysts in my thyriod and I feel gluten makes them worse,, and when I eat dairy! i found your story very helpful , thank you for sharing and I hope to goodness you are on the road to recovery,, I'm so sorry you suffered so much,
ReplyDeleteHi Laurie, No one had EVER mentioned that Gluten might be a trigger with Hashimoto's. It's just outrageous that doctors are so uninformed and stubborn with this information. I have a link if you'd like to check it out about Gluten and Hashimoto's. https://chriskresser.com/the-gluten-thyroid-connection/ Both of my daughters have it also. I just hate that they've grown up with all of us not knowing this. Hope you follow your own judgement on this.
DeleteI too was finally diagnosed with lupus (five years ago) and Sjogren’s (two years ago after a lifetime of illnesses and nine surgeries. I also had two miscarriages in my twenties and a total hysterectomy at age 28. My story is so similar to yours. Even after three TIAs and coding in the hospital before surgery not one doctor really seemed to help me. Each one treated my PARTS but not me as a whole person. There is not a day that goes by in the last five years where I have been pain free. My DNA tests, X-rays, cat scans, MRIs and ANA markers show the diseases and confirm that my symptoms are not in my head. Through all this, I earned three college degrees, volunteered for several organizations, taught full-time, and was a part time radio rock and roll DJ. Four years ago, I retired from almost everything because of the degenerative changes in my spine, neck and joints. But I had to have some outlet so I became a part-time antique dealer with a lot of assistance for my husband. My friends ask me how I manage. My life has been full of CREATIVE AVOIDANCE in order to keep my sanity and find joy somewhere —somehow. Maybe if I had been really healthy, I would have wasted a lot of my time instead of spending it wisely. Thank you for your inspiring post. You are not alone. I don’t talk about my illnesses very often because conversation then becomes negative and depressing. When I am really in pain, I stay home and do as little or as much as I can and try to accept my limitations. Frustration and depression are something I have had to really fight off this winter. But with my husband’s help, I still plan to maintain my beautiful garden. May God bless you and help you find the grace to accept and the strength to find peace in your life.
ReplyDeleteI'm so glad you left this note, thank you so much! We've been thru so many of the same things. One thing that really stands out is that no one really cared about figuring out the problem or getting to the reason. When I saw the first Rheumatologist I had a phone picture of my lacrimal duct ulceration. I had had the same thing in my nose, mouth, and vagina. She asked me if I'd seen a doctor about my eye. I asked her if I was supposed to have gone to a separate doctor for each area of my body that had an ulceration/cyst. She said well that's a bad infection. I had to break it to her that it wasn't an infection and that she was the doctor I should be seeing for a "systemic illness". I left that office dismayed, then cried all the home. I'm so glad you've had a full life and that it didn't take you down completely. The heart damage I have has really caused me so much trouble. I had to give up my antique business in 2013 when I was starting to have the blood clots. Thank goodness I had blogging, because it helped me cope. take care and I'd love to see your garden!
DeleteI feel your pain. I am at the beginning of my journey now. I am so disappointed in the medical community. I am still searching for a doctor who will order the tests. I can't even get them to do a full blow thyroid panel, yet my TSH has went from 1.28 to 0.59 in one year. I may be looking at Grave's disease if I can ever get the tests. I am not sure I have your persistence quotient. You give me motivation to keep fighting! Hoping to get some answers soon.
ReplyDeleteHoping you feel better now that you have gotten to the root of your problem.
Hi Diane, I had a period of time a couple of years ago that my TSH started going down, like yours. I checked all my supplements and vitamins and found almost everything I was taking, including B12 suppletments, had Iodine in them. All of them together it was way too much. It looked like I was going into HYPER, but my T3 was actually almost nothing. Be sure you have your T3 checked also. Doctors here don't always check it. While you're trying to get your doctor on board, you might cut out all extra Iodine that might be tilting your thyroid. Thanks so much for leaving a comment. I hope you get this figured out soon. That drastic change really threw me into a wild ride.
