New diagnosis

[david108tx]

I noticed a weak left hand in fall 2013. I saw a neurologist at UT Medicine San Antonio in November and was diagnosed with multifocal motor neuropathy. I started iv immunoglobulin in February. I continued with ivig until June. It was not working. My neurologist said she was leaning toward a diagnosis of ALS and wanted me to see another neurologist in the same practice to make a diagnosis.

At this point, my left hand and wrist are paralyzed and floppy. Both elbows, both shoulders, and my right hand are very weak. I went in for an appointment with the new doc last week. She diagnosed me with brachial amyotrophic diplegia, which she described as type of motor neuron disease affecting lower motor neurons only and which limits itself to upper extremity symptoms for a long time.

I'm 64 years old, married, with two daughters and six grandchildren. I'm an English professor and still hope to work one more academic year before retiring.

I'd like to learn more about BAD. If anyone knows of good sources of info please let me know.

David

 

[MaxEidswick]

David, try to take the time to come to Appel's diagnosis session at Houston Methodist -- your neuro should be able to get you a referral ... San Antonio is a beautiful place ...

.

 

[lgelb]

Hi, David, and welcome to our diverse club.

BAD is also called "flail arm syndrome" or the "flail arm" variant of ALS. Median survival is described as ~5y but based on pretty old/geographically clustered data. You may or may not get that academic year, depending on how much you have to do physically. If you mostly lecture/critique and can find a way to grade papers (or have a TA?), you should be OK. It might be a good time to buy voice recognition software (Dragon) if you don't have it. Sign up now for a "disabled person" parking sticker and the like.

Google PubMed flail arm ALS and other combinations (in or out of Medline) to see relevant abstracts. There are also quite a few conference abstracts on line apart from Medline, and posters, too. I'll post some other links later when I have more time.

 

[MaxEidswick]

David, if you are a vet, contact the PVA ASAP ...

 

[david108tx]

Thanks for your replies.

Max, thanks for the suggestion. Appel's diagnostic session sounds intriguing. And, no, I'm not a veteran.

Igelb, thanks for the search term ideas. I only take student papers electronically, so that should help. I know I'll need a student worker to help me in class. I have disabled parking sticker my wife uses when she drops me off and pucks me up. I stopped driving a few weeks ago. I've purchased Dragon for MAC to use at home and the department has bought me the Windows version to use at work.

Thanks!

David

 

[david108tx]

I guess I can't edit. Excuse the typos.
David

 

[BlueEyesOhio7]

David,

Welcome! This is a good place to be to ask questions and get support.

Lynne

 

[MaxEidswick]

>I guess I can't edit. Excuse the typos.

David there is an edit button just after you post. It stays there for a short time, but if you click it just after you post it will wait patiently for you to do what ever editing you want.

 

[david108tx]

Thanks, Max.

 

[SMP51]

David, work as long as you can, but not to the extent that all your energy goes into work, save some for family and things you want to do with them. ALS saps your energy so use it wisely. each day you have X amount of energy and when it is gone for the day your done... don't over extent yourself!

 

[david108tx]

David, work as long as you can, but not to the extent that all your energy goes into work, save some for family and things you want to do with them. ALS saps your energy so use it wisely. each day you have X amount of energy and when it is gone for the day your done... don't over extent yourself!

That's good advice, smp51. Thanks,
David