I was told i have als but i dont belive it can you help me?from a hospital in mass

[c_sonstrom]

hi my name is cheryl i was told that i have als at a hospitol in mass in the us when i was 22
but i dont belive it to be true from the reasuch i have done

see all my problems started when i was around 12 yrs old
mussle stiffness or weekness or in ablity to move that part of my body
but most of the time is stiffness and tenderness (neck)
around that time i was very health exept absess in 1 location on my body
that were recurent and still are to this day and ear infections were i had 13 sets of tubes but in my ears and low thorid

over many years i got used to these symtoms till i hit 15-17
when my lower back started having these symtoms along with my neck and again after a few years i got used to the pain assouated with my symtoms and moved on
still have the same stymtoms as above just use to the pain but no more tubes in ears

untill i hit 19-21 the pain got so bad i would be bed bound for a day or 2 and i started get sick alot with infections, abesses, cysts ,had orbital cellulitus and was hospitalized for 2 weeks cause of this this is when i started getting mussle twitch in my face and having allergic reactions almost every day needing to go to the hospitol for storids
i also started geting absess in another part of my body that are reacoring as well
and pain in different spots lasting up too 2 weeks then gone just as fast as it started
(shoulder,knee,wrist) this is when i started to fall alot for no reason at all as well

now a the age of 24 will be 25 in may with the same symtoms as note before are the same but now
the pain has got so bad siting in a chair on most days makes me want to cry
same goes for laying down
the twitching is not just in my face but in a small section in my calf,arm or hand not hands just my right side has the twitchs expect when my face is consured that is mostly my left now i am bed bond for up to a week unable to get up with out balling my eyes out just so i can go the restroom
my throid has been tested and i was taking of my meds cause my throid is now normal and i was told that that was inpossable but yet has happened but now i am diabetic
any body know of some thing that can cause this

i was tested for and had all these rulled out
heart problems
lyme
std
spinal injors
arthritus
not mental(been checked)
the tried fibrmyalga meds no luck so ruled that out

please help me i cant keep living like this my husband and me got to gether when i was 18 and though i know he loves me i know he is tired of taking care of me and wishs i was healther like when i was 18 when all im doing is get worse im in a power chair
for long trips when i say that i mean 1 block

 

[jb63]

Re: i was told i have als but i dont belive it can you help me?from a hosptiol in mas

I am very sorry to hear that you are in distress. What I do not understand is who gave you an als diagnosis. Pain is not a symptom, nor is infections. I am not a doctor but RSD can cause unrelenting pain. You have a very complex medical history that needs to be sorted out by doctors. Did you stop your thyroid meds on your own? If the twitiching is what they are saying is ALS, I am at a loss as it seems twitching is the least of your worries.

 

[ltbeauti]

Re: i was told i have als but i dont belive it can you help me?from a hosptiol in mas

I am no doctor, but to me your symptoms do not sound like ALS. Did you ever have an EMG? That is one of the tests that they give you. Although in early stages my EMG was clean.
Maybe it may be a form of MND or something. I am so sorry that you are dealing with this. Pain is not usually a symptom of ALS, but that said. Many experience pain with the disease. I know that my legs will be sore for days and it hurts to do anything.

A neurologist should be able to more definately give you diagnosed and help with the pain. However, having the ALS diagnosed may be helpful to you in getting benefits.

Wishing you well

 

[Al]

Re: i was told i have als but i dont belive it can you help me?from a hosptiol in mas

This doesn't sound like ALS to me at all. You need to start with a good GP and go from there. Somethings not right here.

AL.

 

[TedH5]

Re: i was told i have als but i dont belive it can you help me?from a hosptiol in mas

Maybe I missed it in your post, who diagnosed you with ALS? I would go to a Mayo Clinic or somewhere similar and start from scratch. Good luck to you.

 

[CoachMeg]

Time for a second opinion. What you have described does not sound like ALS at all. Even if it means starting from scratch with a new doctor, I believe you owe it to yourself.
Good luck and God Bless!

 

[ctk56]

Re: I was told i have als but i dont belive it can you help me?

As you are in Massachusetts, perhaps get in touch with an ALS clinic sponsored by the ALS Association or MDA. Here is the list:

MDA
MDA/ALS CENTER AT MASSACHUSETTS GENERAL HOSPITAL
617 724-1873
617 726-5346 FAX
Merit E. Cudkowicz, M.D., Director
CNY Building 149, 13th Street
Room 2274
Charlestown, MA 02129

MDA/ALS CENTER AT THE UNIVERSITY OF MASSACHUSETTS MEDICAL CENTER
508 856-3664
508 856-4485 FAX
Robert H. Brown, M.D., Director
University of Massachusetts Memorial Medical Center
55 Lake Avenue North
Worchester, MA 01655

ALSA

Beth Israel Deaconess Medical Center
330 Brookline Avenue
Boston, MA 02215
Medical Director: Elizabeth Raynor, MD
617-667-8130

Neurology Associates, ACC 835
MA General Hospital
15 Parkman Street
Boston, MA 02114
Medical Director: Merit Cudkowicz, MD
617-724-3914

University Campus of MA Memorial Health Care
55 Lake Avenue North
Worcester, MA 16550
Medical Director: David Chad, MD
508-856-4147

Hope this helps