Old 10-18-2012, 04:46 AM #76 (permalink)
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Default Re: Diagnosed with Benign MND

mazzi: no, I have no hot spots. Its like few in shoulders (10 minutes nothing), several in thigh (5 minuts nothing), one in biceps (10 minutes nothing)..etc.
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Old 10-18-2012, 05:29 AM #77 (permalink)
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Default Re: Diagnosed with Benign MND

Bliz, it's more or less like my situation - but I have an hotspot in my calves
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Old 10-18-2012, 06:42 AM #78 (permalink)
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Default Re: Diagnosed with Benign MND

mazzi: so it does sound like textbook BFS, why are you doubting? I have read your last EMG was fine. I am doubting just because of my tongue fasciculations (rarely but I do get them).
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Old 10-18-2012, 07:30 AM #79 (permalink)
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Default Re: Diagnosed with Benign MND

My fasics are quite random. They are much much worse when I am stressed.

I get jolts where my whole arm will jump. Lots of rippling when I engage a muscle such as quads.

Wright has looked at my EMGs and explained what they mean.

I will be more comfortable when I have my latest report as this clearly confirms to the neuro that it is some form of MND.

My understanding is MnD in the UK encompasses many sub conditions, one of, which is ALS. I am assuming that I have some form of MND but not ALS (not confirmed as this anyway).

That is my theory for now, I could be wrong but I have all the hope in the world.

Ian
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Old 10-18-2012, 07:43 AM #80 (permalink)
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Default Re: Diagnosed with Benign MND

I can have quite random twitches. Some nights my quads thump and can keep me awake.

My left arm jumps quite randomly but it is very noticeable.

Both calves can twitch like mad.

Biceps have settled down now but three weeks ago that is where it was all happening.

The ones near my thumbs (both hands) look like ants under the skin.

I think my case is also interesting as I can cramp pretty much any muscle on demand.

I have a well respected professor as my neuro and she is the one in the UK you are sent to when noone else seems to know what to do with you.

If nothing else, she is very thorough and the fact she has me on Riluzole says to me she is doing the right thing at least as a preventative should these symptoms develop further.

Ian
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Old 10-18-2012, 07:49 AM #81 (permalink)
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Default Re: Diagnosed with Benign MND

Bliz, yes last EMG was fine but others two no. Just check again my report on the first one I got almost 2 years ago, they found fibs and sharp waves too..What is strange about my twitching is that I can (besides the calves' one, which are present almost 24/7) induce them bodywide just with a simple mucle strech..very seldom they start by themselves...the night is a nightmare for this reason...any time I turn around in my bed the firing starts (legs, arms, back..) and after a couple of seconds they stop...does this happens to you as well?
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Old 10-18-2012, 08:03 AM #82 (permalink)
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Default Re: Diagnosed with Benign MND

Mazzi
I can get mine started off in a similar manner. Similar to the cramping. Flex a muscle, hold it, cramp.

I would love to label mine as BCFS, in fact that was my diagnosis by another neuro in January.

On second EMG in July, it was reported I didn't meet the El escorial score for MND.

Neuro was working on her heart of hearts theory until EMG on Tuesday which she now says the neurogenic abnormalities support an MND diagnosis.

I don't understand the clinical weakness testing. Surely some of this is subjective based upon person conducting it. Dr that did it on Tuesday has some concerns but he was really strong, physio yesterday DDR them slightly differently and I got full marks on each test.

I am not as strong as I once was, something feels strange but everything is working.

The latest symptom is night sweats, which the Prof says that they are discovering this as a common symptom of people with mnd.

Ian
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Old 10-18-2012, 08:28 AM #83 (permalink)
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Default Re: Diagnosed with Benign MND

prattstar, so you're saying you can induce your twitch same way as i do?

What i don't understand is if u are phisically ok and by saying so I mean no weakness, no muscle wasting no brisk reflexs and so on... how could the give you a MND diagnosis? only because your dirty EMG? As far as my (little) understanding - the finding on your EMG should be coupled with a clinical evidence that something is going on...
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Old 10-18-2012, 08:49 AM #84 (permalink)
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Default Re: Diagnosed with Benign MND

Mazzi

I have brisk reflexes and have lost a lot of weight some of which is most likely muscle bulk as I stopped going to the gym 4 days / week and a general loss of appetite due to what I believe to be enormous stress from this process.

I have no clinical weakness. However I feel I have lost a little dexterity, nothing I can put my finger on but things don't feel right.

I don't want to offend those here that have real weakness and maybe I am heading down that road, we just don't know.

I could write war and peace on my diagnosis process so may have missed something or not even thought of something that could be relevant.

I am waiting for my latest clinical letter and EMG report as my reflexes were tested before the emg and I guess will features in the EMG report.

I am sorry If I have missed something. There is loads spinning around in my head at the moment and I am just coming to terms with these terms and how they relate to MND.

Ian
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Old 10-18-2012, 09:25 AM #85 (permalink)
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Default Re: Diagnosed with Benign MND

Dear Ian- Beign MND is indeed ALS, just the British terminology. If you're on Riluzole you have ALS. Your neurologist would never have put you on this medication if he didn't think you had ALS.

