neuro visit

[sharona]

Hi,
Well today was another neuro visit for Larry.Nothing new doc said he is humbled because he doesn't know what is wrong all he can say is MND,He said it could be parts of 4 different diseases,he has another patient very similar to Larry & she has been in contact with NIH so he is seeing she will talk to us about the process. they don't see patients they do research & then he would forward all his test results & his physical findings to them.I really don't know what to think anymore.Thank God his progression is slow what ever it is.He still can eat,talk & walk with the help of a cane & electric carts in stores.very tired though.still has pos babinski,& brisk reflexes, muscle weakness etc. GOD I WISH THEY WOULD FIND A CURE FOR THIS HORRIBLE DISEASE & ALL IT BRINGS TO FAMILIES .GOD BLESS
sharon

 

[Alyoop]

Sharon, just a nosey question. Does he have any upper motor neuron signs? I can't get a definite diagnosed after 3 years, hence the question. I live with a neurologist who is just as confused and frustrated.
Aly

 

[sharona]

Yes he does mostly have upper motor neuron signs.a few lower but mostly upper.very depressing. this has been going on for 4yrs.

 

[Alyoop]

Thanks Sharon. The computer put in the ALS before ALS diagnosis. So it should read just diagnosis. I am certainly not looking or wanting ALS.
I can understand your and his frustration. I have got to a place where I can just accept that the answer may not come for years. I think there are far more subtypes of mnd than are presently identified, and your husband falls into that group. I have umn signs and just s few lmn that are not progressing at the moment. It sucks
Aly

 

[rose]

Sharon,

I'm sorry you guys are still stuck spinning your wheels. Its amazingly frustrating. Did he ever have the single fiber emg done?

 

[sharona]

Hi Rose,
Yes Larry had the single fiber EMG done quite some time ago by an ALS/MG specialist she said not myasthenia of which she was almost positive that was what he had.Then she also said she didn't think ALS but that maybe we should go to Mayo in MN which is not an option for us at this time.No one seems to know what it is. We went to the university of il in chicago to see her naturally he saw the whole team of which they found he was seeing double & he didn't even know it but nobody said what that was or why.It is so frustrating he has so many things b12def,fascis,muscle weakness,slurred speech at times ,drooling ,crying,fatigue,depression, forgetfullness,pos babinski,brisk reflexes you name it .so sad he just wants to know what is happening to him,He wants a name.he gets b12 shots every 6wks & they don't help. Please keep Larry in your prayers.Thank you for asking & God Bless:sad:
Sharon

 

[hopingforcure]

Sure sounds like a UMN disease. Sure believe some variants of this stuff is just non named. MND variants... Hoping it is slow moving. Sure not easy.. Gosh we need more research..Sounds like the things you are doing will help with research.. Maybe towards more information.

 

[Miss]

Sharon, do you have private insurance? If so, maybe they could try IVIg treatments. They help a multitude of motor neuron diseases, just not ALS. If he responds, you would know at least that it isn't ALS but possibly CIPD or something in that family of diseases.

 

[Alyoop]

I have similar but less severe symptoms and had 6 months of IVig. 30 treatments in all. Did nothing but was certainly worth a try. Sounds a bit like PLS. Have they mentioned that?

 

[sharona]

No we don't have private ins.His doc wanted to try ivig but Larry said he will not try that or anything else like that until they put a name on it. No experimental drugs.The doc said it could be part PLS ALS etc.Just don't know. this is the second doc that said they are humbled his Gp & now the neuro.I guess we just wait & see.Thanks girls.God Bless
Sharon