Long Term Mystery Illnesses
Posted , 5 users are following.
I'd like to hear about other people's journeys with long term chronic illnesses that defy diagnosis. Let's compare notes, learn from each other, and give one another support. My mystery illness has been ongoing for nearly 30 years now. Only last year did they begin to diagnose some of it.. hashimotos hypothyroidism ,(no antibodies, dx by biopsy), anemia, oral allergy syndrome (can't eat most plant-based food), idiopathic angioedema, possible celiac, moderate esophageal dysmotility, allergy based problems, vocal cord dysfunction, fibromyalgia, idiopathic hypersomnia, mthfr double mutation, low igg, chronic Vit d deficiency and a partridge in a pear tree. still trying to figure out weaknes and pain in upper limbs and lower back, occasional collapsing on exercise, memory problems, brain fog, occasional word related issues, occasional crippling fatigue, tired all the time, falling, toe and rib dislocations, muscle spasms, chronic tendonitis. What is your story? How are you feeling about it all? How is life?
Jen
0 likes, 24 replies
sheila317 JenniePoobah
Posted
Hello,
Took nearly 20 years but I was eventually diagnosed with mixed connective tissue disease. I will try to list all my symptoms but it's lengthy like yours and I have brain fog. Headaches blurred vision confusion brain fog oral sores tongue swells difficulties swallowing general fatigue and pain (severe) muscles and joints hurt weakness in my legs. Tingling in my hands. Muscle spasms. Sensitive to cold fingers and toes sensitive to cold and painful. Difficult breathing heart palpitations back kidney pain. The overall worse part is the fatigue. Pain is no fun but the fatigue is just awful. Not having the strength to go to the bathroom is just embarrassing. Oh that reminds me constipation and diarrhea. I also was told drink coffee. Never been so disgusted in a physician before that. Pft!!! Drink coffee any doctor that says drink coffee as a remedy to chronic fatigue is a quack and get a new doctor. Oh and file a report. I was ignored for years until one day I could not open my eyes. I could hear my husband talking to me but I couldn't open my eyes. Vitamin D deficiency to the point of developing hypoparathyroidism along with just my normal hypothyroidism. I finally insisted on rheumatologist she was a quack I insisted on a second opinion and this rheumatologist (Harvard educated) finally diagnosed the mixed connective tissue disease. Oh and I have had 9 miscarriages in my life no live births. I now take Antimalaria medication helps a little I think. No pain meds trying to save my liver. But I understand your struggles and send you the best of wishes.
margaret22116 sheila317
Posted
Identify with you Sheila. I have been diagnosed with Behcet's and it's all so similar to your story. I am currently treated with mycophenolate and interferon and am symptom free. I hope you find some better treatment. I know it can be patchy. I see a specialist in vasculitis and that literally changed my life. So much better now with the treatment I get from him.
JenniePoobah sheila317
Posted
That sounds like a terrible struggle, Sheila. I'm glad you finally got some answers. You're right... The fatigue is the most disabling. I was also told to drink coffee. Lol. I switched doctors too. Are you taking anything for that? I was on provigil, which helped some. Are the oral sores like blisters? Or more like canker sores? How much has treatment helped? Did you ever get your vitamin d to the right range?
sheila317 JenniePoobah
Posted
The mouth sores are like cold sores. In the back and on sides. Tongue swells sometimes. The vitamin D is better. 10,000 ui twice a week and I try getting out in the sun. Still only in low normal range. I think diet helps. The vitamin D is what tipped me off. For some reason my body doesn't get the vitamins from my food........anemic too. Why? I don't know why. But I seem to have irritable bowel syndrome. The inflammation in my GI must have something to do with me not absorbing the vitamins sufficiently. Paleo works best for me. Although it is difficult. I try mostly no dairy and no sugar. That seems to be a good reasonable goal for me. I try no white bread. Oh I forgot to mention eye pain think I have terrible eye pain. Infuriating! It's just really not pleasant. On top of everything else it just seems to be that last drop in an already full glass of water that causes it to spill over for me.
JenniePoobah sheila317
Posted
I am on a meat/dairy heavy diet.. avoiding most plants. I developed really bad vomiting for 4 months last year... Then starting having allergic reactions to everything and gut disturbance, swallowing problems, huge abdominal swelling. Im currently avoiding allergy foods. Fodmaps also and gluten free. Still having symptoms, but a little less intense. I was reading about gut disturbances and their relationship to collagen disorders. Oral ulcers too. I get ulcers and clear and bloody blisters inside my mouth. I am thinking I might have ehler danlos hypermobility type. Seeing rheumatologist at the end of the month. Its fascinating to me how similar the stories are. I am also struggling to get my Vit d in range. My body no longer likes the oral forms of Vit d so I'm looking for an injection. It's quite a challenge to around all of the obstacles.
margaret22116 sheila317
Posted
Sheila reading your post again. The ukcers sound very like Behcet's ulceratiin to me. Do you get ilceration elsrwhere?
margaret22116 JenniePoobah
Posted
This lack of vitamin d is also symptomatic of auto immune dosorders everyone I know with Behcet's has problems with vit d. X
sheila317 margaret22116
Posted
Sometimes labia sores I seen Doctor of course suspected my spouse-lol. Had all the tests. Everything negative. So they just shrugged their shoulders and brushed me off. Blamed my underwear?????? I swear sometimes!!!!! But mostly just mouth sores. I read up on bechets I think your right. But who knows what doctor thinks. I think it's hard for them if you look fine on the outside. Relatively young and attractive intelligent they think I must be running a game/scam on them. Or maybe hypochondriac. They sent me to psychiatrist who said I didn't need any treatment with them. Oh I kept that report. Show it to my husband sometimes when we argue. Lol.
margaret22116 sheila317
Posted
Ok...yes that is Behcet's Sheila. Don't think anything else causes those sores you describe. Shame on your doctor for not knowing that. I have that type of ulcer only once in a blue moon but they are very significant for diagnosis.
I think you are in the States from what I can gather. There is a very famous doctor in New York called Yusuf Yazici who is a leading world authority on Behcet's. You may be nowhere near NYC of course. In which case there are other docs who would recognise your symptoms and make a proper diagnosis. The American Vasculitis association would be a very good point of contact for you. Very supportive and informative. Great help group also on facebook full of amazing people from US UK and Australia....all over really. We even have one girl from Sweden bless her. Think she is very much on her own. Disease is virtually unheard of there X