just diagnosed with motor neuron disease

[buenosaires]

It's not a full diagnosis yet, as I am getting bloodwork done on Monday and will have to wait for those results.

But I'm really scared right now so I would appreciate any insight you all can give me.

I'm in Buenos Aires, and my docs speak English, but I think they may use some terms differently. They say I have "active cervical motor neuron disease." I can't find this term online. They seem confident, though they say there are many different types, and that it may not be so bad. But the few types of MND I've found online all sound pretty horrible to me. I know many people have it worse, believe me I am thankful to still be walking, and really I'm almost a 100%, (I was trying to fix some problems but after this last couple of weeks it would seem like a miracle to continue on how I am now) but I'm scared of what will come.

I also can't really find any info on "primary" or "secondary" MND, which is the terms my neuro used, saying that "secondary" would be something hormonal or some deficiency, to be looked for in the bloodwork and might be treatable.

From what I have read many of you will probably say this doesn't sound like ALS, because my symptoms are progressing so slowly, and in fact I haven't even noticed a progression in several years. But this diag is what two neurologists are telling me, not my own theory. And I'm only 30, with my symptoms starting at least seven years ago, but from what I've read sometimes in young men ALS symptoms can progress slowly. This slowly? That's one thing I'm hoping to find out here, just how slow can slow be? Has anyone heard of a progression this slow, to still be walking, talking, typing with almost not problem except a little inconvenience in typing, after so many years?

I've had an MRI, cervical, no contrast, and an EMG. The EMG showed fibs and fascis in every muscle in my arms, from shoulders down, "scarce" fibs in one lower leg, and no problem in my tongue.

After the EMG the neuro looked at my MRI and showed me how my discs are compressing my spine, she even said that at one point fluid is hardly getting through, and that this could be the problem. But then she read the note from the radiologist which said that nothing in the MRI should be causing significant problems. I went back to my first neuro and she agreed, saying this is a not a neck injury, this is motor neuron disease.

Okay, a little more background. I've had neck pain for 14 years, since high school wrestling. My neck always feels stiff, and sometimes it will lock up, with shooting electric type pain for a week or so. I do a lot of self massage on it to keep it mobile.

Over seven years ago I was lifting weights and noticed that my right hand was getting weak. I was doing curls and I had to put the weight down after a few reps, because of my grip. I'm stubborn and I was really into fitness then (boxing a lot, but just with bags, not getting punched) so I tried to push through it. I had also recently taken up guitar, was on vacation and was playing incessantly. So my forearms were constantly under siege. My right forearm started to hurt after a few days, burning inside, so I decided to rest it. I used my left hand to brush my teeth, wash myself, everything I could, and then my left forearm started burning and became weak. I bathed my arms in hot water, tried to rest them as much as I could, and the pain went away within a week or two. But my right hand was still weak. I don't think the left was ever quite right, but at least close.

It got a bit weaker, but I thought that was because I had lost muscle through not using it. I can still pick up a child or household items.

Oh yeah, I had had a problem where I would get painful cramps in my forearms, especially when lifting weights, but sometimes not. I would just hold onto the weight and ignore it. When I wasn't holding anything I'd pry my fingers open. For a while I was waking up at night with intense forearm cramps, but that hasn't happened in a couple years maybe.

I've long thought the neck was causing the arm problems. Oh yeah again, I first noticed finger twitches when I was about 20, and I read about Hawking and got a little worried, but it seemed unlikely and nothing else happened until the hand thing. I kept having finger twitches for a while, especially right index.

I thought I had a repetitive stress injury, and I didn't have money for expensive tests, and didn't think normal doctors are very good at helping that sort of thing. I did go to my family doctor and she offered painkillers! I said I don't mind the pain I want strength and mobility. Also I'm chronically depressed and stressed out, which leads to procrastination, and I've thought that was leading to tension in my body.

If I try to use my right hand it will quickly get sore again. My left will too, but not as quickly.

Eventually I started seeing chiropractors, acupuncturists, osteopaths, massage therapists, and nobody helped, maybe slight relief on the neck, but nothing for hands.

