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Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 5/11/2008 2:33 PM (GMT -7)   
Hi I see by your profile that you have polymyositis. Please could you tell me how this effects you and how it wasw diagnosed.
With extensive EMG testing on a machine that looked out of Dr. Who the results were that I had chronic myopathy, is this the same?
I also have a Cox fibre in a small muscle biopsy taken late last year, so it could be mitrochondrial dna malfunction.
Any info on testing and effects of Polymyositis would be so gratefully received.
Ann
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Pes Cavus, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder, movement disorder, recently dxed as drug induced 2008 Crohns Disease 1996,Hypothyroidism 1998, Raynauds 2006, Sjogrens 2008, Lupus 2008, spine in very, very bad way dx 2008
Irish, not an illness!

100mcg tyroxine, 10mg Cipramil, 3mg Entocort, 30mg Tamazipam, mystatin, sudocream, neurontin 600mg, acidopolis, Vitamin B complex, Coenzyme Q10, Vitamin B12 injection, Nexium 40mg, Fortijuice.


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 5/12/2008 8:11 PM (GMT -7)   
Ann,
 
Polymyositis is usually accompanied with significant muscle weakness.  Symptoms are difficulty getting out of chairs/off the toilet, raising your hands over your head, general fatigue, and/or swallowing difficulties.  Doctors usually measure your sed rate as a sign of general inflammation and your cpk numbers which indicate muscle breakdown.  PM usually hits the proximal muscles the hardest.  Those are the muscles around your hip and shoulder girdles.
 
As with lupus diagnosis is often difficult and elusive.  Further diagnostic tests include emg, mri, and usually a muscle biopsy.  chronic myopathy is not a disease but a generic term and myositis diseases are some of the inflammatory muscle diseases under that category.
 
PM can vary from mild to extreme and onset can be fairly sudden to drawn out.  There is no real consistent pattern.  My case was very extreme and I lost 40 lbs of muscle mass in a week and was left a quadriplegic who could not swallow.  My docs found a treatment (ivig) that worked (I was resistant to prednisone) but i have gone through 2.5 years of physical, occupational and speech therapies as well as working out on my own for the past 2 years.  While not 100% I have returned to an active life but still have significant muscle weakness and fatigue.
 
Most cases are not like mine (not as extreme or as sudden) and there are many other causes of muscle problems.  Lupus itself can cause similar symptoms and weakness.
 
PM attacks the muscle cells directly and dermatomyositis attacks the capilaries feeding muscle cells.  DM tends to have skin rashes.  Both can exhibit similar symptoms otherwise.
 
There is a third type of myositis called inclusion body myositis.  There is debate whether this is really related to pm/dm or if it is an entirely different disease.  It is very slow to develop and is not treatable at this time.
 
Here are links to more information on myositis diseases.
 
 
 
 
Hope this helps.  You have a whole list of problems that could be part of a connective tissue disease like I have...mixed connective tissue disease.  MCTD is a specific diagnosis but undifferentiated connective tissue disease (UCTD) is diagnosed when symptoms and tests are not conclusive to diagnose anything more specific.  Frustrating but quite common.
 
Bill
 
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 5/13/2008 1:54 PM (GMT -7)   
Bill, a brill concise post to help me on this 'chronic myopathy'.
You are great!
I am going to start physio and will start slow. I dont live in America and I have been waiting for physio since Oct. 05.
I can't really afford private physio.
When I did go once or twice I got ideas and of course I was always a sports person before I became ill, so I know what to do, in the main.

I understand what you are saying and the doc in London felt a second bigger biopsy would be prudent to see if anything can be discovered from that.

