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ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 6/25/2010 8:33 PM (GMT -7)   
Hi, my name is Denise & I usually go to the Fibro or CFS forums but now the symptoms that I have been complaining about for 5 years are being heard.   I am now in the diagnostic process of:  do I have MCTD? or is it MS?    It can be so frustrating to be sick & have Dr's say "It's your Fibro" or "it's your CFS".   "You need to exercise more!" How can muscle loss & degeneration & neuropathy be either of those.  My new GP told me today that he is pretty sure it is MS because my blood tests (extensive) have come back normal for years.  But, he is cautious because normal blood tests are not conclusive.  While he still says I have Fibro & CFS, I still have something else going on. 
 
My questions:
Do any of you have sore patches forming under your skin & then it's like the muscle just slowly is attacked & is gone?  or is it connedtive tissue that is being attacked?  I have them all over my legs & now on my arms. 
 
Do you have neuropathy in your buttocks down your legs?  I am worried I will end up in a wheel chair.  I have neuropathy in both feet as well & now it's in my arms. 
 
Do you feel like you have just been run over by a bus & people are still expecting you to sit up & keep going?  If you sit down you are giving up & giving in!!  If you say I think I have MS, they know of someone who has it & they are getting well with 10,000 i.u.'s of Vit D.  & on & on. 
 
I'm tired!!!
 
I am seeing a neurologist but only as I can pay for it & the tests are too expensive for me.  Until November 26, 2009, I lived in the land of "I have all the time in the world".  I had insurance though my husbands' work & even though I couldn't work, we were fine.  Then, on that day, my husband died, unexpectedly of heart disease.  It runs in his family but no one knew.  My symptoms have been flaring ever since.  Now I am trying for my SSD & SSDI.  My doctor told me today to see a Rhuemy & my Neurologist so that is my next thing to do after I get my application into SS, but it may take awhile.  I guess I am trying to figure out how long I can go with untreated MS.  Not where I thought I would be one year ago.  Well, I need to go.  Thank you in advance for any answers you can give me.  Hugs, Denise

 I have:  Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression, TMJ, anxiety 

Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren. 

 As apples of gold in silver carvings is a word spoken at the right time for it.    Prov. 25:11


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 6/26/2010 8:49 AM (GMT -7)   
Hi Jewelrylady,
 
I am sorry you are here questioning MS.  MS is not a connective tissue or muscle disease.  It is a disease of the central nervous system.  It is thought to be an autoimmune system disease but no one knows for sure.  It is a very poorly understood disease.  It is also very hard to get a diagnosis.  You will certainly need a lot of tests before you get a diagnosis.
 
The usual tests are: and MRI of at least the brain but a spinal MRI is helpful as well, lumbar puncture, evoked potentials (extremeties, hearing, vision), a complete neurological exam in which reflexes and nerve responses are evaluated, blood work to rule out all else, if vision is effected then a thorough eye exam by an opthalmologist (NOT an optometrist).
 
It can take years to get a diagnosis.  Treatment for MS is extremely expensive.  Copaxone (the most widely used treatment--a daily injection) runs $2,800 per month.
 
There is no cure.  MS is progressive.  The current meds only slow down the disease; there is no stopping it.  For some, it moves slowly and disability is minimal.  For others, the damage is fast and extensive leading to wide spread disability.
 
Symptoms can be (it all depends upon where and how much of the brain is damaged) numbness, tingling, nerve pain, vision impairment or blindness, spasticity, fatigue, heat sensitivity, bowel and bladder issues, balance problems, and/or paralysis.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 6/26/2010 8:51 AM (GMT -7)   
One more thing, MS is complicated and you should be seeing an MS specialist if you suspect that is what you have. 
 
The MRIs are looking for "lesions" or "plaques" that show the damage caused by demyelination of the white matter. 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 6/26/2010 10:09 AM (GMT -7)   
Gretchen, Thank you for your reply.  I very much appreciate it.  I have been doing quite abit of reading on MS in the last few months & feel, as you do, that the muscle or connective tissue involvement is not MS.  My GP & Neurologist keep saying anything is possible with MS. 
 
You said:
Symptoms can be (it all depends upon where and how much of the brain is damaged) numbness, tingling, nerve pain, vision impairment or blindness, spasticity, fatigue, heat sensitivity, bowel and bladder issues, balance problems. 
 
 I do have all of these symptoms.  Some I attributed to Fibro or CFS, but others I have been asking about for years but they come & go.  I will have the symptoms for a few days or months & then they will be gone, so strange.  I had a barrium swollow done last month & found that my esophagus muscles are weakening, could be from neve damage?  who knows but swollowing is becoming difficult.   
 
When everything began, my original symptoms were loss of core muscles &/or numbness in my pelvis, dizziness, vertigo, loss of balance, double vision, fatigue & sleep issues.  Most of these lasted at least 6 months before going away.  They, of course, returned again & again.  Most or all of the symptoms you gave were attributed to Fibro by every doctor I saw.  Needless to say I have I have seen a lot of doctors.  Most thought I was just lazy & needed to exercise.  I saw my GP yesterday, he said I have neurologically gone down quite abit since last month.  I must see a Rheumy as soon I can get in.
 
I think Fibro & CFS & possibly a muscle problem has muddied the waters abit.  It's like unraveling a ball of yarn to find what goes where.  LOL 
 
Thank you again for your reply.  Healingwell is such a good place to come for answers & for support.  Hugs, Denise

 I have:  Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression, TMJ, anxiety 

Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren. 

 As apples of gold in silver carvings is a word spoken at the right time for it.    Prov. 25:11


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 6/26/2010 6:21 PM (GMT -7)   
A neurologist told you that muscle and connective tissue involvment could be MS?  I have never heard that said before.  In MS, you can have muscle atrophy from lack of use.....due to no nerve signals getting through.  But MS is not a muscle or connective tissue disease. 
 
Also, one of the things that makes getting a diagnosis really hard is the fact that all of the symptoms of MS are shared by so many other diseases and disorders. 
 
Has either of your doctors ordered an MRI?  That is where most doctors start. 
 
Oh and rarely to symptoms come and go with MS.  Usually they just come and stay.  My symptoms are nystagmus, balance and chronic vertigo, my lower legs are numb (mid shin down), spasticity in my left leg.  These symptoms are permanent....until my next exacerbation, then I will have more. 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.

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