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curious vincent

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Hi All,

I've read through some of this forum and I admire the courage displayed by many who have been diagnosed and are so willing to take the precious time to share here.

I've been "not quite right" for about 6 months now. It started with some overall fatigue and muscle cramping in my hands. About 1 month in, the fasiculations began. They were very random and all over at first but have progressed a bit to "pop up" more often when I use or stretch a particular muscle. I've developed a noticable atrophy in my left hand on the top side below my pinky and ring fingers. The fingers still work, but are bending a bit and have become somewhat clumsy. My right hand has also become stiffer and a bit weaker in the thumb and wrist area. It is also a bit more clumsy when I try to operate a cell phone or pick up things with just my thumb and index finger. There seems to be a slight atrophy developing in my right palm at the Thumb muscle. Also, it has become much harder to hold onto anything weighty such as my kids for any length of time. As both my hands and arms seem a bit weaker overall - I do not have any noticable leg issues so far.

I've been to 3 Neuro's including an MND Specialist in RWJ Hospital Department of Neurology in New Brunswick NJ. Had numerous blood tests an MRI and 2 EMG's. The 2nd NCV revealed a slight neuropathy in my left ulnar nerve.....neither of the EMG's revealed any muscle damage. I do realize that the Neuropathy could be causing the muscle atrophy...however I have no pain or tingling and this does not account for symptoms in my right hand. The Neuro's seem to think that I do not have ALS, however I remain very concerned as my symptoms seem to be progressing ...even if it is a slow progression.

About a month ago I began noticing that it seemed more difficult for me to open my mouth wide to take a bite of something like a sandwich or hamburger. This was followed by my jaw clicking on the left side and some facial numbness on the left cheek that comes and goes. Also twitching began in my neck. I do not have any pain associated with my jaw and face. The clicking seems to be getting a little worse each week.

On top of my hand problems...I've become a bit freaked out by my Jaw & Cheek issues ....has anyone experienced this type of problem? I'm a 45 year old male.

Thanks
 

Mark

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Hi Vincent,

I have had a variant of progressive muscular atrophy called bibrachial amyotrophy which has been progressive over the past four years or so. I have frequent clicking or chattering of my lower teeth against my upper. At times there is a tightening in my jaw when I start to chew after not using my teeth for a while. I have no solutions and no medications including real Rilutek or lithium have been helpful. Good luck.


Mark
 

olly

Extremely helpful member
Joined
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Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
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uk
hello

i started with bulbar symptoms 18mths ago but at the begining of the year they progressed alot more.
i can only tell you i have jaw stiffness/weakness,chewing has been a major problem.
fasic's and spasms in my right lower face/jaw and like someone else said i get a tightening feeling in my right jaw.
some slight swallowing and speech problems.
sorry i can not give you any answers.
take good care.
caroline:)
 

laurel

Very helpful member
Joined
Jul 19, 2007
Messages
1,431
Reason
DX UMND/PLS
Diagnosis
07/2007
Country
CA
State
BC
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Vancouver
Hi Vincent,
Have any of your neurologists mentioned the possibility of CIDP? Some members on the CIDP forum have mentioned jaw weakness as part of their symptoms. My husband has CIDP that affects all four limbs and he has significant atrophy of his right hand. He has faciculations in that right arm, gets spasms in the hand, and in his thighs, but he has few sensory symptoms. He is treated with monthly IVIG. Good luck.
Laurel
 

curious vincent

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Aug 9, 2008
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Reason
Learn about ALS
Country
US
State
NJ
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West Orange
Thanks for all your quick responses.

Laurel...I had not previously known about CIDP and just did a quick Google on it. Very interesting thought and I hope the best for your husband. So far since the Doctors seem to acknowledge that something is amiss, but since the tests have not shown much (especially the routine motor office tests and the EMG) they have not expressed a great sence of urgency. The last one indicated that what I have seems to be minor. I remain a bit sceptical to this as although my strength loss might not show overtly....I do notice it when I am at the Gym or do any heavy chores/lifting. I guess it is wait and see....but if it is something like CIDP that is better treated up front....this makes me more concerned for some type of action.
 

laurel

Very helpful member
Joined
Jul 19, 2007
Messages
1,431
Reason
DX UMND/PLS
Diagnosis
07/2007
Country
CA
State
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City
Vancouver
If it happens to be CIDP that you have, indeed early treatment is important. My husband was initially diagnosed with Carpal Tunnel, had surgery with no benefit, and by the time he was referred to a neuromuscular disease neurologist he had irrepairable damage in his right hand. Had he gotten treatment in the beginning, he wouldn't have lost about 50% function of that right hand. His atrophy and lost of strength crept up on him. Be really pro-active Vincent and ask lots of questions. We regret not being more assertive and that we didn't insist on a second opinion. Knowing what I know now, I would have insisted on a referral to a neuromuscular disease specialist right at the beginning. We just assumed that because a neurologist diagnosed Carpal Tunnel that he was correct, and the surgeon went right along with that diagnosis. Yet when my husband got frustrated and went to a second hand surgeon for a second opinion (prior to the neuromuscular disorder specialist referral) that surgeon knew immediately that my husband's symptoms were not compatible with Carpal Tunnel. That surgeon did a hurry up referral saying my husband had some sort of progressive muscle atrophy. We're too conditioned to think that because a doctor says something he is correct.
Laurel
 
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