Hi, I have been sick for 2 1/2 years with a mystery illness and need help. I started feeling ill in the summer of 2010 when my choir traveled to Asia to do a series of concerts. The first symptom I noticed was feeling extremely dizzy when I was on stage and had to leave the concert half-way through. The rest of the trip was a nightmare and I couldn't go more than 30 minutes on stage without having a panic attack. This was especially disconcerting because I had been performing on stage for 15 years and never (even at my most nervous) felt anything like this. The attacks always start the same way. First, I get a feeling of weakness in my legs that makes me feel like I need to shift my weight constantly to maintain blood flow. Then the feeling moves to my arms and hands. Next, I start feeling light-headed and breathing becomes increasingly difficult. My eyes become irritated by the bright stage lights. Sometimes my mind wanders and I have hallucinatory thoughts. I can sometimes tough it out but most of the time it is too overwhelming and I have to leave the stage. I have tried bet-blockers, Xanax, and ssri anti-depressants to fix the problem. The only thing that worked was the ssri anti-depressant Celexa. I discontinued use after six months because it turned me into a zombie and caused me to do stupid things that resulted in several close relationships ending. I haven't found anything to replace Celexa but I refuse to use ssri medications ever again. I wish my illness was as simple as panic attacks but I strongly feel that they are a symptom of a more serious problem. Outside of the panic attacks on stage, I have suffered from muscle weakness, fatigue, jumping eyes (nystagmus), pitted nails that look like psoriasis nails, soft nails, dry-scaly nails, acid reflux, dizziness, and loss of balance. Over the past 2 1/2 years, I have had episodes where I feel better (but never 100%) and times where I can't get out of bed for days. I have been to several doctors and had several blood tests and nothing was conclusive. Since I have a family history of thyroid problems, I have had my thyroid checked by my family doctor and an endocrinologist at least five times since becoming ill and everything was within the normal range. I have had my parathyroid checked and analyzed by specialists in Tampa, had my adrenal glands checked, and had an MRI but nothing showed up. I have been taking a small daily dose of levothyroxine since 2010 for hypothyroid-like symptoms but I'm not sure if it has had any effect. I also take a mutli-vitamin (at a time that doesn't conflict with the levothyroxine), B-12, Vitamin D, and alfalfa pills but I still feel terrible. Exercise and diet don't seem to help either.In fact, they make me feel worse. Something of note is that I had a very bad case of mono when I was 5 that caused me to miss school for a month. The strain was so rare that the doctors spent several weeks trying to figure out what was wrong. Finally, they sent my blood to the CDC in Atlanta and discovered that I had a mutated strand of the virus that was only the second recorded case of it's kind in the U.S. It settled in my vital organs and I was told that I couldn't play rough for a year in order to protect my organs. I know there is a correlation between having mono as a child and developing MS in adulthood. My plan of action, once I save up enough money, is to see a neurologist. I feel like my symptoms are getting worse and I need to find out what is wrong before it's too late. My illness has already taken my music from me and I'm afraid that it could ultimately take my life if I don't find an answer. Please, if you have any idea what is wrong, drop me a line.
I forgot to mention, I also have weird sensations,almost like chills, that emanate from my spine between my neck and middle of the back that shoot down my spine and into my limbs. These sensations happen often and are not a result of any external stimulus like cold air or light brushing of the skin.
The words mystery diagnosis jumped out at me as I read your symptoms. There is actually a show called that. I talked to a woman whose son was featured on the show. After several years he was found to have CVID which is common-variable immune deficiency. She joined the immune deficiency community and has helped a lot of people.
To get more information from them for free, go to primaryimmune.org There is a lot of info on the web site and they are helpful on the phone too. They can recommend an immunologist in your area as well as diagnostic testing that can confirm or deny certain types of immune deficiency. I think they said that there are 150 different kinds of immune deficiency and usually people go through years of symptoms and misdiagnosis before finding answers.
I hope you get your answers sooner that that.
Hi! I also had a bad infection that precipated my symptoms of fatigue, anxiety, fluid retention and muscle aches. I had chicken pox when I was 39 years old. Not fun. When they were over I was.still swelled up and thought it was due to that virus. I did go to an internest and he ran blood tests which told me I have Hashimotos Thyroiditis and now full blown hypothyroidism. It is an autoimmune disease. There is antibody testing that can be done to diagnose this. A regular TSH/thyroid stimulating hormone will not always pick this up. I truely believe the chicken pox wrecked havoc on my immune system. I also now have inflammatory arthritis in my knees. Also an autoimmune disease. If you have one autoimmune disease you are predispositioned to get others. I hope maybe this helped you somewhat. Good luck and let us know what you find out!!
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