DeleteYour journey navigating the medical system has been shocking - It's mind boggling that the doctors of today willingly allowed you to suffer so much through the years. I also have had several health issues which doctors could not explain and were not the least bit interested in finding the root cause. It's all so frustrating and stressful. Thank you so much for this post and I hope the healing continues for you.
ReplyDeleteyou're so right, mind boggling. I don't understand how ANY doctor could NOT be doing any kind of research on their specialty. It just doesn't make sense. I really don't know how some of them sleep at night. You should see the vast wasteland in the field of cardiology. So many of them are just not interested. I've been written off over and over. I hope things are going well with you now. thanks so much for leaving a note.
DeleteThank you for this post, I know it had to be trying for you to recount it all. God bless you for your persistence!! You rule!!
ReplyDeleteI've been facing similar issues with my health and not interested doctors. I've been sick for 3 months now and in constant pain, which no one can explain. It all started with a mild heart attack in January followed by diverticulitis and pain in the shoulders neck and upper back. I just finished another hospital stay where they removed the fluid around my left lung. No one knows nothing and I don't know where to go next. This entire Winter has been wasted, and I'm frustrated!!
I also do a lot of research and bring up issues to my dr. with no results. Finding a new dr. is next to impossible, but I keep trying.......
Best wishes to you!!! xoxoxo
Oh I know exactly how you are feeling. Sometimes I feel like the last 5 years have been stolen from me. Ask your doctor if he could do some blood work to check for possible Autoimmune problems. It’s really hard for a dr to disregard a request that might possibly be legitimate. I’ll be praying for you and for answers. Please take care of yourself. No more heart attacks. Xoxo
DeleteThis post is so full of valuable information and comments. Thank you, Debra, for showing how we each need to advocate for ourselves, and for documenting your journey. I am definitely saving this, for myself and my siblings. I hope this new relationship with your rheumatologist proves you have a real solution this time. I didn't realize all the history from childhood.
ReplyDeletethanks for being a good friend and sounding board, Rita! I always so appreciate your thoughts and point of view!
DeleteOh my goodness. THANK YOU for writing of your experience. I too have discovered the dangers for myself of gluten. I will pray for you, asking God to direct you and the doctors in your care.
ReplyDeleteTeresa
thankyou Teresa, for some of us Gluten just is a poison. Glad you found out how it was affecting you! take care!
DeleteI have Hashimoto's and Diabetes. I also have back and joint problems, attributed to my long nursing career. Since the first of this year I have been suffering from major fatigue several days a week, attributed to wine.This is an eye opening post. I also suffer from dryness most areas. This I attributed to age and meds. Interesting.
ReplyDeleteI'm hoping you're doing ok with your Diabetes. I know how many issues can come along with that. Thanks so much for stopping to share your own story. take care of yourself.
DeleteThank you for sharing your story. I hope the new medication brings you relief.
ReplyDeleteIn 2010 I had a terrible flu and developed joint pain that worsened after the flu was gone. The pain was so bad that after sitting for only a few minutes my joints hurt so bad it was hard to even stand. After months of testing and several doctors I was diagnosed with Psoriatic Arthritis. For many years I was on Methotrexate for the joint pain, Folic Acid to compensate for the side effects of the Methotrexate and pain medications. Two years ago I started following the Eat to Live plan by Dr Furhman. My joint pain has decreased significantly and I am off the pain medication. I tried going off the Methotrexate but my psoriasis flared up. The change of diet has helped so much with the joint páin, now if I could find a natural way to control my psoriasis I would be so happy" I also take Levothyoxine for my thyroid and would love to someday be well enough to not need it, although I’m told that you can never cure ÿour thyroid problems. I find dealing with the medical field very frustrating and wish more emphasis was placed on natural solutions instead of expensive drugs that cause major side effects.
I wish you well on your health journey.
