Hello all!
Please forgive me, because I'll try to condense everything that has been happening. I'm just very tired from trying to explain how I feel, so it seems to me that it would be too long and stressful for me to write a loooong topic, so I'll try to keep it short.
I'm from a small country in Europe. My problems started a long time ago, while I was still in high school (I've finished faculty last year). Back then I was training martial arts, and started noticing that I'm short of breath for quite often. I decided to ignore it, but getting up from the floor during the fights was more and more hard. OK, I know that I have anemia problems for years so I thought that that's the reason, and was on treatment with iron supplement for many times, but things didn't get better, although my iron and hemoglobin were balanced. After for few times I didn't manage to get up and was gasping for air while my heart was racing I've decided to quit. I guessed that I was overdoing it. Still I was left with gym class in school. I wasn't able to get rid of that exhaustion problems and was barely lifting my feet. Anemia, I thought. My brain started refusing cooperation for many times. Anemia, I thought again.
After I've finished high school and get rid of that gym, things were a bit better, but I still had anemia problems. One summer I was on a outside and after standing for half an hour started feeling very dizzy, tingling up my neck, head and lips, and starting to feel numb, like that my legs will not hold me any longer. I've got huge nausea, started breathing more and more shallow and was feeling very slow as I will just shutdown. My vision started to go dark and I've barely managed to drag myself to the shades. I couldn't react on outside stimulans in any way but I still could hear. There was a doctor near by and he measured my BP - it was 90/60. I needed about 15 mins to start seeing again but I was feeling beaten for the rest of the day. My GP said that it's just anemia and that I didn't hydrate properly. Same thing happened few years later, but in worse shape. This time I was in same paralyzed condition for more than half an hour, and my entire body was in pain for the rest of the day and I was entirely exhausted. I was thinking that it's anemia again. Since then I avoid sun and heat in any way I can, because things are now even more worse - if I stand even for few mins in the sun, I get that tingles again and start to feel nauseous and that I'll faint. Two years after that almost-fainting things started I've went to faculty. I had huge troubles with exhaustion (no matter how much I would try not to, I would literally fell asleep on classes, even once on and exam!). On my second year I started having low grade fever and pain on the right side of chest. GP ordered X-ray and basic blood work, but everything was fine (my lymphocytes were just a bit elevated). After few months fever went away but kept coming back, same as the pain. I've decided to ignore it - it's probably just the stress. On my third year I had my appendix removed because chronic inflammation. After that I had an outburst of problems - often headaches that would last for days, again chest pain (always on the same spot!), enlarged lymph nodes and neck (I'm feeling like that it's under constant pressure), tachycardia on just a bit bigger physical strain (I would even start to choke), constant fatigue and huge degradation of mental abilities. My GP would just shrug and say that it's just stress. Then 1.5 years ago my iron jumped over the top value (ref. val. is 8-30, mine was 31.5) and he only commented that it's better to have more than less. All of that was making me sad, but I didn't have any choice but to accept the stress reason. Then, because I had often headaches, my ophthalmologist sent me to neurologist. I've told her about my almost-fainting episodes and everything else so she ordered a standard batch of test. All came back fine (blood work, EEG, thyroid) so she said that I'm "just like that, a bit more sensitive". I wasn't happy with that answer so I asked what else we could do. She then ordered testing of autonomic nervous system. Then they said that I need to do holter EKG and heart ultrasound first. Cardiologist checked my results and said that I have mitral valve prolapse and overreacting sympathetic system. No therapy needed. Lab didn't do the ANS testing because the heart issues. Neuro was a bit reluctant but decided to start me on minimal dose of Seroxat to try to bounce the system back in balance. My GP was sick then and the replacement GP didn't want to give me the med and sent me to psychiatrist. I've refused to go. Just before my doc went to leave, he did refer me to dermatologist because of itching. Dermo made a scratch test on my hand and said that I have urticaria factitia, and foliculitis on my back. I've got Letizen (Zyrtec in US) 10 mg/day dose and some lotion for my back. 3 months later I've returned for a follow-up and she said that my dermographism is gone now (it was +++ before) and that I should get off the med soon. I'm kinda not happy with that. The med did help me with headaches and itching and I don't turn so red now (although I still do after taking a shower or being on sun). Still I do get more itching in the evening hours. My neck is still swollen and I still have that fever swings. Plus there's a new symptom - burning pain in my muscles and knee, that would last for weeks.. Dermo ordered also ANA test and antithyroid antibodies, so I'm waiting for that testing too.
I've asked for second neuro opinion and the new neuro ordered brain MRI. The results returned practically perfect. She started me on 25 mg of Zoloft last week. The first day I had a feeling like that I'm going to start choking - my neck felt really tight from the inside, and huge from the outside and started to go numb. I didn't want to go to ER, because, well, I wasn't choking! And I was afraid that they'll laugh at me and just sent me home. I've tried to take one more Letizen but it didn't help. Things were getting gradually better during next few days, and from other side effects I had a bit of nausea. I've asked my neuro could this be mastocytosis. She didn't know, but ordered serum tryptase and histamin in serum and 24h urine test. You know what's the worst part? No hospital here (and I mean not a single one) or private clinics do the histamine in serum and urine test! I've found only one hospital that does tryptase test so I'll go for it next week.
All of this is killing me! Doctors are ignoring me and sending me off with "that is normal", "oh it's just stress", "that is a psychical problem" or imply that it's depression related, and people around me tell me or that I look fine or that I'm lazy, spoiled and looking for attention. They don't understand how everything is stressful for me and how sick and tired I feel. I'm 28 and I feel sooo awful!
Sorry, in the end it wasn't so short, but it could be longer, right? I'm sorry.. I'm just scared and fed up with everything.. I'm loosing hope that I'll found up what's wrong. In your opinion, could this be some sort of mast cell disorder? I was thinking about writing an email to dr. Akin or dr. Castells and ask for opinion, but I'm afraid that I would sound like a nut right now..
EDIT:
I've forgotten to say this before: when it itches, it sometimes look like something similar to a mosquito byte, but it isn't quite. Or it's similar to a pimple.
If I try to get rid of the pimples on my face, that little wounds won't heal or I get scars. That started cca 3 years ago.
Also, my iron level is dropping again. It's 10 now and hemoglobin is under level again.
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