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Date of last update: 10/04/2017.

Forum Name: Neurology Topics

Question: Involuntary muscle spasms dilemma

 hollyann - Fri Nov 21, 2008 4:20 pm

Hi I am a 45 yearold female having invountary muscle spasms in my arm shoulders and spine. Due to mri and blood tests being normal it is being put down to being pschyosomatic. I have been prescribed diazepam and amitrpline for this but they don't have any affect on the spasms. Have asked the psychiatric forum on this subject and they have said to ask this forum as they feel that you can answer why they aren't having any effect. Due to the amount of spasms involved I have now been prescibed with procyclidine. This has stopped the movements. Could someone tell me why the others did'nt work?
 John Kenyon, CNA - Thu Dec 04, 2008 10:12 pm

User avatar Hi Hollyann -

It is unfortunate that when diagnosis becomes difficult the patient is often classified psychosomatic (or psychogenic). The symptoms sound both odd and convincing. The fact that diazepam (a mild general muscle relaxant and all-purpose sedative) and amitriptiline (a tricyclic antidepressant frequently used as a muscle relaxant also) didn't work doesn't tell us much, because the essential cause of the spasms remains in question. There are plenty of reasons why this could be happening and some of them wouldn't necessarily respond to the simpler approaches tried first. The fact that procyclidine works tells us there is a physiological cause. The drug is a dedicated antispasmodic, you were having muscle spasms, so this makes perfect sense so far as it goes, and almost certainly takes the problem out of the "psychosomatic" pigeonhole. The problem you are left with is why you're having to take this medication, why the muscle spasms were happening.

I will go this far: you apparently have a neuromuscular disease or disorder. procyclidine is generally used to treat the tremors and rigor of Parkinson's disease. While your presentation doesn't sound like Parkinson's at all, mainly because of the site of the spasms, there is something in the broad spectrum of neuromuscular disorders that is causing this. It's clearly real. The other medications didn't work because they are not dedicated antispasmodics.

Have you received a comprehensive neurological workup including testing of nerve conduction and muscle response? There is a whole battery of testing and exams that should be done at this point to try and discover just what's causing the symptoms. They're controlled for now, but knowing what's causing them is every bit as important.

I hope this is helpful to you. Best of luck, and please follow up with us as needed.
 hollyann - Mon Dec 15, 2008 1:17 pm

I really appreciate that you have taken the time to reply to me. I saw a movement disorder specialist recently and he does not think that there is much wrong with me. I have however lost the ability to screw up my eyes. The specialist will be doing another mri of the brain and spine as well as a test for Huntingdons and wilsons and something called DPLA testing (don't know what that is). He does not think that any of these will produce any results. In the mean time my doctor has referred me to see a psychosomatic specialist.

I actually feel quite battered mentally between the two medical departments because I feel I am fighting the neurology to recognise that something is wrong and fighting the mental health for my sanity.

It was good to read your reply as it has brought some clarity to my situation. The muscle spasms have now subsided and I only have an occaisonal one in my arm so I have stopped taking the procyclidine.So far so good that the spasms in the spine and the shoulders havent returned. I can cope with the one in my arm on its own but not very well when all three are happening at the same time.
 John Kenyon, CNA - Mon Dec 15, 2008 2:10 pm

User avatar That's why we're here. :)

The good news (and there is good news) is that much of the spasm activity has stopped and also that you've been able to discontinue the procyclidine. So far so good for sure.

The bad news, of course, is that feeling "battered", which is also a very real thing and not so easy to treat, since it involves other people who one would hope could avoid making you feel that way. Hang in there. At least the movement disorder specialist is looking at things. (I have no idea what DPLA might stand for, but I guess we'll find out). I have my doubts about Huntington's, but Wilson's isn't outside the realm of possibility, and is manageable. It just doesn't seem like a good "fit", but again, we'll find out.

I think I undersand what you mean about having lost the ability to "screw up" your eyes. This is interesting. I hope note is taken of it.

