One of two disease diagnosed: MMN or MND

[Mattshap123]

Hi All,

After 6 years of symtpoms, I finally have a narrowed down diagnosis, although it isnt pretty.

Today I saw the neuromuscular specialist as a follow up from my muscle biopsy of my left quadriceps. I have pretty severe atrophy of my peft quad. These symptoms had a rapid onset about 6 years ago. My entire atrophied in about 6 weeks after I started feeling weakness. This was accompanied by severe knee pain, which I now associate with the weakened quads. My EMG study showed normal MNC but reduced recruitment of my quads, especially VMO. My right leg remained unaffected until about two months ago. Out of nowhere felt the weakness come on. Found it hard to walk. Like a wobbly feeling. Hence why I got the muscle biopsy.

The results of the biopsy were scattered angular atrophic muscle fibers mixed with polygonal fibers. Diagnosis: "mild to moderate neurogenic changes." No myopthaic nor inflammatory changes. ALL other potential diseases have been ruled out (MS, radiculopathy, various auto immune diseases, GBS, ect.).

The specialist said it is either MMN or MND. He ordered a GM-1 blood test, which I have yet to get, and is working on insurance auth for IVig infusions. If infusions help, it's MMN, if not, is MND.

The part I'm having trouble with is he said if it's MND, since there's only lower motor nerve involvement and moving as slowly as it is over the past 6 years, it wont progress past my quadriceps. I can't find any supporting evidence for that. Everything says it's progressive. He said either way, this disease will not kill me. Is this gaslighting?

Although so many of my symtoms resemble ALS, the strange part to me is how long this progression is going. My left quad was the only muscle group invovled for 6+ years. My right is weak but atrophying very slowly. I do have pain, but it mainly revolves around my knees, which i attribute to weakened quads. My legs ache a lot. I do get muscle twitching thoughout my legs and glute muscles. Sometimes the spams keep me up at night. Im only 29 years pld. Symptoms began when I was 23.

Anyone have any advice if this sounds like MMN or MND? if MND, which type?

 

[Nikki J]

What are the credentials of your specialist? Are they in an academic level als center? I don’t know of an als variant that is guaranteed to remain in one leg for 60 years or so.

Have you had genetic testing?

MMN is certainly more likely in your demographic and doesn’t have significant umn signs. It can also happen without showing a conduction delay or antibody

Your description of your emg doesn’t really support an als diagnosis. Was that recent?

If you go ahead with ivig and it doesn’t help I would get another opinion from an academic level als specialist before accepting the diagnosis of als

 

[fo mnd slow pro]

Hi Mattshap123,

I'm on a similar journey.

Have had symptoms for 7,5 years, only some atrophy in groups of muscles in my left arm.

I freaked out about the diagnosis as I didn't get enough info and my neurologist had gone on vacation.

But eventually I was told the same thing: focal MND, lower motor neurons, slow progression, he doesn't see it going to my legs, doesn't see me dying from this.

I don't understand either and I'm still processing and have a lot of anxiety and see symptoms everywhere thinking it has already spread to my legs, other arm, etc.

I'm curious to know if you have anymore news.