Newely diagnosed with MND

[Piccolo]

Hi,

I've was diagnosed with MND 4/2013. Prior to diagnosis I had 4 operations on my ams for nerve entraptment (Ulnar and median nerves). I started having problems holding my head up and walking. Before proceeding with 2 more operations for nerve entraptment, the surgeon sent me back to the neurologist. Had more MRIs, CAT scan, many blood tests and more electric needle tests (forgot what that procedure is called). I called the neurologist for results...over the phone I was told that I have MND, there is no cure or meds. I was given no other information! Waiting for primary doctor to call me to give me guidance. The disease seems to be progressing rather quickly. I would like info on how to proceed. Many thanks.

 

[vickim]

Hello and sorry to say welcome. I think you need to find another neuro. There are meds to help but not cure. There are many smart, caring and loving people here and will chime in. Is there an als clinic near you? They are a great help with info, loan closets for medical equipment and support groups.

 

[mich5]

Welcome! So sorry you found out in such an abrupt, non-caring way. I agree to find another neurologist to get info. My neurologist was able to recommend als clinics in my area where I received answers and support. Another good resource for answers and support is the ALS association in your area. They're at ALSA.org, choose In Your Community, and then choose your state.

 

[Piccolo]

Hi,
Thank you for responding. Having problems typing. I'm afraid to drive...so clinics, etc. are a problem...NJ transit is pathatic! The awesome primary doctor that I see will call me back and give me info and guidance. A care service I called...a nurse will be visiting to evaluate my needs next week. I'm taking over-the-counter med for leg cramps--not doing much for me... any suggestions?
Piccolo

 

[vickim]

I take pain med gabapentin for my neuropathy. I don't take any for the cramps. I am sure someone will chime in. I am glad you have some help coming in.

You may want to start a new thread on the PALS thread or the general discussions thread, more people will respond.

 

[pearshoot]

expect none of the entrapment operations accomplished anything. lucky for me the hand surgeon my gp sent me to did some tests and said there is something else going on here and sent me back to the neuro. a past member of our support group went the same thing to no avail

 

[mich5]

Try drinking tonic water for your cramps. Tonic water contains quinine - that's the ingredient that helps with the cramping.

 

[pearshoot]

dumb question does tonic water take place of regular water hard for me to drink what i need (forgetfull)

 

[mich5]

I just drink a glass (about 10-12ounces) before bed - I usually get cramps at night. I also drink my regular water throughout the day. If I go through a time period when my cramps seem to get worse (more frequent), I'll drink a glass and a half or 2 glasses in the evenings.

 

[Piccolo]

Hi All,

Tonic water: tastes awful; cannot drink it...yuck! I would put vodka in it but I'm on psych drugs (yeah...I'm bipolar!).

Nerve surgeries: didn't work; hands and forearms are just about useless.

New Neuro: he's getting copy of my file from 1st neuro. He said it sounds like I have MND, BUT also said there is something else wrong and needs more MRIs; possibility of MMN. I told the doctor that I pulled my sciatic nerve 7 weeks ago and he showed me what exercises to do. He must have said 5 times that I need to get support care/group(I'm working on it).

Saw the psych today; she doesn't understand why I'm not depressed...told her that FRUSTRATION has taken over depression! She increased the dosage of some of the meds!

Thank you for all the information and suggestions.

Piccolo