I'm pleased if my response was helpful at all. Please stay in touch and by all means keep us updated. I'll be hoping your progress continues.
 hollyann - Wed Dec 17, 2008 10:57 pm

Hi John

You have helped tremondously. As you have gathered my symptons are not straight forward, however knowing that this is quite possibly neuromusclar, I have done some research and although its a stab in the dark I think that I may have found a possibility. I can only find one neuromusclar problem where you lose the ability to screw up your eyes and it is Facioscapulohumeral Dystrophy. This makes alot of sense as my affliction affects my right side and I am right handed some other things ring true as well but it doesn't exlain the involuntary muscle spasms unless it is giving me a form of epilepsy as my neck, shoulders and back go into spasm.

The two together would explain why things are so odd. I see my specialist on the 7th of January and will ask for me to be tested. will let you know the outcome.
 John Kenyon, CNA - Thu Dec 18, 2008 1:50 am

User avatar I'm glad my reply was of some help. You've also done some very intensive and well-reasoned research on your own. Facioscapulohumeral Dystrophy would seem to fit a lot of the consistent symptoms you've described. Of course as you also noted, this could be a form of focal seizure, and if it is, it's most likely Jacksonion, which is confined to a certain interrelated muscular group, which also fits.

I'll be looking forward to a further update once you've been seen. Good luck to you with this. I know it must be very frustrating. Hang in there.
 hollyann - Wed Jan 07, 2009 8:24 am

Hi John

Went to see the specialist today. There is definately is problem with my eyes and ankle but I am also losing my smile on the right side but says that they don't fit into any catagory. FSHD was ignored. He is testing for Lupus - exasperation !!!! but he is also booking me into a hospital for a day so that the various MRI scans can be done - good news.

I told him that procyclidine worked and that 1mg of Diazepam makes both of my legs collapse. I am hoping that he will think about the effect of the drugs and will see him in another three months.
 John Kenyon, CNA - Thu Jan 08, 2009 12:40 pm

User avatar Hello -

Well, the good news is you've been booked into a hospital and will get a more thorough going-over, which hopefully will lead to some discovery. This has to be extremely frustrating for you, and it probably is for your doctors as well, but no one can afford to drop the ball as this is a very big disruption in your life right now and is a problem you deserve to have solved. I hope the hospital stay sheds some new light on things. Please let us know how it all goes.
 hollyann - Fri Feb 06, 2009 11:22 am

Hi John

The blood tests for Lupus have come back negative. Can you still have Lupus if nothing is found in the blood?.
 John Kenyon, CNA - Fri Feb 06, 2009 12:37 pm

User avatar While lupus panel and ANA testing are not infallable, and sometimes do yield false negative results, this is fairly rare, so it is likely you don't have lupus. A follow up in a few months should probably be done, however, to reinforce the negative finding.

Keep us updated.
 hollyann - Thu Feb 12, 2009 2:12 am

Hi John

Thank you for answering. Nobody seems to have any ideas about what is causing my problems. Any advice on where to look would be appreciated. Apparently I have ankle dorsiflexor and hip flexor weakness which does not fit any particular neurological disease or disorder. My eyes are so sore. I am blinking too much and cannot look at things for too long as it hurts but the movement of the eyes is ok. I cannot forceably close them and I do get frequent small nose bleeds. I get alot of numbness in my eyes which makes me feel that i want to black out - I don't but it is not a very nice feeling. This has lessened over the past year as I now able to read music without it feeling disjointed.

I have always thought that this is MS as I have it on both sides of my family but they have said that they are 99% sure that it is not. The neurologist is not now booking me into hospital at least not until he can find all of my notes.

It has taken me nearly a year to recover from the dizziness, fatigue, hemi-paresis, invountary muscle spasms and all the other bits and pieces that have been going on. I have managed to keep my job as I have a good boss and keep everything else together. If this goes off again I will not be able to do that. I am just going to end up collapsing in a corner somewhere. I don't want this to happen and for the medical profession to still not know what is wrong. I am quite willing to help myself and look at all possibilities but need some direction in which to look.

Any help at all would be so gratefully received.
 hollyann - Fri Jul 24, 2009 1:35 pm

Hi John

Looking at either APS or Lupus. Now with a lupus specialist and I guess he will figure it out one way or the other. Hoping its only APS.

Thankyou for being there.

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