Dx: MS, FM, CFIDS or What?

Discussion in 'Fibromyalgia Main Forum' started by MelG, Jan 8, 2003.

  1. MelG

    MelG New Member

    I know this is long. I apologize. I have had, for a very long time, the problem of conveying my thoughts verbally, I’ve always been told I do a better job in writing. I need your thoughts friends.

    Yesterday I got the word from the neurologist...dx: Relapsing/Remitting (RRMS) Multiple Sclerosis, (dx may change to some sort of progressive later). Well…I'm going to be starting Copaxone. :-|

    These weird (attacks or flares or exacerbations whatever you want to call them) like complete numbness (feeling like it’s a totally dead limb) of various limbs with inability to speak (at all) go back as far as the early 80's. Episodes involving things as double vision, vertigo, urinary tract infections, bowel problems, burning, pins & needles, prickles in feet, tingling, heat intolerance, tingling in fingers during hot, humid weather, tremor, sometimes jerking, twitching, almost like tics, etc. etc. I'm trying hard to keep myself composed.

    Question...can you have M.S. and still have Fibromyalgia? Do I have something else? I mean does that mean I do or don't have fibro? I'm really confused and a little scared.

    I have brain lesions that started to show up in the mid 90's. But my spinal tap was NORMAL. They'll probably keep doing MRI's to check the lesions, I would assume.

    This doc. is pretty thorough. He has had me get two other opinions to make sure he's not missing anything. He even asked me to see a third. I think his big concern is that he's missing something, and the progressive deterioration of my mom's illness. Why is it not a clear cut case of M.S.? Why is M.S. so difficult to diagnosis?

    The doctors have told me that unless they did an autopsy, there is no way to 100% confirm she had Alzheimer's. Lovely, so does anyone know for sure what I'm really facing here?

    How concerned should I be here? I see a lot of similarities between me and my mom but I can't tell you if it's from my illness or medications or a combination. I know losing control of the bowel is not good. In fact my mom had those problems way before the word Alzheimer's entered the picture.

    I remember when I was growing up hearing a lot of the things happening to her that is happening to me as far as pain and fatigue. I know she was in A LOT OF PAIN but kind of suffered in silence. She hid have arthritis but I don’t know what kind. She always put everyone before herself.

    My mom's actual cause of death is listed on the death cert. as congestive heart failure (medications were stopped, except medications to keep her as comfortable as possible). She had diabetes very bad an had gotten sepsis from a wound on her foot. She was totally out of it by the time she died. They wanted to amputate her leg but enough was enough you know.
    She died at home on hospice so I witnessed the whole thing. She was in the final stages of "Alzheimer" or whatever it really was at age 77. Cognitive abilities were next to zero, unable to walk, lose of bowel/bladder, etc.

    She was diagnosed around the age of 70, but there were signs of it long before that. I would say as early as mid to late 50's, early 60's.

    The neuro. is going to try to get her records and MRI reports.

    What I do know is that there was a disease process that ended in dementia and body system dysfunction in my mother that began with many of the similar symptoms that I am experiencing.

    Hey I'm scared guys. But I guess it's good to find things out early huh?

    A big part of the problem is that I’m afraid I forget to convey ALL the specific symptoms to my as they are happening. I am starting a daily log to record each event. (I have been making notes in my calendar prior to this).

    I have noticed that a do something they call “scanning” in my speech. Last week when I went to the ER with the side of my face number, I was slurring my speech. My case manager from the health insurance company (an RN) noticed it.

    If you all where in my shoes what would be your next step? My brother-in-law’s best friend has progressive M.S. Maybe he can shred some light here.

  2. jaster45

    jaster45 New Member

    Sounds terribly scary.I cannot give any help in regards to the MS symptoms but I imagine there are people here that can be of some assistance to you.All I can say is you are in my prayers and I hope you get some resolution ASAP.

    Hang in there MELG,and I sincerely wish you the best.

