Old 09-02-2008, 04:06 PM #1 (permalink)
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Default 25, Male, Convinced I have MND

Hello to all,

I am a 25 year old male, currently studying nursing / human movement science - looking to enter med school after I graduate. Around 8 months ago I notice consistent fasciculation of my right bicep, more so the medial belly. The twitch went non-stop for weeks and was unfortunately occurring during a Neuroscience subject I was taking (with regards to human movement disorders). I took a particular interest in this subject and I suppose have found my calling with regards to my future academic pursuits (neurology). Unfortunately, I knew the in's and out's of fasciculations, and their associated diseases. At first I wasn't too phased when I had to study MND / ALS, but eventually began to fixate on such a Dx for my fasciculations (I do have an anxiety problem). Well, since then I have noticed constant fascics in my right and left calves / feet. Buzzing sensation (as if a few muscle fibers are vibrating together - short lived, sometimes prolonged). Fasciculations have become diffuse with regards to the rest of my body, yet remain fairly constant in my legs. My right calf as of a couple of months ago began to feel weaker. I now wake up with a sore left calf each day due to this muscular difference in strength. I have experienced spasms, muscle aches and pains and cramping - particularly after a long run.

Recently I was tapping on my legs (am a drummer!), and noticed that I could create a fairly easy knee jerk reaction just by simply tapping on the patellar tendon (even when slightly taught). Once I researched possible causes of this particular symptom, I tied them all in together and am now convinced I have early MND.

Things to note:

Was put on SSRI's previous to the 'hyperreflexia symptoms'
Yes, stress and anxiety tend to exacerbate my twitching and could possibly explain all symptoms (my doctor is sure it is all anxiety related).

MRI normal
Thymus CT scan normal (MG possibility)
EMG normal - apart from a few fasciculations in my right calf muscle. No fibrillations, although when testing my right calf, the neuro commented on the fact that my muscle took a little while longer to kick in.
NCV tests normal, except for the fact that my right leg was returning faster than my right arm.
Bloods - every single one imaginable. All normal except for the serology of my past 2 which came back with elevated levels of the ACh antibodies. In fact, my second test came back with a higher result.
Physical / neurological exam passed very easily.

The Neuro thinks I may have Generalised Myasthenia Gravis, but needs more evidence - so now I am to play the 'waiting game' before administering a tensilon test. Both he and my Doctor say I do not have MND.

Yet, I am convinced I have MND and have already leveled myself in the 'acceptance' stage, and am already getting on with my life. It sounds crazy, I know.

Anyway, not too sure on what I am doing here, just stating that if after my appointment with a well known MND specialist in the coming months and further testing supporting a negative Dx, I would just like to let you all know that I will be pursuing my med career with an aim at focusing on MND / ALS research. I feel I was put on this planet to help people and have done so all of my life.

The emotional turmoil and stress placed on almost every aspect of my life from the aforementioned symptoms / self "Dx" and associated anxiety has indeed been a blessing in disguise. Regardless of whether or not I have MND, I am excited about each day and like I have said, have also found my calling (neurology / MND research).

My thoughts are with those and their families / friends out there in similar situations and those diagnosed with such a disease (which ever variant).

Take care and share your thoughts on my story as it is and feel free to ask questions.

Dave.
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Old 09-02-2008, 04:57 PM #2 (permalink)
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it sounds like mg with the 'ach' test you had done. I would go with that, I really would.

good luck with school

april
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Old 09-05-2008, 02:12 PM #3 (permalink)
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just wanted to offer my two cents.. I have been having some muscle problems as well and have not received a DX yet.


I was on SSRIs for about 4 years. I recently went off of them a few months ago (and that in itself is QUITE a process...)

I had twitching ALL the time when I was on them. Not saying that this is definitely your problem, but I had that problem and my doctor said that the SSRIs have been rumored to cause muscle spasms/twitches.

I would especially notice it after a few cocktails!

Good luck with everything from someone who is in your same boat right now!
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Old 09-07-2008, 12:56 PM #4 (permalink)
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It's a terrible boat to be riding Ibeyerl! Just coming off the SSRI's over the past week - the twitching has subsided somewhat, but is still present every now and then. Unfortunately I was twitching before I went on them. Not thinking about it is the best thing to do. I am so over over it, which has made me decide to move on. I am booked in for the repetitive NCV test in october, to see if the muscles fatigue, will let you know how I go.

Here's hoping it's MG.

Oh, by the way:

IF either MG or MND were walking down the street, I would punch them both in the face.

Take care all.
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Old 09-07-2008, 02:04 PM #5 (permalink)
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Dave, good luck with the NCV test. Hope you find it's MG (although that's no picnic, either ! That is one nasty disease to deal with) and get treatment going soon.

Your future patients will benefit from all the anxiety you have been going through, as I'm sure you will always be able to empathize with their fears. So many doctors don't have a clue

Good luck,
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Old 09-07-2008, 02:22 PM #6 (permalink)
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With the increase in AChR antibodies, my money would be on MG. Your twitches and hyperreflexia could be due to SSRI's. Anxiety could certainly be contributing to both of those too.

After 8 months of symptoms, you would more than likely have some muscle atrophy if it was ALS, which you don't mention. Muscle atrophy does not occur with MG (MG is NOT a denervating disease), unless it's due to disuse and that takes some time to be evident.

You're really jumping the gun on ALS. Relax. MG is very treatable and manageable, so don't worry about that.

Let your neuro do his/her thing. You definitely have age on your side, too.
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