Diagnosed with Benign MND

[prattstar]

EMG done. Results tomorrow. Resting now, completely exhausted.

Thanks for your kind words and thoughts, it means so much.

Ian

 

[momap53]

Are you staying in hospital overnight again while you wait for results?
So glad the EMG is done. Hoping for good news for you.

 

[prattstar]

Deb, no different hospital. It took some planning to get discharged early from one hospital to go to another for the emg. Am restingin my own bed now. Sheer bliss. Will post how I get on tomorrow.

The person doing through emg should be a world poker champion, she gave nothing away in her facial expression and when I asked how it went she said we had some good readings. Now needs to compare with previous reports and will send results over to neuro for tomorrow's visit.

How it went, I can't tell, but I am feeling good it is over.

Ian

 

[Luke]

While I know it might be frustrating not to get that immediate feedback while she was doing the EMG, in a way I think that's the sign of a responsible, methodical doctor. She doesn't want to draw any conclusions until she can mull over the results and such. Sounds like you're in good hands. You're about halfway through this week, buddy - keep pushing through. We're all rooting for you.

 

[prattstar]

Day three and d-day.

Saw neuro today, she is maintaining that I have a slow progressing form of MND.

She said the EMG has reported neuro degenerative changes consistent with MND.

I have asked for a copy of her notes today and a copy of my EMG to be posted to me.

My clinical exam was very good. 5/5 on all strength tests, 110% lung capacity? But the EMG is what is giving her the proof that she needs.

I asked which form or how it is likely to progress and she said she simply doesn't know.

She did say it wasn't the aggressive form and that it is likely to continue as a slow progressing form.

When I get the emg and her letter to my GP I will have some more info.

She is going to keep monitoring me but it seems this is how life is going to be for the foreseeable future.

I just don't understand this disease and it would seem I am not alone.

I am working on the premise I have something wrong, it is early days and I have an atypical form of MND.

Warm regards
Ian

 

[hjlindley]

Ian you have my sympathy. It took them a long time to diagnose me yes I had the high lung capacity as well. Mine is distal onset and my hands are driving me crazy. My left ankle is unsteady but nothing a good ace bandage wrap can't Support. The good news is that if it started slowly it tends to keep going slowly. I described mine is the Chinese water torture of diseases. Good luck, we are all in this together.

 

[Luke]

So right now it's up in the air whether I've got some kind of slow-moving MND or a myopathy (the upcoming muscle biopsy should make that pretty clear), but one of the things my neuro mentioned was, if it is an MND, there's one called Kennedy's Disease that moves really slowly and is usually not fatal. I guess it typically runs in families but sometimes people develop it with no known family history. It only affects mem, from what I've read. Anyhow, not sure if your doc has mentioned that one, but it couldn't hurt to ask. They can test for it with a blood test, but they'd only do so if they had reason to think it was a possibility. By no means trying to suggest a diagnosis, but it was mentioned to me so figured I'd share it. I read up on it and it doesn't sound like a picnic, for sure, but slow-moving and not fatal is a step in the right direction at least. Good luck.

 

[prattstar]

Luke, I wish you well on your diagnosis process.

Thanks for the info on Kennedy's disease, it was on my shopping list of questions yesterday.

Professor is saying that I have some form of MND but can't/hasn't/won't elaborate on a variety.

I am really confused. I can only work with her and see how this develops.

She is an international specialist in MND, so she knows what she is looking for.

Thanks hjlindley for your explanation.

I am on the wait and see roundabout.

Since I am 42 I am wondering If this is something that may not have been picked up for a few more years to come as I don't have any other indicators (weakness).

What a journey, most confronting thing yesterday was actually seeing people with advanced stages of MND, whilst I am thankful I am not in their position yet, I had Managed to put my head in the sand until now. The other thing I noticed is that they were considerably older.

Thanks folks, I would be wandering aimlessly in the woods without this site and the special members that make up the forum.

From the bottom of my heart, thank you.

Ian

 

[Bliz]

Kennedy disease would fit, often starts with cramps, fasciculations and those are most visible around the mouth and the tongue. However, blood test should reveal elevated CK. Definitely something to discuss with MND specialist, though.

prattstar, may I ask you? (as I am also long time twitcher and scared now..). Also you have absolutely no other objective symptoms than fasciculations and cramps?
I just never heard about such a case if the EMG already detected degeneration, there should be its manifestation in form of weakness. Did they detected chronic denervation and inervation on the EMG?
I am really sorry but its good to hear that you are fully functional. There are rare cases of something between ALS and BFS, the actual paper was called somehow "Benign fasciculations: an intermediate syndrome?". A little hope..

 

[prattstar]

Bliz

I don't mean to alarm you all I can do is comment on my own symptoms.

I have lost a load of weight, not surprising with the stress that this has caused. In have been having cramps for nearly 2 years and twitching/fasciculations for a good 12months.

I have had 3 EMGS that show fasciculations and neurogenic abnormalities. I don't yet have my latest EMG report.

I have seen the report you refer to, I am not sure if you are on the bfs forum but I joined when first diagnosed and upset a few twitchers as I clearly had no idea what I was dealing with. Rain dog sent me a link to it.

I am going with the fact I have MND (i have to accept that for now, otherwise it will eat me up), i clearly dont have a textbook case but my emg gives my experienced neuro a heads up that this is how she believes it will manifest.

I wish you well. It seems that this disease has many disguises and presents in so many unique ways.

I am not giving up hope, it may be all I have.

Ian

 

[Bliz]

prattstar, if you do not mind - where did you fasciculations started? All over your body from the beginning?
EMG with only fasciculations is normal for people with BFS, so sorry if they found something else but the Kennedy is a good idea and would go tested for it. Its actually called benign MND as it does not usually shorten lifespan.
As for BFS forum. I was there but people there refuse to accept anything else than "no weakness=no ALS" so I am not going there anymore, the discuss only facts they like, not other ones.

 

[mazzi]

pratt star, I am on the same boat - I have been twitching for almost 3 years now, no weakness, atrophy or any change on reflexes but a couple of dirty emg which showed large MUAPs (signs of reinnervation) and fasciculations in all my muscles - yet the ALS specialist, which I happened to see just a couple of weeks ago for a visit (clinically everything all right), said no ALS.

 

[prattstar]

Blizzard, I had a similar experience on the other forum, that's why I came here, much more open minded around here. I had some nasty comments on other board which got removed but made me really upset as I had no idea what I am dealing with and was looking for support.

My fasciculations started in biceps then quads then absolute thumpers almost anywhere. I have fine ones in the muscle near my thumbs.

My EMGs show fasciculations but also some denervation and reenervation and increased MUAPs.

I am awaiting the latest report so will update when I get it.

The professor is still calling it benign MND.

I don't have any clinical weakness and haven't had any significant changes other than weight loss since this all started.

Best wishes
Ian

 

[Bliz]

prattstar, yeah, on the BFS forum, they will tell you its BFS because you do not have a weakness anywhere. So you have fasciculations like all the day, without a rest? Sorry for the question but my patter was very similar. However, it started 6 years ago and I am still OK.

 

[mazzi]

So you have fasciculations like all the day, without a rest?

Bliz, do you?