Looking for People with MS *and* Fibromyalgia

Discussion in 'Fibromyalgia Main Forum' started by dhcpolwnk, Sep 10, 2002.

  1. dhcpolwnk

    dhcpolwnk New Member

    Hello. I'm new to this group and new to fibromyalgia--at least on a personal level. I know some people who have it, though in some cases, they never told me until I mentioned my recent diagnosis (about two weeks ago) to them.

    I also have multiple sclerosis. I've had MS for *many* years, and though I haven't taken any of the bio-engineered MS drugs until now, my last couple of MRIs convinced me that I need to be on one of them, and I'm trying to work that out financially. (My health plan doesn't cover either prescription drugs or durable medical equipment. So I get to pay for both my meds and repairs to my scooter myself.)

    My concern is how MS and fibromyalgia and/or treatments for either condition may interact with the other condition. My neurologist's office has told me they don't deal with fibromyalgia, and my primary care doctor, while very nice and accommodating, doesn't really seem to know more than the very basics about either condition.

    I'm a public policy analyst and a disability rights activist and have long known that you have to be your own advocate to get what you need in the health-care system. However, at the moment, I'm feeling a bit overwhelmed. I certainly would appreciate hearing from anybody else on this list who is dealing with both MS and fibromyalgia and having the opportunity to learn from your experience.

    Thank you.

    --Laura R.M.
  2. dhcpolwnk

    dhcpolwnk New Member

    Hello. I'm new to this group and new to fibromyalgia--at least on a personal level. I know some people who have it, though in some cases, they never told me until I mentioned my recent diagnosis (about two weeks ago) to them.

    I also have multiple sclerosis. I've had MS for *many* years, and though I haven't taken any of the bio-engineered MS drugs until now, my last couple of MRIs convinced me that I need to be on one of them, and I'm trying to work that out financially. (My health plan doesn't cover either prescription drugs or durable medical equipment. So I get to pay for both my meds and repairs to my scooter myself.)

    My concern is how MS and fibromyalgia and/or treatments for either condition may interact with the other condition. My neurologist's office has told me they don't deal with fibromyalgia, and my primary care doctor, while very nice and accommodating, doesn't really seem to know more than the very basics about either condition.

    I'm a public policy analyst and a disability rights activist and have long known that you have to be your own advocate to get what you need in the health-care system. However, at the moment, I'm feeling a bit overwhelmed. I certainly would appreciate hearing from anybody else on this list who is dealing with both MS and fibromyalgia and having the opportunity to learn from your experience.

    Thank you.

    --Laura R.M.
  3. Shirl

    Shirl New Member

    Hi Laura, welcome to the board. I have Fibro, but we do have members here that have both Fibro and MS.

    I just stopped to welcome you, and will let those who can relate to your illnesses answer you.

    Glad you have found us, and wishing you the best with all that you are dealing with.

    Again, a big welcome.

    Shalom, Shirl
  4. dhcpolwnk

    dhcpolwnk New Member

    To Jellybelly:

    I noticed your post on the topic of mycoplasmal infection, and it really stopped me. About 15 years ago (I think), I had mycoplasmal pneumonia. Actually, the pneumonia went through our whole family, but I'm not sure whether all of us had the mycoplasmal variety. Are you saying that this infection might be involved with the development of fibromyalgia or of symptoms that might look like fibromyalgia? Forgive me if that sounds like a stupid question, but I learned in the ninth grade that a person who asks a question may be a fool for five minutes, but the person who asks no questions is a fool forever!

    --Laura

  5. dhcpolwnk

    dhcpolwnk New Member

    Thanks for the welcome, Shirl, and Shanah Tovah.

    --Laura

  6. Combatmedic

    Combatmedic New Member

    AND my name, is also Laura! How's that? lol
    Seriously, I'm glad to see your post. I don't know if I have MS or not, I will have my second MRI in November. The first only showed one 7mm lesion, in the Corpus Callosum. On my last visit with the neuro, he diagnosed me with Trigeminal Neuralgia, and said he wanted to do another MRI.

    Could I ask you a few questions?
    Does the SIZE of a lesion matter----what's a "big" lesion, versus a smaller one?
    How many lesions are indicative of MS?
    It is my understanding that the area of my brain, in which the lesion is, is a common region for MS lesions.
    But, having only one lesion right now, I try not to worry too much.
    How long did it take/how old were you when you were diagnosed? (I am 24)

    Sorry for bombarding you with all these questions, I've just been searching for someone else with fibro or MS to talk to about MRI's and what they mean.
    I hope you enjoy this site and the support it will give you, and I agree with you 100% about what you said on the post about canes, walkers, and other aids. I wish that I was HALF as strong as you when it comes to educating people on the RIGHTS of disabled people, and people in chronic pain. I feel that a wheelchair would actually give my husband and I MORE freedom to leave the house because we wouldn't have to worry about me wearing out in five minutes, or getting sick, or weak. But, *sigh*, at the mere mention of getting a shower chair (to rinse my hair because I get dizzy) my husband broke down in tears, so, we both just suffer our different emotions and fears about my disability in silence.