I worry though, I worry about a shortened life now. I am 55 and sort of 'balls up' my first 48yrs, not intentionally, I was just a very troubled person.
I got the head together after crohns surgery then when I felt I had b etter get a life. I sold a family heirloom and went for therapy and within say, a year was happy for the very, verty first time, even my painting was taking on new heights.
My physical health began to fail very slowly, finding it strange my canvas handbag was too heavy! That sort of thing.
I use a wheelchair now and can only walk very short distances and tend to bend at the knees, the more tired I get the further nearer the ground I get!!!
thanks Bill.
Oh, before I go. The doctor in London was not able to explain my burning palms of hands and feet, nor my massive lack of temp control, I always feel too hot. In bed my feet are very sensitive and will not allow one foot to touch the other, its like as if one gives the other an electric shock.
my skin is very sensitive and even though the nerves on the EMG appear fine, the burning feels 'nervy' if you know what i mean,
xann
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Pes Cavus, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder, movement disorder, recently dxed as drug induced 2008 Crohns Disease 1996,Hypothyroidism 1998, Raynauds 2006, Sjogrens 2008, Lupus 2008, spine in very, very bad way dx 2008
Irish, not an illness!

100mcg tyroxine, 10mg Cipramil, 3mg Entocort, 30mg Tamazipam, mystatin, sudocream, neurontin 600mg, acidopolis, Vitamin B complex, Coenzyme Q10, Vitamin B12 injection, Nexium 40mg, Fortijuice.


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 5/13/2008 2:50 PM (GMT -7)   
Ann,
 
Can't explain your temperature problems but it seems that when our immune systems go whacko our thermostats do as well.  I was too hot for a long time and now it tends to run the other way with Raynauds.  As time has passed my body has become more normal but still not what it was 3 years ago.  I did have hot hands and feet due to inflammed muscles and joints for the first 5 months but it went away after I was successfully treated.
 
You can do your own therapy.  Just go slow but do as much as you can.  Walk daily (with a walker or cane for safety).  If you are really unstable buy a therapy (gait) belt and have someone accompany you when you walk.  Last thing you want is to have an accident. Focus on the big muscles used for walking and stairs.  Also do some light weights for your arms and shoulders.  Anything will do...a weighted ball, light dumbbells, therapy bands.  Lots of ways to do resistance work and improve your strength. 
 
Just listen to your body...it will tell you when you do too much. 
 
Bill
 
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 5/13/2008 3:43 PM (GMT -7)   
Hi again Bill,
Yeh, I do walk daily with a cane or a walker, but what can happen is I can do too much and get 'overloaded' in a sensorial way. Eg, when I feel a bit better more things, like walk, talk (!) laugh, visit shops, drive more etc. but what happens then is I can't sleep cos my whole body is ov erreacting - jigging and jerking etc.
I know that the less I do from the 'varied kind' the less the sleeplessness.
I have been doing stretching exercises since I got out of the hospital and my right arm and left leg is not going numb so frequently now.
I do the stairs even if I have to heave up holding the bannister or put my hands on the step ahead or lean elbow against wall. I live in an upstairs flat and have a chair lift, which usually carries potatoes etc, but not me if I can help it!
I tend to do the slopes and stairs etc to get the muscles stronger, I never resorted to the chairlift but I am getting weaker so I must do the exercise program.
I have worked out a neat little program but it all filtered out when my lethargy and fatigue just simply got the better of me. I was also having no outside help on anything like cooking cleaning etc. Family never came on board. I have been given three hours home help now.
That is three hours a week!
Can't sleep now bill hence the response, it 12.40am
xAnn
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Pes Cavus, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder, movement disorder, recently dxed as drug induced 2008 Crohns Disease 1996,Hypothyroidism 1998, Raynauds 2006, Sjogrens 2008, Lupus 2008, spine in very, very bad way dx 2008
Irish, not an illness!

100mcg tyroxine, 10mg Cipramil, 3mg Entocort, 30mg Tamazipam, mystatin, sudocream, neurontin 600mg, acidopolis, Vitamin B complex, Coenzyme Q10, Vitamin B12 injection, Nexium 40mg, Fortijuice.

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