Hi Kathleen, thanks so much for sharing how you are managing your health. Glad you've found a diet that works well for you. So many people have so many individual health issues that require different approaches. I'm with you about drugs and side effects. It's so problematic that most doctors won't even listen when we find something that could help so many additional people. take care, Debra
DeleteBless your heart. All that is terrible and the bad part about it is we have to take our health in our own hands and study up on all this. I had lots of tummy issues, lots of test later I looked at my doc and asked could it be as simple as IBS....and he said that was all that was left. Later I read that IBS is an overactive colon, which is controlled by overactive nerves. It is believed that Fibromyalgia is also due to overactive nerves. I have fought that daily for 13 yrs now and with each passing yr it gets worse. Meds....and essential oils help keep me off pain meds but I know the day will come. I got to the point that I hated going to the doc for fear something else would come up...and it always did. Thank you for sharing.
ReplyDeleteHi Pam, I don't know if I mentioned it (I've said so much lately, ha ha) but I feel like Fibromyalgia is actually a low grade autoimmune illness. Fibro is found in most all AI diseases, I have it also. But until you get tested for AI you may never know. There might not be antibodies to any one illness, but you might have a low "titer" on an ANA test. You might ask your doctor to test you if you haven't yet. take care, glad you have your health plan and it's working.
DeleteYou have been through so very much just to get some sanity back. Sometimes I think doctors do more damage than help. My mother is 89 and still driving her small pickup truck. Her doctor back in the early 90's wanted to put her on some medicine for replacement of hormones. She had read in her health magazine that this medicine was associated with cancers. When she told her doctor no, he said he gave it to his wife and he wouldn't give her anything that was dangerous! His wife died within a year or two, the doctor died 5 years later...my mother takes vitamins and skips doctors now and she's going strong at 89. You just never know what is right for you.
ReplyDeleteI love hearing about your mom, sounds like you have some great genes to work with! Sometimes we just KNOW what is best for us, despite the doctors best efforts to "cure" us.
DeleteHi, I sure feel your pain. I was diagnosed with MS about 20 yrs ago and the subsequent years have been a struggle more days than not. Just a few weeks ago I was struggling with extreme fatigue again so my new Integrative Medical Doctor ran an EBV (mono) test. I was shocked when it was positive because I don't live a lifestyle where that was thought of before I guess. My sister says I've probably had it for years and it flares when you have stress, other illness, etc. So you might consider having that test the next time they do blood work.
ReplyDeleteI also struggled for years with vertigo/dizziness. Each doctor I asked about it said "that isn't a symptom of MS". Not much interest in helping me figure it out but it severely limited my life. My Doc sent me to a physical therapist to see how my legs were doing. After a couple of minutes the dizziness made some of the exercises difficult and she asked me if I had been to an ENT (Eye/Ear/Nose/Throat. No, I had not so she told me to make an appt right away. He FIXED my "vertigo" in about 5 minutes with an adjustment!!! I was furious for a very long time because of all the time wasted that no other Doc had been interested enough to consider that! But finally I'm just glad that it is gone now (one adjustment 4 yrs ago) But you might want to just see an ENT for an evaulation.
Lastly my sister has become an expert in autoimmune illness trying to find a way to help me. She really thinks EVERYTHING begins and ends with our guts. It might take a while to find a way to eat that will work for you but everyone is different and "gets their own kit" so most of this will be up to you to sort out. The doctors that can really make a difference are really few and far between. We have to be our own advocates. Thankfully I have my sis to keep track of this for me.
She has been recommending a book recently that gives you a lot of info. It is Medical Medium: Secrets Behind Chronic and Mystery Illness and How to Finally Heal
by Anthony William. She has found many answers using the directions in this book which is available on Amazon.
Good luck on the search for good health and don't give up the fight!
