neuro

[Cjo33]

HI. Im a previously very very healthy 34 year old.I used to be a runner. about a year ago I started having digestive problems. like my digestion just stopped.a ct said I had an ilius, i was diagnosed with viral gastroenteritis. about 3 months later I got a horrible URI. it took forever to get over it I had to take prednisone and I dont know how many different antibiotics. then I had a complete rectal and pelvic prolapse. about that time I started having perirobital edema and helitrope around both eyes and fasciculations around my right eye (which persists but the fasciculations are all over my body now) a couple months later right arm weakness. and now trouble breathing. I have had 2 emgs one of which showed decrement with repetive nerve stimulation right trapezius. Mysthenia and Anti Musk? were normal. ESR, ANA, CK,TSH CBC everything has been normal. Brain and spine (cervical thoracic and lumbar) all normal.believe me Ive had a very thorough workup. recently Ive noted trouble swallowing and although my neuro didnt notice I have a deviated uvula. I had a PFT with showed possible mild restrictive and obstructive traits. MIP was normal MEP was low. plesthy-whatever (sorry I dont know exactly what its called) that was was restrictive. possible upper thoracic obstruction. VQ scan normal waiting on echo. I was a serious runner. I have never had problems breathing. I even went to a rheumatologist due to possibility of connective tissue disease (the prolapse out of nowhere? I have 1 five year old child). but tottally dismissed. I have looked and researched my self and I want to know if amyopathic dermamysotis could be a possiblilty. or vagus nerve lesion I dont know. Ive been told noway ALS. but of course concerned with that as well. Do you have any ideas as to where I should turn.any tests you recommend I pursue?

[Cjo33]

So. On Friday I was diagnosed with heriditary angioedema. confirmed by a complement blood test. Do you think this could have anything at all to do with fasciculations though? I cannt see how they connect.

[Cjo33]

I will try. Ive been to 11 General physicians who have absolutely no idea whatsoever whats going on. 2 neurologists, a naturopath, and 1 very "good"rheumatologist(it was like pulling teeth to get the consult. who completely dismissed me. I also need to add. my b12 is through the roof, and my heart rate and blood pressure are extrememly low. Noone believes the prolapse issue if related to anything else (extrememly unusual for me) or the restrictive breathing (agan, I was a distance runner) or the swollen twitching eyes, fasciculations. Is there anyone in Southern California you would recommend?any tests you could recommend that I ask for?

[Abhijeet Ghosh]

Dear Friend,
I agree with the EMG change, but you need to visit a good Rheumatologist or am expert general physician as the root cause is related to auto-immmune disease.

Regards..

[Cjo33]

thankyou for your time. I did go to rheumatology and was tottally dismissed and told it was a neuro issue due to the positive emg.normal lab work, no joint pain. I dont know what to do.

[Abhijeet Ghosh]

Dear Friend,
many thanks for the post.
I am really sorry to hear about all the misery you have gone through.
Actually there is a sort of auto-immune disease going on inside tour body.
I will not think it as ALS or MS as they affect nervous system predominantly.
This is a separate entitity, which is causing full body effect.... like the prolapse issue.

I will not be able to give you a proper guidance, in this issue.
Best is to consult Rheumatologist or a good specialist, who is treating auto-immune disease.
You have said that you are undergoing pelvic reconstruction. But we really need to know the root cause of the same, else we will have the issue resolved, but it may reoccur again.
Regard..

Please discuss, if you have any query.

[Cjo33]

I also want to add normal HIV,Hep B, C, I even had them test for trichinillis due to the periorbital edema. Albumin everything. theres not an abnormal test except slightly elevated eisoniphils,(no its not allergies) and I believe RBCs were just slightly off but not even enough for them to recommend a multivitamin. also normal pelvic/abdominal CT, and pelvic ultrasound. any other tests or recommendations would be appreciated! were playing the wait and see how much worse it gets game at neuro and I am really suffering here. especially with the difficulty breathing. Also Im getting ready to undergo pelvic reconsrtuctive surg as soon as Im cleared by the pulmonologist. So Im pretty concerned with that as well.