[John M C]

Had been diagnosed with stenosis in ’16 and had was getting injections for radiculopathy discomfort. Early summer of ’20 developed foot drop and by late summer my lower legs were so weak my ankles would roll and I would fall walking on uneven surfaces. Saw a neurologist for EMG who recommended spine surgeon & 10/20 had lumbar fusion. Radiculopathy went away, but not foot drop/leg weakness. Saw another neurologist(at University) who sent me to another (their ALS specialist) who did every lab known to man, lumbar puncture, more EMGs, MRIs, CT scan, genetic testing, IVIG infusions, muscle biopsy and finally referred me to Mayo. ALS neurologist at Mayo did the labs not yet discovered to man, more EMGs (8 as of 2/24) and as of today still doesn’t really know what to do with me. No complaints of any of the Drs – they have been extremely thorough. My legs are emaciated, and my arms have begun to follow over the last year. I don’t have upper motor neuron symptoms, only lower so I don’t meet criteria for ALS. I have been slow progressing…in the eyes of neurologist, and I realize how fortunate that is compared to the normal progression of ALS. I have gone from walking to hobbling to hobbling with a stick to hobbling with a walker to using a power chair in 4 years. Slow by ALS progression standards. Best guess of both neurologists is that I have slow progressing progressive muscle atrophy.

I would be extremely wary of a neurologist who tells you they are “pretty sure” you have ALS. The seriousness of the diagnosis makes it something neurologists in that way. I have seen 5 and pressed them all very hard for a diagnosis of any kind. Also, I have connected with several individuals and read the stories of many others who began their journey with stenosis and as many others that have had a progression path that doesn’t follow the norm. It is absolutely imperative to advocate for yourself. Do your research and ask questions and get as many Drs involved as you are able to get to an answer.

I wish you the best!

[John M C]

Got it, Bill. Thanks! Add some mud flaps with those knobbies!

[John M C]

Thanks for the info. I appreciate the input!

[John M C]

Thanks, JT!

[John M C]

That’s great info, thanks so much. As i get further into the plan I will definitely be in touch.

[John M C]

Thanks, Mary. I appreciate your time in sharing. Video came through. I have actually looked into this one – price will definitely be a consideration.

[John M C]

Thank you all for the informarion!!

[John M C]

Thanks, Dagmar. I am sure I speak for all when I say your resourcefulness is greatly appreciated!

[John M C]

Thanks for your help!

[John M C]

This topic really hits home for me. I am at the point where I know deep down I should start to use a walker for safety, yet i don’t want to cross that line as it seems like a major milestone – it feels like I am giving up or giving in. I don’t want to admit defeat. I have had lots of falls, but none that were serious….yet. That will likely be my catalyst. I know the effort necessary to walk now is causing me lots of pain and I am sure contributes to the fatigue. But, I don’t want to give up walking til I absolutely have to. Part of it is a “pride” thing as I already feel like people are looking at me as I hobble around with a walking stick. A walker will draw more eyes. I own and have used both a walker and chair when traveling. I was very aware of the eyes. In my small town I fear it will draw the inevitable question “what happened to you” from those who I haven’t seen in awhile and the awkward explanation that follows. Another part of it is convenience. I can walk short distances and don’t want to unpack my walker from my car then put it back. I’m still working and I am already in everyone else’s way. My walker will make that worse. I want to put off relying on others as long as I can. Worst of all, I am stubborn!

[John M C]

Hmmmmm. The similarities continue. I had a neurologist recommended L4-S1 fusion done for foot drop as well. I have/had stenosis at multiple levels. As it turned out it was probably a good thing as it was difficult to convince anyone that there was more going on. I also find my self exerting to do simple thing like getting dressed. I get out of the shower and by the time I am dressed and ready to go I have a sweat going that makes me want to take another shower! Let us know if your pain appt leads to any viable options. I would like to pass it along to my Drs.

MND that does not present in the typical manner is very difficult to diagnose, and takes a long time. The good news being that it also tends to progress more slowly. I am sure you know all this too. I hope you get answers quickly! As Tom Petty said, The Waiting is the Hardest Part

[John M C]

I was undiagnosed until 2 months ago after nearly 3 years of procedures, tests, scans, labs, etc… sure you know. I am diagnosed with PMA as I do not yet have Upper Motor Neuron symptoms. I have had significant pain through out the process and have been told multiple times that NMDs are painless. Not mine. My muscles ache constantly and the pain seems to affect those muscles/joints most greatly atrophied with more consistency, although I do also experience pain in muscles that are not yet as badly atrophied. The area of greatest pain changes though out the day and affects both muscle and joints. Definitely worse the more activity I have, but I am not ready to stop hobbling around with my walking stick and give up working. It makes sense to me as I am asking muscles to do things(walking and standing) that they no longer able to do. Other muscles are taking over and trying to help and do things for which they were not intended. Stress is increased to those muscles, the connective tissues and the joints. It has been explained to me(in this community) that motor neurons aren’t involved in pain – that’s sensory neurons. So, I get that MNDs do not cause pain, but I can still get around – tho with difficulty. I am not trying to do much other than work, which was not at all physically demanding prior to my symptoms.

