myos***/polymyostitis

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Ann Ireland
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Date Joined Apr 2006
Total Posts : 511
   Posted 1/6/2008 4:59 PM (GMT -7)   
Anyone here know or have info on either of these conditions. I think this may be the problem after the biopsy I had recently.
I may have spelt em wrong.
I think I have fibro too, but docs here in Ireland thinnk fibro is a psychological problem and 'all in the mind'
My sjogren's seems to be worse at present.
Glad Christmas is over, had a lovely day today with twin.
I am not too unhappy at present. I am aiming for London to solve my problems insofar as discover exactly what is wrong with me.
I give up on our health service BIG time!
Still my crohns doc tells my GP that stress is playing a major part in my 'illness' and he implies that stress is causing my demise. He always has and says it can put people in wheelchairs, give me a break! I have never seen anyone suffering from stress in a wheelchair, maybe lying down or shattered tired but not so weak cannot walk unaided.
Little S...t!
Excuse the french.
xxAnn
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Hypothyroidism, Pes Cavus, Crohns Disease, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder (?parkinsons) movement disorder, ? another autoimmune disease.
Excema.

150mcg tyroxine, 20mg pantoprazole, 10mg Cipramil, 500mg 2 3times a day Mesalazine, 3mg Entocort, 62.5 Sinemet, 30mg Tamazipam, mystatin, sudocream


Bsime
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Date Joined Apr 2006
Total Posts : 1299
   Posted 1/6/2008 9:45 PM (GMT -7)   
I have mixed connective tissue disease which is a combination of lupus, scleroderma and polymyositis (PM).  MCTD or any of the myositis diseases are rare.
 
PM is one of several myositis diseases which are inflammatory muscle diseases.  My case was very extreme and just 2 years ago I was totally crippled, a quadriplegic, as a result.  I lost 40 lbs of muscle mass in a week.  Most cases are milder and more progressive but if diagnosed and treated aggressively many can live a fairly normal life. 
 
What are your questions about PM?  Do you think you have it?
 
Here is the website for The Myositis Assn in the USA www.myositis.org
 
There is a similar one is the UK  www.myositis.org.uk/
 
Let me know if you have any questions.
 
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 1/6/2008 9:59 PM (GMT -7)   
Bill, I am SO glad you have responded and I want to say firstly I am sorry that you are so badly effected.
I AM told I have a muscle wasting disorder but they do not know if it is fast or slow. I had a biopsy recently and it showed in the cytocrome oxidase that what was there is very very strange in a person just turned 55 and would more likely be found in a person 10+. The neuropathologist says that it would make me very exhausted etc. I was talking to a friend's daughter who is doing a doctor at Trinity College where she is a scholar and she says that this enzyme would indicate that the muscle cells are dying and that would explain the weakness and the muscle wastage and also I am shattered exhausted all the time.
it is mainly in the hands and lower arms but also noticable in the lower limbs.
I have no power in my right hand or wrist and the left is going that way now. The Pain is AWFUL, it seems a nerve pain and the muscles go AWOL if I do too much and I usually do do too much.
I get a burning sensation in my hands, feet and lips and they are on fire most of the time. I have raynaud's and now I am told I have sjogrens and also have crohns for defo, I had a resection in 02.
I am waiting to go to London on the E112 qovernment scheme where I will go to the Louise Coote Unit which is a specialist Lupus unit in the UK. I live in Ireland.
I find it very difficult to walk, I have a kinda ataxic walk but I feel too weak in the pins to walk and sometime I become bent over for the spinal column does not seem able to stay straight. My twin has Parkiinsons and although I tested pos for parki three neuros say I do not have it.
I really feel that my manifestations are of a Mixed connective tissue disease.
I also find that at times I am just too tired to continue breathing and I did a lung function test last week which showed that I had the capacity of a 35yr old even though I gave up a heavy smoking habit two years ago. The nurse said she had never seen anything like it.
I just, at time feel I need assistance in having an oxigen tank, cos it can get so laboured it is frightening.
I taken neurotin for the pain but nothing else.
Thanks for the two sites mentioned , I really appreciated it.
Look after yourself.
xAnn
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Hypothyroidism, Pes Cavus, Crohns Disease, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder (?parkinsons) movement disorder, ? another autoimmune disease.
Excema.

150mcg tyroxine, 20mg pantoprazole, 10mg Cipramil, 500mg 2 3times a day Mesalazine, 3mg Entocort, 62.5 Sinemet, 30mg Tamazipam, mystatin, sudocream


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 1/7/2008 6:58 AM (GMT -7)   
Ann,
 
Not sure what cytochrome oxidase has to do with myositis diseases.  It is a protein that is essential in respiration.  The muscle weakness that is typical of myositis are in the proximal muscles, those off your trunk.  Symptoms are difficulty getting out of chairs, going up stairs, raising your arms , and swallowing. 
 
