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tony2006

Member
Joined
Feb 13, 2013
Messages
13
Reason
PALS
Diagnosis
02/2013
Country
US
State
tx
City
fort worth
Hello everyone,
2 years ago this month I was told by a group of trainees doc that I definitely have ALS at UT Southwestern in Dallas.Last month I was losing so much energy doctor at hospital get me a dose of IVIG for 3 days.I went home feeling so much better and start doing PT.Last week I lost all of those gain and feel weak again.My newest neuro is reffering seeking third opinion by doctor Stanley Appel in houston.I am so stressful and confusing do not know what to do.Muscle twitching,vibrating is getting worse.I need suggestions,advice or feedback please.
I have ALS and 1 more serious disease or what?I am so tired all of these years still in limbo.
 
I am glad you are finally going to a neuromuscular specialist. Dr Appel is among the best. Reading this and reading your previous thread really makes me wonder if you have been properly diagnosed as IVIG has helped you more than once. It would be perfectly reasonable if this were MMN for example that you are losing gains made since it has been a month from your last dose. IVIG is not supposed to help ALS at all. Ask your doctor is there is a suscipion of MMN. I think there must be? If so that should be conveyed to Dr Appel's group when the referral is requested. You should be seen sooner if that is on the table. And if you have MMN not ALS it is like hitting the lottery.
 
Thanks for your reply.That was the specialist I saw in May 2015 at Ut Southwestern.She told me to go home asking for more IVIG and also set me up for EMG test in June.That was when I was told that I have ALS after the needle was poke 2 places on my right arm.The specialist was not present in the room I took it as is and never ask for more treatment.Here I am still wonder after 2 years.Breathing,swallowing is still normal.Walking is at slower pace.A lot of muscle loss,both arms is useless need to be feed by someone.The problem is I have a dirty EMG and one brisk reflex on my right elbow(3 reading) that's why they think ALS
By the way my 8 years old type all of these.
 
I am sorry it was May 2013.Also my latest EMG was done couple month back.Neuro said no conduction block so nothing support MMN.My new neuro is wonderful enough to want me to see dr Appel asap.Do you think it would be a waste of time?I am so tired to go any places now.
 
After my first EMG, my neurologist told me that he suspected ALS or MMN. Also referred me to an ALS specialist for a second opinion. The second opinion took me three months to get. While waiting for the second opinion, my neurologist sent me for IVIG treatments in the hope that it would be MMN.
Well, after several IVIG treatments there was no improvement and the second opinion by the ALS specialist confirmed ALS.
The IVIG treatments are very expensive. Fortunately for me, my first neurologist had the charges reversed for the IVIG. (Great Dr and now friend). I hope your final diagnosis IS MMN!
Marty
 
Absolutely not waste of time. It really seems there is room for doubt here. Conduction block is not found 100 percent of time in MMN I think. I am confused. The IVIG was only once 2 years ago? Still I would want to get another opinion. As said before IVIG is not supposed to help ALS but does MMN and also CIDP. This is too important not to have certainty. If it is Not ALS you probably can get treatments to help
 
Yes,it was one time treatment include 3 months early 2013.So I went back to see my first neuro in April the following month and told him this stuff had really help me.He did check me and said I had no progresstions then referred me to UT Southwestern.Soon after I got the death sentence from the office of UT specialists (not the specialist herself). The neuro was so reluctant to ask for more treatment.
 
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