Hi Jan, so glad you've had some help along the way and that your sis is helping out with good advice. I'm interested in hearing about your "adjustment" that you received that took care of your vertigo. I was given a work-up from a doctor when I had a assessment at Physical Therapy. He assured me it wasn't Positional Vertigo (BPPV) or Meniere's. My husband has Meniere's and has had to have surgery to get his fixed. My vertigo was due to Gluten Ataxia, where the nerves are inflamed are raw causing occipital neuralgia. Since I've been off Gluten last June, it has diminished considerably. Headaches and dizziness are a symptom of most AI illness, and MS is included in that category. I pretty much agree/ with your sister's ideas on Leaky Gut and food and diet. I don't eat processed food, Dairy, Corn or Gluten, so I've pretty much gotten rid of the food/diet issues, except for the fact that the Sjogren's has taken away my appetite. As for the Epstein-Barr Virus, I did have it severely when I was young, but I don't know if it's still active or if I have antibodies. Thanks for letting me know about the book, it sounds like it would have some great content. thanks for sharing with us! take care of yourself!
DeleteI am SO glad you have found an answer, and are starting to be treated competently!
ReplyDeleteMy thoughts are with you!
thanks Bobbie, I'm so grateful, I'm hoping it will be a good relationship.
DeleteThank you for sharing your story. Be sure to check out Dr. Amy Myers books--she has so much great info about thyroid issues (she struggles herself) and how to heal with food. I have similar issues due to lyme and her diet is a game changer. Good luck with your journey!
ReplyDeleteHi Amy, I've read Dr. Myers blog and some of her articles, I'll have to check out her books. Right now my diet is so limited and sometimes food just turns my stomach. My sense of taste and smell has been altered. thanks so much for visiting, I appreciate the info.
DeleteOh Debra, bless your heart! Thank you for sharing this, helps me feel not so alone. I was diagnosed with Wegners Granulomatosis 10 years ago. On Methotrexate injections weekly along with prednisone for years. The damage I’ve suffered- heart problems, two pacemaker/ defib implants, clots in my lungs, kidney disease, eye problems, drug induced diabetes, Virtigo, dermatitis, I could go on and I’m so tired of this. The number of different doctors and specialists I’ve been to is terrible. I’ve even been to The Mayo Clinic! Your story and your thoughts on what you eat being a culprit is so interesting. I watch what I eat due to diabetes. Now the new med I’m on has me nauseated and dr says stay on it for two weeks and should subside! I started blogging 3 years after my husband had 2 strokes when he was 57 and that was 12 years ago. I have not felt well enough to blog in a year. Just so happened I wanted to ck my blog out and saw your post! God bless you dear Debra. Thanks for sharing your story.
ReplyDeleteHugs,
Nancy Comer
Hi Nancy, its so nice to hear from you! sounds like you've really been through it. It wears you out not only physically but mentally and emotionally also. Hard on the family also. I hope you're feeling better soon. Much of the time food just makes me feel yucky, not much appetite. That's so different for me. Thanks so much for taking the time to leave a comment, glad to know you're still out there!
DeleteYou and I have shared a lot of info and feelings about our medical issues and the medical profession as well. I hope this post helps at least one person to question their doctor when the answer is vague, do their research, and TALK about it.
ReplyDeleteLike you, I've willingly tried a good number of meds in hopes of a nugget of relief. Sometimes we need to do that. And being proactive is also key. I admire you for being that sort of person, and I think you deserve to get better and live 100% free of pain and worry.
Sending a big hug, dear lady,
Jane
thankyou so much Jane. It's so good to have people we can open up with and actually share important information. There is so much benefit in knowing that friends are having similar issues, because we can encourage each other. I know you've had a long journey also. You always amaze me in all that you accomplish. You're posts are always filled with your wit and amazing creative personality. Thank you for being a good friend, stay strong and here's to enjoying our life, no matter what.
DeleteHello dear friend, thanks for this informative post. Please link up at TFT things this coming week.
