Simply Musing (MS/FM, related?)

Discussion in 'Fibromyalgia Main Forum' started by skyeone, Apr 2, 2006.

  1. skyeone

    skyeone New Member

    I'm not looking for advice, nor am I suggesting this as fact. I'm just musing.

    When I first started to have problems, I was told I had CFS it was then upgraded to FM. Now that my symptoms are getting worse and never really going away, but are going around my body in stages, (ie. leg cramps, then loss of feeling in right side of body, that goes away and then something else and then back to the leg cramps) the docs are now thinking I have MS.

    I was positively diagnosed with CFS, then positively with FM, now it looks like I'll be positively diagnosed with MS. So, if that is indeed the case, it seems to me that CFS and FM could be the start of MS. The docs and everything I read tell me that all my CFS and FM symptoms are mild symptoms (or the start of) MS. All the symptoms overlap. It also says that it takes many years before a positive identification can occur.

    If this is the case, aren't we all in danger of getting MS? I certainly hope not!!!
    [This Message was Edited on 04/05/2006]
  2. LittleBluestem

    LittleBluestem New Member

    While mild symptoms of MS may be similar to CFS and FM, I do not think that everyone with CFS and FM will develop MS. Some people have had these diseases for quite a while without developing MS. How long has it been since you were first diagnosed with CFS? How long since you first began experiencing symptoms?
    [This Message was Edited on 04/03/2006]
  3. Shannonsparkles

    Shannonsparkles New Member

    I spent a lot of lastnight researching MS. I started doing so because of a semi-paralyzed feeling in my legs, along with tingling and feeling detatched from them. I am less and less able to walk as time goes by.

    When I read the websites on MS, I thought, Why did no one tell me about this??!!

    I am concerned for myself that I may be getting this too. And, of course, like the regular DD, there's no truly conclusive test for it.

    If I get MS, I hope I can handle it. I ordered some books from the library that night, so that I can read them and see if I see "me" in there. That's the way I got to knowing I had CFS, a year before my official diagnosis.

    Hugs, skyeone. It's hard to not know, isn't it?

    I've already gotten my dad to agree to moving us into a rancher style house next (no stairs). And I'm going to try to get my CFS specialist to help me get a motorised recliner wheelchair with a headrest so that I can get around. I see my symptoms worsening.

    I'm not going to hide my head in the sand and say "there's no place like home" and think I can get all better. Whether I get better or not, whether I have MS or not, the wheelchair and the flat home are things I need NOW. I don't need a diagnosis of MS to start taking care of this.

    Wish we lived closer to eachother. If MS becomes a part of my experience, I'll share it with all of our members here. If your doctors and articles are correct, that the CFS cases that progressively worsen really are MS, then this is something that we all need to know.

    I'm here for you, as well as I can be. One day I might not be able to type anymore... but I won't think about that for now. In any case, most MS is a relapsing disease, so there should still be a few better days to put under my belt. I want to catch a yard sale once this year, no matter how sick it makes me.

    Please continue to provide us with more info on this subject. We PWC and FM-ers need to know about MS.
    (((skyeone)))
  4. sues1

    sues1 New Member

    See a new posting I jJUST made since I read this thread.

    CF FM MS STUDY (long)

    I do think a virus or a bacteria invaded our bodies at a opportune time and maybe combined with another virus or bacteria at the same time?

    I do not think that FM or CF leads to MS. But maybe a person was mis-diagnosed with FM/CF, as MS has similar symtoms.

    Yes we can get all three, but I do not think FM or CF progresses to MS.

    Nor do I think we all have the same thing wrong with us. Anyone that has been "cured" had something else.....that is my feelings....not medical info.... Just the way I feel about it. But we could have other things that makes us like we are. Or have additional things that makes us sicker....like thyroid, yadda yadda.

