als clinics

[dmwa]

I was diagnosed 3 weeks ago with als but neurologist is unsure of type. I have aiready lost use of my left hand and have weakness in right. I have an appt at MUSC in Charleston SC in Nov and wondering if anyone has had any experience at that facility. I am a veteran and could probably go to the va clinic in Charleston but unsure which would be best. Thanks for any feedback.

 

[Nikki J]

Hi sorry to hear this but welcome. Whether you decide to get your main care at MUSC or not you should be pursuing VA benefits. If you have not yet done so call the paralyzed veterans of America for help getting started as this is considered 100% service connected. Please read the military subforum sticky as well
https://www.alsforums.com/forum/military-veterans-va/26955-guide-veterans-benefits.html

 

[dmwa]

Thanks NikkiJ, Guess I'm still in shock and just trying to decide what's best. I am applying for va benefits but just don't know which clinic is best for me.

 

[lgelb]

You can do some of each. Figure out what the strengths are, who can get what done, and work out a plan that is best for you. Many find that the VA is richer in terms of big-ticket items, e.g. equipment and of course home renovations.

Sorry to hear about your diagnosis. Feel free to post more of an intro to yourself and we will support you however we can.

Best,
Laurie

 

[dmwa]

Thanks for your advice Laurie, I seem to have developed another problem that I hope someone can help with. It seems I have gotten super sensitive to sudden sounds, telephone ringing beside me or any sharp sound that I'm not expecting causes me to jump out of my skin. My Neurologist says she has never heard of this in an ALS patient. Going for a second opinion in Nov but just wondered if anyone on this forum has any info on this. Thanks Doug

 

[gooseberry]

Hey Doug�� VA doesnt work the same everywhere. Some have clinics, some just schedule you with providers you need. VA diagnosis needs to happen or proof from a neuro they will accept. This is your ticket to many things for you now, family down the road, and remodel of your dwelling.

Each facility has a different personality. VA care will be free. You may pay for clinic. You have to see what works for you. My husband went to clinic thru private insurance and saw docs at the VA so he could get the van, pwc, remodel, etc.

 

[lgelb]

I don't see any papers suggesting hyperacusis (heightened sensitivity to sounds) + ALS has been reported to date. Doesn't mean some people might not have both, or it could be related to things like fatigue, anxiety and dehydration, to the extent that you are experiencing these in the post-diagnosis period. You might also want to have your ears checked by an ENT.

 

[ShiftKicker]

Just a note about that- it's been discussed a couple of times on this forum. Some folks with UMN issues seem to have an overwhelming startle reflex or increased spasticity with sounds and smells.

Fiona

 

[azwxman]

i don't know if its overwhelming but i have gotten very easy to startle, much to the de light of my 24 year old daughter. she makes me jump and just laughs and laughs. she is getting even with me, i guess.

 

[affected]

While it may not be documented, that startle reflex is very real with ALS.

It is often triggered by sounds or by touch. If Chris was suddenly touched it could evoke that startle reflex as well as a sudden sound.

 

[mpnatx]

I startle very easily. Never used to. If someone puts there coffee cup on the table, I jump. Any unexpected sound loud or not. Doorbell, phone, etc. I also can't watch certain types of movies now. Scary ones are bad. Like I said, I never felt this way before ALS.
Marty

 

[Blsenn]

I have experienced a heightened sense of hearing, smell and touch. I can't stand anything but the softest t-shirt cotton on my body. No sheet on my feet. Hearing and smell have been affected also. But my eyesight has not been affected, darn it!!

 

[KimT]

I experience hyperacusis but thought it was due to my vestibular issues (which I've had since 2002.) I'm also chemically sensitive so strong smells get to me. I often wonder if ALS is connected with vestibular problems and chemical sensitivity. I experienced symptoms that reminded my cousin who was a Lt.Col. in the Army of Gulf War syndrome back in 1998. She seems to think there might be some connection. She is a director of an ED and has a strong medical background as an RN.

I threw away my blanket on the bed and bought a very light weight cotton bedspread because the blanket was too heavy. I am very sensitive to touch now, along with all the rest.

 

[ShiftKicker]

Kim, if look up Central Sensitization Disorder you might be able to see some parallels with things. I usually go to mod if I post links, but there are a few papers published about links between this and Central Nervous System issues from the NCBI.

I just saw a different specialist (internist) yesterday who has provided me some really interesting food for thought, and your above post reminded me of some information he passed on to me.

Fiona

 

[chally]

Welcome Doug and sorry your here,
Get a PVA rep right away, they will help you like nobodies business and yes all va seem to function differently.
There is a lot of help through va for ALS vets so don't wait act now on it cause everything is slow and time is something we don't have. Good luck friend,keep posting. I was USMC 68-69
Vietnam ,grunt combat wounded. How about you? Chally