ReplyDeleteI do want to stress that the ELISA test from Lab Corp that PCP give is negative in 90% of late stage Lyme. This is why I was undiagnosed for 25 years. You must be tested by a Lyme Literate Physician with the IGENEX lab tests. These are the only tests that are sensitive enough to pick up Lyme. It takes up to 8 weeks to get the results because your blood is cultured and goes through many different types of tests for the DNA of these critters. What the PCP does is check for a basic antibody. After years of being infected your body will no longer produce a strong enough antibody to test positive in the generic tests. Autoimmune is real, but often set off by the underlying myriad of undiagnosed infections that the body is constantly fighting. Lyme bacterial bore into bones, tissues, gut, and organs, and can cause ALL autoimmune diseases. I am not cured, but my quality of life only improved after treating the Lyme, everything else for 20 years was dead ends and frustrating visits to doctors, disabling illnesses not responding to medications only making me sicker. Always praying for you my friend.
Hey Friend! yes, I've considered this and even spoke to the new Rheumatologist about this. She felt that I'd probably had AI my whole life since I was dealing with the undercurrent and heart problems long before the possibility of Tick borne illness. It's funny though, that I had 2 rounds of antibiotics that lasted about 20 days, and I felt so much better all over, (even the headache) afterward. Hard to know exactly, even though it was given for the Strep B infection. I think there are so many people out there suffering with Lyme effects that are never diagnosed and treated. I'm keeping that information at the forefront in case symptoms aren't improving. It's so scary to think that this can be so invasive and deep seated. Thankyou for always being there and sharing your wealth of information to help me move forward. you're the best, Amber!
DeleteThank you so much for sharing this! You really have been through the wringer! I totally empathize with you as I was diagnosed with Lupus in my 20s, and now at the age of 60 I’ve been diagnosed with an autoimmune neuromuscular disease, Myasthenia Gravis. Ive also recently tested positive for Rheumatoid Arthritis, which my Mother also had and my daughter does as well, so there’s definitely a genetic component there. After reading your post here I am definitely going to eliminate gluten from my diet and see if I improve! Again, thank you for sharing your experience. I’ve had to go on an antidepressant for the first time in my life to cope with all of my symptoms and the pain and depression they cause me. I will say that has helped my mental outlook. I’m on several other medications as well, which all help my AI diseases to a certain degree. My daughter takes plaquenil for her RA and it has been very helpful. It took several months for it to be effective for her however, which I’ve read is common. I hope you get much relief as well.
ReplyDeleteHi Laura, thanks so much for sharing what you are dealing with. It certainly does run in families, as you can attest to. I know what you mean about depression, the illnesses and symptoms take a toll on a person's outlook. Take care of yourself, I hope that you stabilize and feel better, soon.
DeleteOH I so hear you, Debra. With lupus, Sjogren's, and Hashimoto's myself, I feel your pain. I went gluten free many years ago, too. Two of my kids have celiac disease and other AI issues so we are in it together. Getting off gluten was like night and day for my digestive problems (including a bowel perforation that nearly killed me). I tried Plaquenil, but didn't tolerate it well, so I am thinking of finally breaking down and giving Methotrexate a trial. I hate taking meds because of all the side effects I get, but you have to try something. I really hate the Sjogren's...it affects everything. Restasis does help me when my eyes get too bad. Blogging has helped me have some sense of normal through all of it, too. I had to give up doing vintage shops and shows because it made me so sick, and I did love that career. And I admit to cutting back and am even thinking of retiring from blogging soon, too.
ReplyDeleteI can't imagine having heart disease on top of it all...God bless you, Debra.
Reading all these comments makes me realize I am not alone...xoxo
Hi Linda, gosh I'm so sorry, I didn't realize you had all this AI going on. I know Lupus can be so debilitating. Like you, I really did enjoy the whole antiques and vintage business. I was exhausted by it, but I still miss the fun and camaraderie of being involved. (we can still shop though). For anyone who thinks changing diet is too hard to do, we know the dramatic difference cutting out gluten can make. take care, friend. I understand about blogging, believe me. xoxo Deb
DeleteOh Debra, thank you so much for this wonderful information. I have been going through alot of illnesses, but mine is old age, but I know where you are coming from. You have to be your own Dr, so to speak and keep going forward till you get the right answer.
