Progressive neuro illness---possible MND?

[RedFlame]

Hello, I have been ‘lurking’ this site for a couple of weeks now, wondering if the progressive disease I have could be a MND. I have a deep respect for all of you that are fighting this horrible disease. I hate to ask but . am worried Here is my story in short form. If you can please read and tell my what you rhing.


This whole thing started with my left hand, pain and inability to do fine motor skills. Now, both hands are involved. I can’t open a bubble pack, open a jar, or open a cheese package. I have difficulty using a key in the door of my house. Then extreme fatigue, taste issues, electric shock like feelings and an occasional flue like feeling.


I noticed a change in swallowing but nothing dramatic. The thing I noticed was that I had to think about what I was doing, the other thing was that my swallowing seemed louder. I also had a reduction of sensation in my mouth.
I continued with pain in both hands, growing weakness to the point of muscle loss.

I began having spasms or involuntary movements (twitches) and some splasticity.
The spasms were painful at times and I had/have severe pain in my back.
My weakness began in my thighs, then my arms. Recently my calves are beginning to feel weak. It’s a feeling of these limbs becoming very heavy. Like it takes strength to lift them. My whole body just feels so heavy.

It has been a fairly steady downhill ride. I use a rollater outside if I can make it to a small store. I haven’t been to a grocery store in 5 months now. I have stubbed my toes and have fallen a number of times. I do have days here and there where it feels like the progression is on a plateau. My twitches have become more. Powerful.

We have ruled out tons of diseases, RA, PA, Lyme, MS, radiculopathy, orthopedics, etc.
My neuro exam is positive for Romberg, Hoffman’s, babysinki, hyper-reflexia on left leg, hyporeflexia on right, can’t walk straight, ataxia etc.

MRI has only a few scattered areas of hyperintensities.
At this point I have been referred back to my GP Neurologist from the MS Specialist.
It’s been about a year now with no diagnosis.

Could this be a motor neuron disease? I can’t think of anything that profound and terrifying.
What do you think? Should I ask my neuro for a work-up for MND

Thanks so much!

Red

 

[joelc]

I would encourage you to get to a MND neurologist. It could be be but you need to see this neuro first. I certainly hope it is not!

 

[Moonmark]

Hello, Red- so sorry to hear about your worsening problems. It seems to me that it is time to go beyond your general neurologist and head to an ALSA-certified ALS clinic to see a neurologist specializing in neuromuscular disease.

I did not see any mention of an EMG during this prolonged illness- was one conducted and what did it show. I think you should have one at this point.

there is a certified ALS center right there in Ann Arbor:

University of Michigan Health System
1914/0316 Taubman Center
1500 East Medical Center Drive
Ann Arbor, MI 48109
Kirsten Gruis, MD, Medical Director
734-936-9020

Hoping you get some answers soon that point away from ALS and to something treatable.

Best-

Sandra

 

[RedFlame]

Hi Sandra and Joelc,

Thank you so much for responding to my post. I did have a lower SSEP that was significant. They were basically unable to ellicit a response in my right leg. Only using the highest electric pulse possible, then only obtaining a slight flicker in the sole area of foot.

MS is ruled out at this point.

I see my GP neuro tomorrow for follow-up. I am going to give her an update and request a referral. The diagnosis period has taken more time becuase I didn't tell anyone what was happening.

I haven't had an EMG or any of the tests that people with possible ALS have. I think that is the next step. I'm glad to see that Uof M has a clinic as I live in Ann Arbor.

Hopefully this will show that I don't have ALS. I have the utmost respect for all of you here and quite frankly, can't think of anything more terrifying.

Thank you again.

Red

 

[Lavender Lady]

Red, I am glad you are going to follow up with a ALS neuro. then you will know one way or another. I will pray for a good report.

 

[RedFlame]

Just wanted to let you know that my neurologist ordered an EMG to be done in October. If it shows anything she will refer to U of M ALS clinic.

She thinks ALS is only remotely possible so I won't worry about it until the results are in. Hopefully she is right! If not I will deal with it then.

I will let you guys know either way. Thank you for your support and info.

Red

 

[Moonmark]

Red- I just wanted to say that is seems the abnormal SSEP would point away from ALS and to something else. so that, at least, is good news!

good luck with everything-

Sandra

 

[RedFlame]

Hi Everyone,

I wanted to update and tell you that I had the EMG done and have the results. The neurologist said I have Neuropathy. She ordered some blood tests incl. to have a complete metabolic panel etc.

She was unable to get responses to some areas apparently from neuropathy. She told me I also have carpal tunnel and ordered these huge braces. I have no pain in my wrists.

I am assuming that this rules out ALS---hopefully.

I want to thank you all for responding and offering support and answers.

Red

 

[ktmj]

I think it does Red. There are specific clinical and electroclinical signs that indicate MND versus neuropathy.

We are happy for you at this point. Best wishes with a challenging, but much less threatening, diagnosed.