    Anyhow there was study being done in 1998 on a bacteria. I wonder if anything came from it? I posted it just now.
    Thanks for your musing, it makes us all think...that can be good ...
    Blessings.........Susan
  5. skyeone

    skyeone New Member

    Thank you all for your comments. LittleBluestem, i thought i'd answer your question about how long i've had this. For me it started when i was 6 diagnosed with CFS when i was 16 and diagnosed with FM at 30.

    I appreciate all your comments, and i just wanted to reiterate that i don't believe that MS comes from CFS or FM i just thought "What IF". The doc's don't have an answer for any of these diseases and you are all right, there is no conclusive tests, just symptoms that all overlap each other. I certainly hope the way my brain has been thinking is nothing more than rambling in far off waves that really have no conection from one to the other. Perhaps i've just been doing too much reserch on everything. (here's hoping)

    hugs to all
    Skye
  6. Shannonsparkles

    Shannonsparkles New Member

    Sues1, from what I read the other night, one theory about the cause of MS is that it's an autoimmune thing triggered by a virus.

    Skyeone, I wonder if I could ask you to edit your title, so that it reflects that the thread is about MS and CFS/FM possibly being related? It's a great topic and something we need to think about. There may be a lot of interested people who are missing it. (( ))

    Wamps, how is your friend now? Sorry she had to go through the agony of that testing fiasco for months. Did she ever get a diffinative diagnosis?
    ((love)) Shannon
  7. rachelfox

    rachelfox New Member

    Hey Skyeone,

    I recently saw a news update about MS and Mono. They said
    that people that have mono are twice as likely to develop MS. This woke me up! I have had mono twice, once as a child and once as an adult. I have FM and CFS and sometimes I wonder if I have MS. I was tested a few years ago, but was told I did not have MS. They did an MRI on me. I was told the only way to diagnose MS is with a MRI or spinal tap where they draw spinal fluid. I would make sure you get these tests done to make sure you have MS. I am thinking about having my doctor orders tests for me again because I feel like I have been having more problems lately. Good luck to you and do not give up. We have to fight and stick together to get thru all of this. Alot of people do not believe we have a problem and/or do not believe in FM or CFS one bit. Just keep your head up and know that you have support from all of us here on the web site.
    rachelfox
  8. skyeone

    skyeone New Member

    Thanks Rachelfox,

    This is a bit of a wake up call to me as well, I have also had mono. Not a fun thought! I've had one MRI and that wasn't conclusive, I go back to my Neurologist on the 19th and then he'll be ordering further testing. So far all my tests have showed that it is possible for me to have MS, but not definitive. So I keep getting tested till something becomes conclusive. Thanks for the update and if you have the info on that article so I can read it, I'd really appreciate it.

    Thanks again,
    Hugs,
    Skye
  9. rachelfox

    rachelfox New Member

    I'll try to locate the information for you. Let me know how your test turn out and what is going on. I'll be thinking about you and praying for you!
    Hang in there!
    Rachel Fox
  10. ilovepink4

    ilovepink4 Member

    ok,when i had my first huge flare, my face went numb, my hands and arms, my leg drags when i overdo it, now...i still have numbness...i think i don;t notice it as much because i am used to it....i noticed it when it firstg came on....the docs thought i had ms too...my mri looked clear of lesions....but,it is weird that so many of us have numbness and trouble walking and dropping stuff...
  11. darude

    darude New Member

    Get an MRI with contrast that can show the lesions to start with. I've been tested for MS and show 40 brain lesions in typical MS regions. Radiologist said suspicious for MS and I have all symptoms BUT Neuro said NO just normal course of aging. MS lesions have something called Dawsons Fingers which mine don't have. They are now saying my symptoms are due to a Pituitary Tumour which they found on MRI also. I'm having a third MRI shortly with a study of the Sella Turica. PLEASE GUYS DON't PANIC!!!!!! REmember there will be a cure for MS long before a cure for these DD's so keep this in mind if you do have it. AT least there are meds to halt the demylation process if started early. Kepp us updated.
  12. skyeone

    skyeone New Member

    Thanks everybody, I'll take everything mentioned to heart. The support is very much appreciated.

    Thanks again,
    Skye