    It's nice to meet another Laura! lol
    Medic
  7. dhcpolwnk

    dhcpolwnk New Member

    To combatmedic/Laura:

    I'm happy to answer any questions you may have about MS. If I can, that is. I'm not sure about the significance of the size of lesions. My guess is that a larger lesion indicates that a larger patch of myelin is affected. The analogy that's often used is that myelin is like the insulation on an electrical wire. I guess if more insulation is missing, it would cause greater interruption in the transmission of electrical signals, because the signals would have to cross larger uninsulated patches. I suspect the same may be true of larger lesions in the myeline coating.

    However, I also understand that clinical signs (i.e., symptoms experienced by the patient) don't always follow the patches that show up on the MRI. Sometimes there can be symptoms without visible white spots on the MRI, and sometimes there can be lesions that show up in the MRI that show no immediate clinical signs. Current thinking, though, is that damage may be occurring even with the silent lesions, but the clinical signs don't show up until later.

    When I had my first MRI in 1985--seven years *after* I was diagnosed--only a few small MS lesions showed up. I had another MRI in 1992 or 1993, which confirmed the MS diagnosis, but I never saw that one; so I don't know how many lesions showed. My MRI in 2001, however, showed "extensive white matter disease" (according to the written report sent to my neuro). So there obviously has been progression. However, I still can walk limited distances, and with the help of my cane and my scooter, I can be pretty active in a lot of ways. I definitely appreciate the support and help of my wonderful husband of 35 years. (Now I'm really dating myself!) I had my first MS symptoms when I was 21, but nobody realized what it was at the time. (I believe now that it was a bout of optic neuritis, which I had in a much more intense form years later.)

    My MS was diagnosed in 1978, when I was 32. Diagnosing MS typically took many years before the widespread use of the MRI--and there were many misdiagnoses, not to mention missed diagnoses. The diagnostic process usually takes much less time now, but since some lesions may not show up on an MRI--especially if an MRI is done just on the brain and not on the spine as well--sometimes the process still can take a long time.

    As I understand it, a thorough medical history still is important in diagnosing MS, even with an MRI. The diagnosis isn't based only on the lesions that show up on the MRI. A key question is whether the patient has experienced several different exacerbations (also called attacks or relapses) affecting different parts of the body, each lasting for a minimum of 24 hours.

    I'm glad to see you have a healthy, practical attitude toward mobility aids. You're absolutely right about a wheelchair or scooter *enhancing* freedom rather than restricting it! Regarding the shower chair, consider getting a plastic patio chair to use in the shower when you wash your hair. (Just make sure it's a stable one that won't slide or tip over if the shower floor is soapy from shampoo.) That was recommended to me as part of a home health assessment after I requested a piece of durable medical equipment from my health plan (back when we had DME coverage). This has worked out pretty well. I use a plastic patio chair that is lightweight and has arms on it. I also have had grab bars installed in my shower. This has been *very* helpful.

    As a former MS peer counselor, I have to open my big mouth (or is it my big Internet link in this case?) and suggest that you and your husband try to talk about this stuff together. It's okay to cry about it. My husband and I had some pretty good arguments early on. Then we had a few heart-to-heart talks and decided that when the going got tough, we would remember to get mad at the MS--and not at each other! And as I said, we've been married for 35 years. (Although my MS wasn't diagnosed until 1978, my first symptom showed up four months before we got married. So I've actually had MS throughout our entire marriage, even though neither of us knew it at first.)

    I hope some of this has been helpful. I invite you to visit my personal web site at http://www.geocities.com/dhcpolwnk . You might find some of the information there of interest. Check the Links page at my site for some web sites specifically about MS. (I used to work on public policy for the California chapters of the National Multiple Sclerosis Society. Most of my web site deals with health care and disability public policy. The site also includes some of my original music--my hobby.)

    Hang in there, and feel free to ask me more questions.

    --dhcpolwnk/Laura
  8. MicheleF

    MicheleF New Member

    Sounds like you've got a plateful, but what a wonderful attitude you have! As you've gotten some great replies, I'll just say that I'll look forward to seeing more of your uplifting posts.

    Take care. Michele