  3. klutzo

    klutzo New Member

    I'm sorry it turned out to be MS. There are support groups available on the Web and in many local areas for MS. Seek them out and maybe you can get some answers. I was misdx'd with MS for 4 yrs. but that was a LONG time ago, before MRI was invented. I understand the MRI dx is pretty definite. Once upon a time, MS was treated the same way FMS is now. There are many new and interesting treatments for MS, the most strange of which is apiary treatment (bee stings). The remitting type of MS is much better to have than the progressing type....we have a family friend who has the progressing type and she told me that.
    May God Bless you and give you strength,
  4. marcus1243

    marcus1243 New Member

    And so sorry that you're going to have to fight the MonSter. It's by no means a predetermined ending though!

    Firstly, I'm not sure why you've only just been dx'd if you've had MRI lesions as far back as the 90's -- seems the history plus positive MRI makes for a classic case of MS (albeit without the Ogc banding found in the CSF of most MS patients.) Is he saying it *is* MS or it *might* be MS? Some clarification of the situation would be helpful here.

    Secondly, even if your mom did have Alzheimer's, that's not to say you'll get it. I know somebody whose father has Alzheimer's and he has MS. He has been stable/in remission for 9 years and shows no signs of deterioration on MRI.

    Also, if you get on any of the ABC meds, they are really very effective at slowing the progession of MS. You may never get any worse, or it might go into remission at any time. And you must remember that science is very close to beating this MonSter -- millions of dollars worth of research is being poured into the search for a cure. It may well be discovered within the next ten years -- your mission (if you choose to accept it ;) is to stay upbeat, focused and determined. As I say, my friend has had MS for 9 years (he's on Avonex) and he's in better shape than I am! It is possible to live with MS and it's by no means a death sentence. There are some great MS boards out there, and they can offer a great deal of help.

    As to your question on Fibro and MS, yes, it's extremely common to have both, and easy to confuse the symptoms of one with the other. The CNS sensitisation that is the hallmark of FM may well stem from repeated insult to the nerves by demyelination. Neither condition seems to make the other worse, or means that you will progress more rapidly.

    Please remember our thoughts are with you in your fight.
    Hugs and best wishes,
    PS -- I too am being investigated for MS.

    [This Message was Edited on 01/08/2003]
    [This Message was Edited on 01/08/2003]
  5. teach6

    teach6 New Member

    They have volunteers who call newly dx'd patients on a regular basis to check in and see if they have any questions.

    One of my best friends has had progressive MS for over 20 years and one thing she can still do is phone calls. Last year she got an award from the local MS Society as their volunteer of the year. She usually calls about 10 people regularly, while most people call only one or two. They also give her the difficult ones.

    She has a terrific outlook on life. She was a huge help to me when I was bedridden last year. She helped me focus on what I can do instead of what I can no longer do. That has made a huge difference in my handling of my illnesses.

    So give your local group a call and find out if they have callers so you can talk to someone else with MS about your concerns. As you have learned here talking to someone who has been there can make all the diference.

  6. KayLyn

    KayLyn New Member

    Hi MelG,

    I am so sorry to hear about your DX...I also have MS and Fibro I am in my forth year with the DX...I was diagnose with Fibro first because doctors just kept telling me that I was crazy and that nothing was wrong...(I think they told me Fibro in the begining just to keep me quiet)...but later I was diagnosed with MS...it was clear on the MRI that I had had it for years...they believe it was at one time RR but now it is secondary progressive...it changed over time...anway...my Neurologist confirmed that I do have fibro after they found the MS...she said that she had seen the two run together before so yes you can have them both at the same time...I use Avonex...and do not know much about Copaxon...but I understand it is good...believe me...I feel for you...if you have any questions about anything I can help you with please e-mail me...I have a lot of information and being new to the DX can be scary...so please know that I will help all I can...