ReplyDeleteI do hope the new medicine is helping you and you will feel great again. Prayers are being sent to you for a speedy recovery.
Mary
thanks so much Mary, I appreciate the prayers so much. take care and be well!
DeleteThank you for sharing your story. I am sorry you have to go thru all of this and I pray that one day you will feel good again. It is so hard to find doctors that will actually listen to you. Like you said, most of them want to pat you on the head and send you on the way. I will be praying for you!!!! (((HUGS)))
ReplyDelete~Des
thanks so much Des, I just keep talking, hoping at some point that they will listen! I so appreciate the prayers! xoxo, Deb
DeleteHi Debra. Very interesting. My hubby has Sjogren’s and is on Plaquenil. Did they tell you Plaquenil was used to treat malaria and they found it to be very helpful for people with Sjogren’s. My husband went through so much after being diagnosed with Sjogrens. He finally got to a very good Rheumatologist and now is feeling so great with the treatments.
ReplyDeleteHe had severe muscle pain and they could not figure out what the issue was. Finally he got tested for Sojourns and then once they figured that out and started him on Plaquenil he has his quality of life back. I have thyroid disease and that is very hard to regulate and have good quality of life. I have no metabolism and I have psoriasis along with chronic fatigue. I have been on therapy and replacement thyroid hormones that seem to be helping me. It is so frustrating when you have specific symptoms that mimic major issues and most doctors want to head in that direction. Glad you finally found a good Rheumatologist and they are treating you with up to date treatments that cover all the bases. I am sending you a big hug and lots of prayers to feel better. Life can really throw us some curves. As a nurse it always makes me sad to see how our health care providers do not look at the whole picture and quickly want to diagnosis. When they stop to really listen and put all the issues together to see a bigger picture that is a great health provider. Unfortunately you have to be your own advocate and keep pushing until you get someone to really listen and see the whole picture. I just feel for you that it took them so long to finally get you the help you need. Prayers and hugs.
xoxo
Kris
Wow,Kris. I'm so glad your hubby is doing so well. Only 1 in 10 men have Sjogrens. I hear you on the hard to regulate thyroid with low metabolism and chronic fatigue. I'm really anxious to hear about the treatments his Rheumatologist has him on. so far only Plaquenil has been mentioned. Thankyou so much for the prayers and always love a big hug. If you'd rather email me the info please do. I know he must be doing well since you all have tackled so many wonderful projects. xoxo D
DeleteDebra, thank you so much for opening up and sharing such a personal and profound life journey with us. I'm definitely bookmarking this for future reference or to share if needed. Like you, I have had health related issues of chronic illness -- in my case, it is a lung disease called bronchiectasis and a colonized superbug called pseudomonas which can flare up at times, often stress triggers it. It was why I retired early and ironically (or maybe not so ironically) since I retired, I haven't had any flares from it. Until we nailed all that conclusively, they told me I had some horrible things from false positives, including a tuberculosis "cousin" that would have been a devastating diagnosis. Fortunately, they retested and found they were off. But I was terrified. I will always have the bronchiectasis -- there is no cure, just management, but it seems to be under control. Still, it takes a toll on the immune system so I am interested in the topic and always keeping an eye on things. You did the smartest thing -- vigilance and not giving up till you found an answer. It is my hope your newest meds will show improvement and that you will continue to improve.
ReplyDeleteI am a strong advocate of bloggers who tell it like it is. Sometimes it's pretty decorating or craft ideas or a great trip or a wonderful recipe. And sometimes, it's the real life, nitty gritty of seeking answers and the fears and concerns and pain that can come with that. It's a wonderful community of caring people and I've never regretted "oversharing" when I've needed to, for the support has always been emotionally healing. I'm grateful you took that step, too.