Okay, so I first noticed three years ago that I had almost no lateral movement in the fingers in my right hand. The index is okay, the middle and pinky can move a tiny bit inwards, weakly, and are flopped out at rest, and the ring finger has zero lateral movement. My thumb moves almost fine, but is too weak to spark a lighter or turn a key in a lock. That's been the case for years, and again if it's been progressing it's been very very slow.

My hands are really boney, the neuro says it's atrophied muscles, but I had never thought much of it because I've always been skinny and had really prominent knuckles. But looking at my right hand now (the right limb was more affected in the EMG) the dents between dorsals are quite deep, deeper than the left, I mean geeze it looks almost skeletal. I guess it just crept up over time so I didn't really notice it. People have shaken my hand and said, "Whoa, what's wrong with your hand, it just smashes!" It's like the bones are separate, I think I could slide my hand through handcuffs. I don't know if they've always been like that though, I thought so, but now I think not. No wonder I don't have lateral movement, the interosseous muscles are disappearing or gone.

I have essential tremor too, not a problem, not getting worse, started at 17, like my dad - he's had no problem with his or any of these other problems I have. I thought my various twitchings (I had a twitching eyelid for weeks when I was 19, and my left tricep was jumping up and down for a few days in my early 20s, oh, and I had a twitch on my left thigh after I started wresting, at 16.) I thought this was all related, but now considering what these neuros are telling me, I guess those may have been separate issues. Or, hopefully, there is some misdiagnosis here.

I hadn't noticed any new symptoms, I was sent to the first neuro by a doctor (he has a few medical degrees, in traumatology and stuff) who focuses on pain relief through acupuncture. He seemed pretty concerned about me, though he didn't speculate what could be wrong, and I still wasn't worried about anything like this. But the neuros gave me a shock.

I feel kind of like and idiot or jackass for writing this, because it doesn't sound like what the other people here have, but like I said the neuros are telling me I have MND, and I'm scared. I'm really sorry if this is a false alarm, I'll be really happy for myself of course, but really sorry to waste your time.

I've noticed the constant trembling in my right calf and shin this past week, I don't now if that's new or just in my focus now because of the EMG, and I'm terrified. I'm alone here too, in a foreign land. Thank you for your time.

-M

 

[rose]

Hi Buenosaires, & welcome to the forum. Understandably, you have reason to be concerned, between being in a country which is not your own, and what your doctors have said to you.

Aside from what you've mentioned, how are other parts of your exam, such as your reflexes, and coordination in general?

The best suggestion I have for you, is for you to do a search of a member's past posts concerning her husband, who indeed did have a compression of the spine, although the doctors originally insisted that the compression they saw on MRI could not be causing the problem. Her husband received a diagnosed of ALS, and it was only through tenacity that they were able to get the doctors to re examine his case, and it was found that he had an extreme problem in the thoracic area of his spine from an old ski accident. He had surgery since, but I do not know how he is faring, as Tracy (the wife, and member of the forum) has not posted in quite some time.

tag0620 is her user name here. I think you will feel better prepared to know what all actually goes into a valid diagnosis after reading the depth that they explored trying to get hard answers.

Good luck to you, and I hope others here will have something more concrete to offer you.

 

[buenosaires]

Thank you very much, Rose, I'll look that thread up immediately. As far as my reflexes and coordination, I don't know, the neuro didn't mention anything. I should have asked, but I'm not used to going to doctors, and I really didn't consider anything like this when I first went to the neuro and had my knees hit with a hammer. Just seemed like standard doctor thing. I can still hold a coin behind my head, drop it, clap my hands, and catch it behind my back. I just ran up eight flights of stairs without a hitch. I've been doing weird things like that at home and feel the same as I have for years.

 

[Tokahfang]

I don't have any great insight to offer, but I did want to send you some encouragement! There are lots of conditions that affect the motor neurons, and they aren't all as bad as ALS. So even if it isn't an injury, and the motor neurons in your cervical spine are in trouble, its not the end of the world, though generally it isn't treatable. As you said, whatever is going on, at least the progression is slow. In our corner of the woods, slow progression is where it is at!