    to answer your other question...there has not been a link proven between MS and alzhieimers...or that I can find...I am not a medical professional...I am just getting my information from MS resources that I have...also I want to stress to you that MS is very personal...I mean...what I experience you might not...or someone else might not...it is so unpredictiable so be careful to remember that as you are learning new things about your illness...it is scary...overwhelming...and easy to get bogged down in all of the information overload...but please...take it one step at a time...the daily log of events is a great idea...it will help you keep tabs on what your weaknesses are...you will learn them over time...so...please e-mail me if you would like...Kamiller4@excite.com...and Hugs to you...K
  7. dlizard

    dlizard New Member

    have you ever tried to look up huntingon's cholera.... you should read about it.... I don't know why but that word popped into my head for you... I think you can definietly have fibro WITH any other condition(s).... I also think the MS symptoms are somewhwat what we are going to progress to.... remember this: THEY DON"T KNOW!!! that's the bottom line.... trust your own honey and keep on keepin on! Firbo's been a syndrome now for what..10 yrs..... Good luck!
  8. nayray

    nayray New Member

    I think the disease the last post was referring to is Huntington's Chorea, not Cholera... :) My friend's mom had it and it's just terrible so here's hoping it's not that.
  9. granmama

    granmama New Member

    "dlizard" has me scared and wondering...can Fibromyalgia progress to MS?????
    My son's neurologist has all but told him that he has MS. But, he has no lesions yet to confirm a dx. This has been a year now. The doctor wants to do a "functional" MRI as soon as it is available in the DFW (tx) area.

    But, when I hear of some of his symptoms, they sound like my FM problems. Of course, I have not had any visual damage as he has in the optic nerve.

    My family's gene pool really SUCKS!
    There is Diabetes, Hemochromatosis, Pancreatic Cancer, Depression, Fibro, and now MS?

    He is being treated now for just symptoms and has not been put on any "MS" drugs. He currently is on 1500 mg's of Depacote and 1mg of Klonopin daily. It does seem to be helping calm the jerking and leg twitching.

    I understand why you are confused and scared. If it helps, I think we all are scared in one way or another.

    granmama hug to you,
  10. Jillian40

    Jillian40 New Member

    We haven't met yet, at least I don't think we have.
    I just read your post and want you to know that my heart
    reaches out to you.

    I can understand your concern and anxiety about what you have just been told. Remember, that each of us is different, and the likelihood of your symptoms and diagnoses being JUST like your moms is probably not the
    case, though I think most of us deal with the stress of new and scary information similarly.

    We first think of the worst case scenario and scare ourselves really badly, then we begin to reach out and ask questions of others, then we start breathing again, catching our breath as though we've been holding it for hours and days through the fear, and and then slowly we begin to realize, finally and absolutely that we are one of God's most precious, and that God can and WILL take care of us, somehow through all of this, whatever our trial may be.

    I'm so glad that you are reaching out and beginning to get answers for yourself. Just remember that you are WISE and CAPABLE and that you will get through this, one step at a time, one minute at a time, one hour at a time, with God's help and those of us who are here to listen, pray and lift you up.

    Please love yourself gently, take risks for letting others support you, and don't give in, but do Let Go and Trust. If you fall, gently hands will catch you. Life is neither easy nor fair, but you are truly not alone. Please hang in there.

    <<<<<<<Hugs>>>>>>>>>>> .......... Jillian
  11. MelG

    MelG New Member

    Had a professional EPA certified lab come in to test our water. Came back positive for lead. EPA safe level is 10 (don't ask me what kind of units I'm in a fog today from lack of sleep). Our level came back 66. My blood tested negative for lead.

    So I'm pooping and peeing myself these days. Can't walk, can bearly talk right. Vision is messed up. I have no way to get to the doctors. Church is trying to line up help. No family in area. Hubby started new job and is our only source of income and insurance now. The State of New Jersey is pulling their P30 garage. You know the computer spits out a form for you to fill out "are you still disabled", then you have to take it back to the doc. Then it takesn 3 weeks for processing time.

    SSDI doesn't start to March.

    Three of my docs spend 6 hours yesterday trying to get me into a big teating hospital. Bottom line, neuro. has to get me in there.

    He told me and I quote "I put you on Copaxone, chronic pain needs to be dealt with by a pain specialist (who I have and is booked solid and can't get me in an emergecy appt. and even if he did I have no way of going there). Trying to get a driver hooked up through our church.

