Hi, possible diagnosis given

[connieS]

A great hello to all of you in this forum. Havve been searching around for information since I was given the possible diagnosis two weeks ago. Am now waiting for my 6mths "observation" period to be over, hope to get cleared of this diagnosis! Wasn't really keen on finding out more, but thought since I have to wait, might as well look for ways to clear myself.

The symptoms I have are upper and lower limbs affected, started on the left, now also on the right. I thought I was only getting thinner but neuro said there was muscle atrophy on all limbs. I am not sure how they got to that. They're now stuffing me with lots of vitamins, hoping that it'll get my strength back, as I just keep losing weight. Apparently they felt I was malnourished. Am now trying my best to eat and eat, and also exercise and practice my walking, hope to be able to walk further each day.. Look forward to learning from all of you! :mrgreen:

 

[crystalkk]

Hi Connie,

I am sorry for what you are going through. Welcome to the forum...
What tests did you all ready have and how long has this been going on?
Don't overdo it with exercise when you are tired stop and get some rest.

 

[Zaphoon]

Connie,

At this point, it is only a "Possible" diagnosis of ALS. There are still things it may be and perhaps it will be discovered that you have something else.

An ALS diagnosis is concluded only after all else has been ruled out. That process takes a while. Please be patient and let's hope for the best!

Zaphoon

 

[connieS]

Hi crysstalk and Zaphoon, thanks for your replies! Yup, I've been through the process, and the neuros were very helpful in only telling me about ALS after all else has been excluded. I'm an extremely optimistic person, so I too at this moment, feel that it may not be ALS. =) I've already waited for close to a year for a diagnosis, just found a very nice neuro in May 09, so am quite confident that I'll be able to get it sorted out. The only thing is that my neuro's overseas and the only way of contact is via email.

I have had MRIs, brain and spine, the latter done with contrast. I've also had tonnes of bloodtests done, and one lumbar puncture. All turned out fine. The only thing was my EMGs, I have had 5 EMGs, 2 showed damage, 1 wasnt very optimistic, as my neuro put it. The ones with problems were done in May (1 EMG) and June (2EMGs), while the first two done Dec 08 and early Feb 09 were all clear.

I'm hoping for the best, just can't wait to run and swim again! Or perhaps can I add, walk like I used to. I usually walk till my limbs are stiff then I stop and rest. Then continue the next day. My symptoms first started last August (left side), got worse in March (right side), and bad in May. I said bad as I was on trial for Myasthenia Gravis and the medicine just made me so much worse. Now I'm back to my condition in March, though my strength's somewhat weaker than in March.