I know this because in Canada both terms are sometimes used, especially if you're seeing a British neurologist. I'm Scandinavian hereitage and have run across that name Beign MND in contacting the Danish ALS Society.

And yes ALS can start in the early 40's. I don't remember the man's name but he was from British Columbia, Canada and was diagnosed in the 1990's. He was the first Canadian to write a book on his life with ALS. He was diagnosed in his early 40's and because he worked in a marine he believed his ALS was a result of poisoning from gasoline. You might still be able to get a copy of it. Because it's written by a man I think it would be good for you to read. He discusses his difficulty with ALS and the various stages one goes through but like I say from a man's poistion.

Trust your doctor, it sounds like she knows what she is doing! In one way you're lucky, I don't mean to be trival but to get an early diagnose- you'll have more support in getting equippment you'll need but more importantly you'll be on the medications earlier and will benefit from that. It sounds like you have Limb Onset and that means you will likely have more time to live then someone with Bulbar ALS.

Remember Stephen Hawkins was diagnosed very young and he has lived almost 40 years with ALS.

Take it slow Ian and don't try to understand everything over night- because we just drive ourselves crazy when we do that. Deal with each day at a time but with some understanding of what's to come. As time goes on you'll begin to accept some of your physical changes. We fight to keep what we have but there comes a time when we need to let go a little- but you're not there yet. You still have lots of life to live so don't spend it all being afraid. If you have a family spend all the time you can with them. Share with them your difficulties and fears and you won'y feel as alone and scared.

I'm sorry you need to deal with all of this. Take good care of yourself and by all means try to find some happiness somewhere in your life.

All the Best Karin Bolette
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Old 10-18-2012, 09:47 AM #86 (permalink)
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Default Re: Diagnosed with Benign MND

Thanks Karin for your comments and clarity.

I have just read some of your other posts.

I intend to live each day, I have a beautiful 2 year old daughter that I absolutely adore and my wife is just the most caring and supportive individual.

I guess like most people first diagnosed with the condition that I immediately thought the worst.

I have every faith in my neuro, she is the best around.

I live in hope but with a grip on reality.

Warm regards

Ian
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Old 11-15-2012, 04:41 PM #87 (permalink)
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Default Re: Diagnosed with Benign MND

Prattstar,
I was diagnosed with ALS in 2008, since then I have been again officially diagnosed with Adult Spinal Muscular Atrophy. It is a motor neuron disease and it is benign is what my neurologists has told me. It is a pure lower motor neuron disease and it has been a very slow progression, I do have atrophy in my lower left leg and a dirty emg. However I can't complain too much because I still walk and live a normal life even can still play golf. Is it possible that you have been diagnosed with this? Check out the Jennifer Trust webite. Good luck.
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Old 11-15-2012, 08:02 PM #88 (permalink)
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Default Re: Diagnosed with Benign MND

Kansastom....how was this diagnosis made? My PALS has a very similar circumstance and symptoms.


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Originally Posted by KANSASTOM View Post
Prattstar,
I was diagnosed with ALS in 2008, since then I have been again officially diagnosed with Adult Spinal Muscular Atrophy. It is a motor neuron disease and it is benign is what my neurologists has told me. It is a pure lower motor neuron disease and it has been a very slow progression, I do have atrophy in my lower left leg and a dirty emg. However I can't complain too much because I still walk and live a normal life even can still play golf. Is it possible that you have been diagnosed with this? Check out the Jennifer Trust webite. Good luck.
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Old 11-16-2012, 01:13 PM #89 (permalink)
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Default Re: Diagnosed with Benign MND

SMA is actually what Stephen Hawking has too (though they didn't know it back when he was diagnosed originally), it is why he has lived so long. The chief difference early on is the lack of UMN symptoms - hyperreflexia, spasticity, etc. That becomes more complicated if someone has BFS and SMA, though, because the BFS can cause hyper reflexes. So in that case you'd have to wait and see how it goes, which is where Ian is at however you cut it.
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Old 11-16-2012, 02:23 PM #90 (permalink)
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Default Re: Diagnosed with Benign MND

Back in 2007 I noticed that I could not move left big toe, at the time I didn’t know but this was the first sign. In the next year I begin to loose muscle in my left leg calf, this concerned me and my family physician. After a lot of MRI’s, catscans and emg’s, it was clear that I had a lower motor neuron problem. I have no UMN signs, reflexes are diminished or normal. I have an extremely high arch in my left foot, very similar to what occurs in CMT. In April of 2008 on my first visit to the neurologist, (previously I went to spine specialist and physiatrist (MD’s)), after a 20 minute exam I was diagnosed with ALS. Over the next 2 years I went to the MDA clinic and the University of Kansas medical center. Was told it could be monomelic amyotrophy and it could be a variant of CMT even though my nerve conduction tests did not support this. After fours years with very little progression I am officially diagnosed with Adult SMA. We now believe my father has this also and his father had it too, we always thought they had a severe case of rheumatoid arthritis. It has been a long journey to get this diagnosis, I am sure everyone can relate.
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