    Been fighting sleep. That is when I have the seizures and lose my bowels/bladder. They gave me klonopin for sleep and they knock me right out. I'm fighting sleep because I'm afaid I won't wake up.

    So 1:00 AM, trying to go potty, (urinary retention) and feel asleep (or something) on potty (no meds taken now) and fell over on the floor, hit my head and looks like a fractured my little finger.

    Have an open lesion near my elbow, got infected, getting better now. Dermotologist put me on meds.

    Can't keep track or meds or Copaxone. Sooooo tired.

    Before you all ask, NO ONE will come help me. You find out quick who are your friends.

    Have 3 appointments in February with neurologist. (these are emergency appointments).

    The worse is the total body spasms.

    I spent from 12:30 noon until 8:00 PM waiting to get into a hospital and finally couldn't get in.

    Can't take care of myself anymore. Son is in day care. Just want to get well. I need to be in the hospital. I can't manage all 20 of my meds. Can't remember when I took what. Yes I have it in a pill organizer. But I still get screwed up.

    My eyes go rapidly left to right, like REM while I'm awake.

    Oh this sucks.

    Big time attorney working on it. Our neighbors 5 year old daughter has 'FIBROMYALGIA'. Wells up the street contaminated with mercury, 2 blood away contamined with mercury & benzene. We are within miles from two superfund site. Gee I guess that's why I got SSDI in less than 6 weeks??

    Sooooo sick. Pain beyond pain.

    Rash on hands/arms/legs. 4 docs don't know. scraped it and looked at it under microscope. they still don't know.

    Just venting. Going to try my neuro. again. Maybe I'll catch him in a good mood today.

    Lawyer asked if I wanted to go door to door, get names and illnesses, etc. I really want to but I have to get well first. Or at least a little better.

    God Bless,
  12. kadywill

    kadywill New Member

    From the depths of my soul, I feel sorrow for all you are going through. The sympathy and compassion I have for you is immeasurable and I wish I could do more for you. I *can* pray and that is a lot. I know Vanessa is praying, too. Please try to focus ahead and explore every option~~I know your fear is to end up like your mother...I understand, as my mother died the exact same way and it was brutal for all involved. You are a young woman; the others were correct, especially Marcus, when he said that there is SO much research being done and answers being found for this disease. I wish I lived close by and could help you take care of your home and family.....I would contact your b-i-l's best friend about this. Support is critical.
    I love you and will remember you in my prayers!
    Love in Christ,
  13. coyote

    coyote New Member

    I am so sorry to hear all that you are going through. It amazes me that you could even answer my post about supplements.
    It seems to me that your Board of Health should be the one to do a neighborhood study of diseases. You certainly don't sound up to it anyway.
    Gee, I don't know, but are you eligble for a home care person or visiting nurse or social worker to come in and help you with your meds?
    The stuff you are going through sounds miserable. I will pray for you also.
    Maybe just try to take one day at a time. If you have a "higher power", turn it over to him/her.
    You don't have to have all the answers.
    Ther's another expression that I would liket to borrow, "If you take one step towards God, God will take 20 towards you".
    I'm sorry for the references from another organization, I hope no one is offended. It has worked for me.
    God bless you.
  14. coyote

    coyote New Member

    I am wondering why this message disappeared. Mayben I just couldn't find it.
  15. Fibromiester

    Fibromiester New Member

    There are many good posts here,I can't add much more except my love to you and peace, try to be calm and remain focused on what needs to done. Do not be afraid to go to sleep. Your body needs even MORE sleep if it goes through spasms and twitches,and your brain is in overdrive... you WILL wake up, to whatever God has planned for you. Don't be afraid, but turn to God for help. You can come here to us, we are your friends. Please tell your DR.s that you NEED HELP at home...TELL them that you have lost control of your bowels & bladder-I KNOW it's so hard to keep yourself clean all the time- you need HELP- ASK for it, OK? You keep praying, and we are praying, too. God hears. We love you!