Re: Symptoms - Again

Posted By Jim on May 10, 1999 at 10:31:30
You've been a wonderful source of information and I hate to keep bothering you but I have another problem that I'm hoping you can help me with. After reading many posts in this forum and posting myself I intended to obtain a referal to a Movement Disorders Specialist. Easier said than done. I guess my own GP wasn't fond of me self-diagnosing myself. He suggested that I take some arthritis medications and see what develops. I've been down this road before. It leads nowhere. I guess I'd like to give you a little more details on my sysptoms and see what you would recommend. I'm sorry, but this could be a little on the long side.

I'm a 53 year old male. I've encountered neuromuscular problems for about 33 years. The first problem I ever had was a back problem. That started about 33 years ago and is with me today. It has been diagnosed as severe muscle spasms. I've seen both orthopediics and neurologists. I've had MRIs of the back and neck. All tests have indicated severe spasms. I usually have 1-2 back eposides a year. Most episodes leave me with limited mobility (need brace and cane) for 1-3 days.  A severe eposide can put me on my back for 1-2 weeks. I've only had 3 of those over the years, thank God. The strangest incident I've ever had with my back was last year. I was in the middle of a 1-3 day eposide. I was crossing the street (brace and cane in use) when I slipped off the curb. This jarred my back quite a bit. Interestingly enough, the spasms immediately released and my back just felt sore. The muscles retightened about 3-4 hours later. This was quite a surprise.

About 20 years ago I had a nastty pain in the left shoulder. It was diagnosed as a pinched nerve in the elbow. The nerve was moved (ulna nerve) and everything was OK till about 10 years ago.

At this time I developed muscle spasms/cramps in the left hand. The left thumb would move towards the palm and 'lock' in that position. Sometimes the left forefinger would also lock in a straightened position. I would have to open the fingers with my right hand and keep them held open until the spasm/cramp passed. This movement of the thumb could be easily induced by using something like a game controller. After seeing an orthopedist and a neurologist I was put on a regime of physical therapy. This only seemed to worsen the condition. I now (3 years later) started to develop muscle twitches in the left shoulder, left forearm, left bicep and at time the left side of the neck. That is the condition as it exists today.

During one of my many attempts to resolve this problem I contacted the orthopedist/neurologist team that handled one of the professional sports teams in my area. Figured if I was a lefthanded pitcher making 6M per year, someone would be able to tell me what was happening. Almost, but not quite. After a battery of neurology tests (MRI, EMGs) they still weren't sure. The muscles were spasming, but they weren't sure why. I one case, the EMG testing actually induced the arm spasms to occur. I think that the neurologist may have mentioned dystonia at the time, I'm really not sure. I was put on dylantin for a while with little results.

It's now 1999 and the problems still persist. They have actually spread a little over the years. besides the back, hand and arm problems, I now seem to have developed a neck problem. If I tilt my head back I get pain through both shoulderblades and a 'gripping' feeling in my right shoulder.

None of these symptoms are life threating and not as severe as many that appear in this forum. They are very annoying. I have learned to live with them and have actaully compensated for some of their effects. But I would like to see if I can resolve them. I'm also a little concerned that they appear to be progressing. I'd like to see a specialist, just not sure what type.

Thank you for your time and patience.      

[CCF MD mdf]

Posted By CCF MD mdf on May 10, 1999 at 12:56:10
The back problems can be anything - the most common source of back spasms and pain is degenerative spine disease, but dystonia can certainly produce such problems. So that part of your tale doesn't really provide many clues.
In my practice, I scan the symptoms and signs for the one that has the fewest possible explanations, then use that as a starting point to see what else fits. I think that is a common strategy used by most physicians, and in neurology it is almost a necessity.
The key in your case is the hand movements. The unusual position of the thumb and forefinger, and the fairly stereotyped stimulus, really suggest dystonia. I could be completely off base, here, of course. There is no substitute for seeing this in person. For a movement disorders specialist, dystonia is pretty straightforward to recognize, but it is missed often by people without that specific training.
It's a shame that your GP won't refer you. We don't ask for patients to diagnose themselves, but just to be good observers. If you have an angle on a puzzling chronic problem that no one has ever thought of, it isn't necessarily self-diagnosis, just the next place to look. Soapbox: it is often far cheaper (to the insurance company, HMO, government, patient, etc) to send someone to a specialist for a diagnostic opinion than for MRI or other expensive tests. The specialist can often recognize the problem and either not have to order tests or at least be able to focus tests appropriately and minimize how many are done.
If you wish, you are welcome to come here for a second opinion. Call 800 223-2273 and ask for neurology appointments. You might ask for a movement disorders specialist if you'd like to chase down the possibility of dystonia. If it turns out to be clearly not, then the doctor here can suggest an appropriate specialist.
I hope this helps. CCF MD mdf.











Follow Ups:


Symptoms - Again Jim 5/10/1999
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Re: Symptoms - Again CCF MD.... 5/12/1999
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Symptoms - Again Been thereIt does sound like dystoni 6/09/1999
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Re: Symptoms - Again JIm 6/10/1999
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