Any MS patients on here?

[MikeJ]

Hi,

Any MS patients on here with neuromuscular disorders? I have MS and my neurologist wants me to see a neurologist who specializes in Neuromuscular disorders. He stated on the order fasciculations and nerve root entrapment. Going to have a EMG and NCV done in about a week. MRI on head/cervical area was ok. My MS has been pretty benign for some time now. I did quit working for cognitive and fatigue reasons. My legs are getting weaker and so is my right hand now. Its hard to step over things with catching my foot and falling. I loose my balance if I hit my foot on anything anymore. I fell pretty hard a couple of times last year, ended up with a subdural hematoma in the head. I had cramps in my foot and legs for years. My right thumb started cramping last fall when using tools. It then spread to rest of the fingers on the same hand. It stopped for a while during the winter when I quit using hand tools. I like to work on Bonsai trees and use small hand tools. The cramps came back in the same hand after the first of the year and I was not using any tools. My left neck and top of shoulder are also cramping up on a regular basis. Mentioned all this to my PD and blood tests came back fine. I was at my yearly check up for the head injury and my neurologist pointed out atrophy in my right hand. Its a lot harder to open jars now. Fasciculations have been going on now for 23 years, I don't pay much attention to them anymore. They started after a MS attack and have never stopped. The differ in size between tiny ones, somewhat larger ones and big ones you cannot miss or feel. My left hand started cramping just about a year after the right hand started. My thighs have spasticity in them if I sit to long. This has nothing to do with MS. My MS attacks included spasticity in my legs, but it took a week before it went away and my calves were always involved. These new ones stop hurting after a couple of hours of moving around, sometimes it takes longer.

So I was just wondering how many people are affected by both by MS and MND?

It would make me very happy to blame all of this stuff on MS, but it sure does not act like MS. I have 30 years of experience with MS and this seems to be much different. I hope I am wrong.

How long do EMG and NCV tests take these days. I had this done in the late 80's and there were ok except 1 spot. Surely they have come up with something newer?

Thanks for your time,

Mike

 

[R9L13026]

No nothing newer. EMG/NCV tests seem pretty archaic.

 

[Robinetta]

Possible, Mike.

Looks to be about the same boat you're in atm. It could be both, just as possibly either. Or maybe it's neither and I'm off the rails on a crazy train. Hop on in!

My neuro involvement-balance, speech, vision, memory, sensation, etc.-resolves when inflammation recedes. My lesions are C-spine; Optical-Spinal manifestation minus the Optica. There is no differential Dx or other cause. I lack even normal, age-appropriate cord/vert./disk degeneration somehow.

That isn't progressing now, seemingly. It onset in 2010. Following: Big, Big Fibro circa 2008. Savella on board from the time it was approved. Helped tons. Vitamin D-less-a big component for me, compounds things in a major way. replacement supplements @5000 iu a day.

What I've got going now is a whole different kettle of fish. A combination of hallmark symptoms (key aspects of a specific pathology), unrelated to MS or Fibro, are progressing in objective and a subjective manner-fast.

ie., The only thing that goes down the wrong pipe is plain water (?). Lifting my arms...good gravy I have to lie down and to use a touch screen-a tablet I mean-and, even so, rest them every few minutes in between. When carrying the weight of a Pomeranian or brushing your hair drops you, there's an issue. The stairs? Let me work up to it and then step aside. I will have to sit smack down in the floor if I encounter an obstacle on my way to furniture.

 

[Bad Balance]

Hmmm...do these belong in "Do I Have Als?"

 

[MikeJ]

Hmmm...do these belong in "Do I Have Als?"

Maybe, I was looking for someone with motor neuron and MS diagnosis to see if was possible to have both?

My MS neurologist is one of the top MS doctors and researchers in the MS world. He just told me that they are starting clinical trials on patients now for a new drug that reverses MS type lesions in mice immediately and restores them to full function. He also said there was another competing drug that is doing something similar. It would be nice to see something for ALS/neuromuscular patients to. I never thought they would find anything for MS, but it is looking very good so far. He fist told me about this 2 years ago and now there starting phase II of the study. I have been going to my MS Dr. for 23 years now and he never talked about a cure until 2 years ago and urged me to not give up hope.

I hope the PALS on this forum never give up on hope, someday they will find a cure for this.


My trip to the neuromuscular doctor was rather confusing. She was suppose to evaluate me for neuromuscular disorders, she asked some questions and did both tests. She first said maybe early carpel tunnel syndrome, then diabetic neuropathy and finally ulnar never damage in my elbow, if I remember correctly, based on the ncv test. The emg was fine except the hand atrophy where she saw fasciculations and some other type of problem. I only remember her saying something about fibrillations. I am going to have to get a copy of the report. I am not really sure she did what my Dr. wanted done. She only looked at my right arm/hand and right leg even though the other side is having issues to. So I will have to call him and find out what the bottom line is on all of this.

Robin,

Sorry to hear about your trouble, it must be hard to be going through all this uncertainty in your life. I wish I could offer you some suggestions, but I am pretty clueless when it comes to this type of stuff. I like my Dr.'s there pretty smart and caring. My MS Dr. immediately referred me to the neuromuscular Dr. when he saw my hand. Time will tell the truth in my case sooner or latter. I will just keep plugging along the best I can.

I wish you well.

Mike

 

[Robinetta]

A Comoros possibility being that of ALS, and that being the main concern, would indicate that this is an appropriate place for the topic.

 

[Robinetta]

*co morbid I meant. Apologies. I'm not having the best time typing or spelling.

 

[MikeJ]

I posted a reply earlier and it went to the moderator for some reason. How long does it take to be reviewed and approved?

Mike