As for what helps, I have yet to discover the magic bullet. I am a pharmacist and have aggressively pursued treatments with my Dr. We have tried, cyclobenzaprine, gabapentin, duloxetine, diazepam, tizanidine and baclofen with no improvement. I currently take an NSAID (meloxicam) and mulitple Tylenol doses daily and tramadol as needed. I really am not sure if either one is doing anything as my pain continues, but I am reluctant to not take them. I also take tramadol as needed, but as it causes drowsiness I don’t get more than one dose in a day, and if there are after work/school activities I also skip it. I think it may help to a small degree… or maybe it’s the drowsiness! I have an appt with a Pain Mgmt specialist in October, so I am hoping they might have some other ideas. What does work for me is rest. I elevate my legs when I can. Massage is very helpful and I wish I could get one daily. At Physical Therapy I get stretched, but there is never time to stretch all the muscles that want to be, and my insurance makes it very difficult to get appts approved. I go weekly for 6 weeks, then wait 2 months to get approval for 6 more sessions.

Ironically, I posted on this topic a couple of months back wondering what others had experienced. While I received plenty of responses there really didn’t seem to be many people with the same or degree of pain I (we) have. Eric and Carol: I would love to hear more of your paths, symptoms, etc. If others have similar experience, please share them. As you can probably tell by my rambling, sharing is very therapeutic for me! Perhaps it will be for you as well!

[John M C]

I was formally given a diagnosis yesterday of Motor Neuron Disease-Progressive Muscular Atrophy. Felt a sense of relief that I at least know with what I am dealing. I know its a long haul from here.

[John M C]

Wow, that is eye popping!

[John M C]

That makes good sense Jean Pierre. Yet there are those for whom pain is an issue.

[John M C]

Hi, Howard and thanks! I am still able to walk some and I think that is definitely part of my problem as the more “normal” I try to be the greater the pain I experience. However, in the past I could spend the evening or weekend on the couch doing nothing and my pain would improve. Now its always there and there even with and during prolonged rest.

I appreciate your input. “Adjustable” is definitely a big part of it. Best regards to you.

[John M C]

Thanks for your response, Mary. While I have read many scholarly articles that describe ALS as painless (in addition to my Dr) there is clearly a subset of individuals who do, indeed, have pain as a major symptom. And, based on your support groups it sounds like its a fair percentage.  I am not sure why ALS specialists would make such a blanket statement as “ALS is a painless condition” since ALS is such a diverse condition with an array of presentations, rates of progression, and affects every one differently.

It is reassuring to me to hear it from those who have experienced it directly and I appreciate you taking the time to comment. I wish you and Bill the best and hope he finds relief.

[John M C]

Not at all. I appreciate your contribution!

[John M C]

Thanks, Bill. I appreciate any information I can get at this point in the process!

[John M C]

Thank you both for the response and info. Dagmar, I think overuse is directly related to my level of pain. Jean -Pierre, I will do some research into that area. Thanks again for the information!

[John M C]

Thanks Amanda

My father’s 1st cousin was diagnosed with ALS, but I have had the full battery of genetic testing and had no positive results. I am currently seeing a Neuromuscular specialist at Mayo Rochester, MN. I am not sure if they are an official ALS research facility, but I think they are in the thick of the research component of the disease there. I too am waiting for an official diagnosis.

[John M C]

My most recent EMG/NCS demonstrated low amplitude lower limb compound action potentials. Lower limb motor conduction velocities mildly slowed. No conduction block. It was positive for fibrillation potentials, reduced recruitment motor unit potentials with no fasiculations. Interpretation: “There is evidence of a chronic, diffuse disorder affecting lower motor neurons or their corresponding axons and no convincing evidence of a myopathic disorder.”

My upper body tests within the normal range on exam, yet it is obvious to me that I have lost and am losing muscle mass and that I am far weaker than I used to be. There doesn’t seem a way to account for someone who may have had a higher baseline strength to start with. In my hands I see bones, tendons and veins I could not see before which is consistent with the my feet. The “meat” of the palm of my hand is definitely reduced. I wish someone would have measured my wrists or forearms early on as I again see an obvious reduction in circumference of both. When I look in the mirror I see less muscle in my chest and shoulders. The muscle I have feels different. It is no longer firm and feels more like jelly. My skin is saggy where it wasn’t. Yes, there seems to be a definite difference between “perceived” and “clinical” weakness. I know my perceived weakness is subjective, but isn’t the Dr’s assessment of strength subjective too? They just assign a number based on their perception of my ability to resist them.

Sounds like you have done your research, but if you don’t have confidence in your Dr I would search for another. To me that is essential in medicine. I don’t understand why they didn’t want to reassess you 3 or 6 months after your initial visit. 16 months of waiting and wondering and worrying is way too long! I have been lucky that all the Drs at UW and Mayo have been excellent. At my first UW appt I also saw a resident before the Dr with whom I was scheduled to see came in. Seems to be the norm at teaching facilities, but since the initial visit I see just her.

I hope your 5/13 appt produces something positive. I would push for more tests as it doesn’t sound like they have pursued things very aggressively for you. As an example, the Mayo Dr knew the whole genome sequencing that I had done did not cover repeat expansion disorders(to my dismay). These are common in hereditary ALS. He ordered these and a kit was sent to me to do at home and send in – all for free as it is a sponsored test. Came back negative, but he wanted to rule out as there are treatments available for these patients. I wish you all the best and hope you find answers! Let us know how things go.

john

PS: I may repost my story this weekend and see if any more people respond with there own.

[John M C]

Bill- what specific make and model are you using? I haven’t investigated this option. That may be the way to go as I am already overwhelmed with the number of brands/styles/options/etc/etc of scooters. Seems like I am on my own to figure out what is best so I really appreciate your contribution and advice. The smart drive option definitely sounds like a good idea.

[John M C]

Lisa B- How long did it take to get your diagnosis? Did/do you have pain? I have been told NMD is painless, yet I have significant pain. I would love to hear more about your experiences.