Thankyou, Jeanie, I'm so very sorry to hear all that you've been through. It's really horrible to have a false diagnosis, especially when it's something so serious as what you were told. So glad that minimizing the stress has helped you get things under control. When I started blogging it was with the knowledge that I could only do it if I could be myself, and not only speak my mind, but be honest about my life. You're right, we should never regret oversharing because it always helps someone else.
DeleteDebra,
ReplyDeleteThanks you so much for sharing this information! I too suffer from AI disease. I was diagnosed with Hashimoto's Thyroiditis several years ago along with IBS which has worsened lately. My sister and niece have Discoid Lupus and my nephew has Psoriatic Arthritis along with my other nephew who has a rare Blood Dyscrasia which is also Auto Immune. I suffer from fatique , joint pain , heat and sun sensitivity. I will be sharing this post on my face book site if that is okay with you.....Tanks again!!
Hugs,
Deb
Thanks Debbie, I'm finding there are a lot of us out there with AI. I'm so glad everyone is sharing their experiences with it. I know there are so many of us, but often we just don't talk about what we're dealing with. Thanks for sharing on FB, I appreciate it!
DeleteThank you for sharing, Debra. I pray all goes well for you.
ReplyDeletethankyou, Sarah, I appreciate the prayers. take care!
DeleteDebra, I am sorry you have been suffering so. I wrote a post on hypothyroidism and my journey with it a good while back. MOST DOCTORS do not know much about Hashi's and treating hypo patients thoroughly. There are two really good sources for information, they are Stop The Thyroid Madness and Mary Shomon. There is a wealth of information on thyroid disease and other autoimmune diseases. Did you know you can develop heart problems because your thyroid is not being properly treated? You wrote the thyroid medication did little for you. Are you on a synthetic thyroid medication? Many patients require a thyroid medication that is called Natural Dessicated Thyroid medication. It gives you much more than the synthetic meds but the doctors won't tell you this. It's a long story with lots of information but it would do you good to read up on it. My Journey on my blog was written in 2015. I used to hurt all over my body and could barely climb the stairs. I did not know that low thyroid could cause such pain. Please come give it a read and message me if you have any questions. Here's the link: https://justjanblog.com/2016/01/05/my-journey/
ReplyDeleteHi Jan, this is such a great post, filled with so much great information. I came by and read it several days ago, but I was going to email you until I saw that you are a no-reply. Me too, and I cannot get it fixed. Anyway, yes, a little over a year ago, I talked my doctor into checking my T3 levels along with the rest of my Thyroid numbers. Mine was almost nonexistent. So she added in Cytomel to my Levothyroxine. After that things improved for me. The photos are just so telling. Doctors want to argue with you throughout the whole testing process. I don't know why they do not test for T3 routinely, because way too many people cannot convert T3 to T4 properly. thanks for sharing on my blog and for the link to this great post you've written. take care and stay well. I tried leaving a comment on your blog, but it wouldn't let me. sorry. Debra
DeleteSending healing prayers to you! My 38 year old daughter was diagnosed with Rheumatoid Arthritis last year, and my 40 year old daughter found out she has late onset Cystic Fibrosis when she was going through fertility treatments and had genetic testing. We always thought it was Asthma. It is amazing what can be done to help with these diseases in this modern age. Both of my daughter's are in remission due to miracle drugs. My eldest daughter was even able to have babies after years of having blocked tubes due to her disease. I hope that you can find the right medical care and drugs to help you in your difficult journey. x Karen
ReplyDeleteI hope you are finally getting the help and relief you have been searching for. You have been your own health advocate for sure. We have had to that for my husband too. Praying for you and for complete healing. Thanks for sharing your journey. I hope that those that need it, will find your blog.
ReplyDeleteThis blog is very helpful and informative for this particular topic. I appreciate your effort that has been taken to write this blog for us. Rheumatologist in hyderabad
ReplyDelete