 

[buenosaires]

Thanks Tokahfang. I do feel lucky for all the abilities I have, and I'm going to try to make the most of the situation no matter what it is. I just can't imagine telling my parents. Right now I don't want to tell anyone close to me, especially since the diagnosis is early. So I'm really glad I have people on this forum to talk to.

 

[charlottecorday]

I started to post but realized I had misread the first post.No, it was regarding your third post.If you ran 8 flights of stairs, you do not have ALS. ALS does not run.That is what I have been told, that is what I have read.I believe it to be true.

 

[buenosaires]

Okay Charlotte, thank you for replying. But didn't John Blais finish a triathalon with ALS?

 

[Alyoop]

Hey there
Not a lot to add except something that may be helpful. If a joint is moved by a twitch (as in your twitching index finger) then that is called myokymia. I had a huge amount of these twitches that I was told to disregard (they have almost completely gone since going on Baclofen, interestingly). Myokymia is present in other neurological problems, including Multiple Sclerosis rather than ALS.

There are radiologists that are not good at reading neurological stuff on xray, believe me, my husband(neurologist) always reads his own patients MRI's as they are often overstated or understated, so it is good that your neurologists have had a close look at your MRI. It is a concern that you have not had a Gad enhanced MRI, which you will really need, especially to rule out conditions such as MS. Sometimes spinal and brain lesions need the enhancement to make them obvious.

The question of your spinal stenosis is interesting and needs to be looked at, as the stenosis could cause your symptoms, especially the atrophy and weakness.

It is so very difficult with these neurological problems, as they often just do not fit anywhere, and it takes so much stress and time getting the jigsaw complete.

I have had no easier ride even tho I socialise and am married to a neurologist. It just sucks!

I have probably just confused you more, but due to the very longstanding issues it could well not be ALS.

Best of luck
Aly

 

[buenosaires]

Thank you Aly. My neuros did look at the MRI, but they took the radiologist at his word. I know I have some symptoms that don't fit, but what scares me is that those symptoms might just be separate issues that I've been grouping together for years.

Oh, one other thing, when my neck is really acting up, it definitely provokes twitching in my hands, even bending my neck to one side when it's in pain will sometimes make a finger twitch. But neither neurologist is interested in it.

I have the number for a MND specialist, I'll call and make an appointment with him tomorrow.

 

[Alyoop]

That sounds like a very good idea.
They were not interested in my idex finger and hand twitches either, in fact my Doctor said it was reassuring that they were not fasciculations :mrgreen: Best of luck, keep us posted
Aly

 

[buenosaires]

Thanks again, I'll let you know as soon as I get some news.

 

[charlottecorday]

I should have said usually cause there are always exceptions.I guess you could be one but I'll hope not.Thanks for the education.Any others you know of?I had never heard of him, shows how much I know,huh?And you don't really have the diagnosed yet,as you say.Frankly, I don't think you are wasting yours or anybody elses time here.We all learn from each other.

 

[buenosaires]

Thanks Charlotte. I can't think of any other examples of running PALS, but I really don't know much about many specific people. But I thought if the onset in the the arms or tongue they might be able to run for a little while, especially in the slow progression cases. John Blais didn't have a slow progression though from what I can tell. I know he was gone within two years after the race, and was diagnosed only shortly before the race, but I don't know when his symptoms started.

 

[rose]

I believe that our forum member, Hal, (halfin) ran in a marathon shortly after he received a diagnosed. It seems like he did, if not, he continued training/running for a time afterward.

buenosaires, I hope you were able to search Tracy's posts, you can locate her by clicking on the community tab (above) then her username, once on her profile page, the statistics tab will have the choice to find her posts.

Another member that you could consider contacting is Wright. He is a professor who's knowledge base is in this field. He has been very giving of his time to those who need help deciphering medical test reports, etc. With classes just starting in again he's probably swamped, but he should get back to you as soon as he can.

 

[Blizna]

I would be intersted in your note that "ALS progresses slowly in young men" - I have not seen anything like that. Could you please provide more information? Or do not you confuse it with Kennedy disease? Which is very slowly progressing, men only version of MND (but usually not fatal).
To me it seems strange that you would have MND for more than 7 years.