Polymyositis primarily hits those proximal muscles and dermatomyositis can be less severe on proximal muscles and and also hit the distal muscles.  A third type of myositis, IBM, is less severe at presentation but progressive and untreatable.  The myositis site will give you more information but from the little that you have described it does not sound like you have myositis.
 
Did your doctor do blood tests?  Was your CPK or SED rate elevated?  A biopsy will usually show if you have myositis and what type but not always depending on the activity or meds at the time of the biopsy.
 
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 1/7/2008 8:26 AM (GMT -7)   
Thank you again for answering Bill. My breathing is effected, I find it very hard to breath at times yet my lung funchtion is that of a 35yr althoygh I am 55. I find it hell climbing stairs or even holding a newspaper up as it is difficult. the neuropathlogist has just rang to say there is no evidence of inflamatory disease and serious disease but he wonders where the muscle biopsy was taken. it wass taken in my dominant upper biceps which he had a problerm with and up til the biopsy I was on large dose of steriods which were stop a day before the biopsy.
I told the path that it wasw the lower limbes and lower arms effected.
He is gonna talk to a few people.
xx for now.
Ann
Going to get my new car!!!!
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Hypothyroidism, Pes Cavus, Crohns Disease, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder (?parkinsons) movement disorder, ? another autoimmune disease.
Excema.

150mcg tyroxine, 20mg pantoprazole, 10mg Cipramil, 500mg 2 3times a day Mesalazine, 3mg Entocort, 62.5 Sinemet, 30mg Tamazipam, mystatin, sudocream


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 1/7/2008 3:48 PM (GMT -7)   
Steroids can alter the result of a biopsy and stopping a day before would not be anywhere near long enough.  For those with myositis they try and take the biopsy in an area where the muscles are weakened...typically in the thighs. 
 
Diagnosis is the sum of symptoms, blood tests (particularly cpk and sed rate), possibly emg tests, mri, and a biopsy.  I had everything except the emg tests and there was no question about the diagnosis.
 
If you doctor does not have experience with myositis or other muscular diseases he/she might not be able to diagnose.  Would find a second doctor or clinic that has experience.  Some docs who treat MS or MD have that experience.  In the states it is usually a rheumatologist but not all are created equal and have the experience with rare diseases.
 
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 1/7/2008 5:18 PM (GMT -7)   
Hi again Bill, I will say what I know. I do believe they could not have found much with me on a high dose of steroids and taking the biop from a dominant muscle.
My CK has been raised now and rising for the past few years, it has been as high as 490 and the cut base seems to be 25-125 and my raised level is ignored. My ANA has been 1/800 twice and slightly lower, my ESR is usually always raised sometimes very high. My prolactin has been raised and ALL ignored cos they say well if the CK was in the 1,000's THEN we'd sit up, but why is there an asterix when the levels go beyond the base? What is the point of having a baseline of normal/abnormal if it is ignored?
I have never really had a full multidisciplinary look at my situation, I am fobbed off as 'neurotic' and that 'stress can put you in a wheelchair' etc.
I also feel awful tired ALL the time, I seem to have a low grade fever all the time, winter isnt bothering me at all and I am hardly wearing a coat locally. I fire up with exercise, my mouth dries up within half an hour of getting up and getting breakfast ready from the exercise of doing just that.
Things do stick in my gullet, yesterday it was melon, today a bit of dinner, and before it was cornflakes and it has been pills which I have coughed back up.
I find getting off chairs awful, going up stairs dire, I find it hard to hold a newspaper or my camera.
I have Raynauds phenomena and also a leg, usually lower or an arm can go numb spontaneously or if very tired. Walking with stick by the sea the other day, a short walk I noticed that one leg felt warm and normal the other cold and dead.
I wake with a dry cough and can almost choke on nothing when I get into a fit of coughing.
I also have the jiggs and jerks in my feet and one hand, but when resting the right hand does nothing at all, but when active all my extremities do weird things like contract, piano rolls or jerk,
I have chorea and dystonia and I am permentantly in pain and take neurontin.
I appreciate you corresponding bill, I really do, I now have gone through three years nearly of slowly declining and I dont think the doctors are being at all proactive here. I long to go to London fast to the unit I mentioned.
Have a good night there Bill,
xxAnn
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Hypothyroidism, Pes Cavus, Crohns Disease, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder (?parkinsons) movement disorder, ? another autoimmune disease.
Excema.

150mcg tyroxine, 20mg pantoprazole, 10mg Cipramil, 500mg 2 3times a day Mesalazine, 3mg Entocort, 62.5 Sinemet, 30mg Tamazipam, mystatin, sudocream

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