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Thread: Who here has MS?

  1. #51
    As I understand it, TM is a one-time event and the damage can be devastating, depending on whether the entire diameter of the cord is affected, or half...and the level of the damage is important, as well. There is usually some degree of recovery from TM, but sometimes not much. TM is confined to the cord but is not MS of the cord, strictly speaking - MS tends to produce demyelinating lesions in the brain and the cord, alike, and it is not unusual to find several lesions scattered at different levels of the cervical and thoracic cord. MS lesions also tend have a characteristic appearance.

    Since David's lesions are in the brain and there are many of them, he probably does have MS; but one of the most maddening things about MS is that it is a diagnosis of exclusion, as there are several "MS mimics" that need to be ruled out before a definite diagnosis can be made. Nowadays, clinical examination combined with blood analysis and MRI form the basis of diagnosis, but some individuals have such a clear-cut history and presentation that an experienced doctor can make the diagnosis without a lot of testing; other patients have such a confusing combination of signs and symptoms that lumbar puncture might be performed in order to support the doctor's suspicions.

    I have heard that TM, when it occurs in a young person, does not predispose someone to develop MS, whereas in an older person, it is often seen in retrospect to have actually been the first symptom of MS. But my neuro told me that I might have actually had MS since I was a child, and it took the intersection of many influences to set off the post-appendectomy chain of events. TM is in some ways as mysterious as MS. TM often appears following a viral infection, but not always.

    My neuro wasn't entirely sure that I had MS until lumbar puncture gave strong support for that diagnosis, and none of the other tests refuted it. There's a lot of research going on right now, and a lot of different theoretical camps. The only thing that comforts me, in a macabre sort of way, is the realization that there's no cure for any of these baffling neurological conditions - so in some senses, it doesn't really matter which came first, TM or MS. Our brains frantically try to work out a timeline and a linear sequence of events that we can get our minds around, but those efforts usually end up producing more questions than answers. And then there's this: a person might have MS and something else.

    I know that David was really taken down hard by that first attack. It does seem like an extreme presentation of MS, assuming there hadn't been any niggling odd symptoms in the preceding years (but then, who doesn't have those!?). And there are many MS patients who don't fit the acknowledged categories. There are even some researchers nowadays who question the whole idea of MS types. Maddening!!!

  2. #52
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    Thank you for explaining a bit more. He was tested for everything under the sun, he was actually in the hospital from October thru December with test being run everyday. From simple blood work to a brain biopsy and they couldn't find anything else so they ruled it MS. His numerous spinal taps all came back good, I think he had 7 of them in 3 months. The last MRI he had a couple of years back showed lesions all gone and no permanent scarring. I have to believe it is MS just because we cant find anything else. Looking back, and we have talked about this numerous times there is no signs that presented themselves in the past except for bad headaches with flashes of lights and that was just months before the attack. I must also add, that while in the hospital in October it was discovered David had two staff infections so I want to believe the infections lowered his immune system so low that the MS just took off and went haywire. Although Drs won't confirm my suspicions, thats what I will believe. And also that with no other attacks, I want to believe alot of his problem now is just rebuilding the muscle that he has lost due to being down for so long. But you know how insurance is they only allow so many visits a year and they dont care if its a broken wrist or MS or whatever. So its mainly been left up to us and thats hard fitting it all into my schedule to try to help him and I can't afford to hire someone to come in. We have tried the whole aid thing numerous times as well and they start off good and then fizzle out.

  3. #53
    Quote Originally Posted by MSWIFE1 View Post
    I have to believe it is MS just because we cant find anything else...I must also add, that while in the hospital in October it was discovered David had two staff infections so I want to believe the infections lowered his immune system so low that the MS just took off and went haywire...you know how insurance is they only allow so many visits a year and they dont care if its a broken wrist or MS or whatever. So its mainly been left up to us and thats hard fitting it all into my schedule to try to help him and I can't afford to hire someone to come in.
    Oh, what a nightmare that acute illness and the whole diagnostic process must have been! And continue to be, as you deal with the fallout. And with obstruction from the insurance companies, and in-home aides that didn't work out (and probably made your worries worse). My hat is off to you and Dave. Really and truly, from the bottom of my heart, I salute you and each and every loving caregiver. It's a nightmare to see someone you love suffer and not be able to fix it.

    I think that patients' and caregivers' gut instincts are often much more accurate than the official reasoning, and if you see a connection between the staph infections and David's worsening condition, you're probably correct. You might never know the exact how or why of what happened, but it seems entirely feasible to me that sepsis could have played a big part in how this whole picture unfolded.

    Considering the sheer number of tests David had, it certainly does seem as if MS is the culprit...in the end, it's a label for the insurance companies to hang their decisions on, and a way for you and David to organize your thoughts and plan of action. The neuro that I told you about put it into perspective for me and my husband when she said that the main purpose of the label was to ensure that we could get prosthetics, equipment and MS drugs if we needed them, and that we had a "password" that would allow us to see busy consultants who don't want to go through a diagnostic process from scratch. So when my husband and I talk about MS (which we do all the time, we obsess about what our next steps should be), we know it's shorthand for: We have this label and it's an umbrella we're under as we go through the storm.

    One of the many things that drives me nuts about the diagnostic dilemma is that many of the diseases which must be ruled out before arriving at MS are themselves diagnosed by a process of exclusion...talk about a Catch 22!

    I hope and pray right alongside you that Dave will be able rehab his muscles and steadily gain ground. He has a remarkable, loving life mate in you, and I know you feel equally blessed by him...through dark days and bright, a partnership like that takes on a mighty life of its own.
    Last edited by Bonnette; 10-02-2010 at 08:17 PM. Reason: spelling correction

  4. #54
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    Thank you for such kind words. I am so thankful for opening this thread and find people such as yourself who truly understand. I do wish there were more MS'rs here.

  5. #55
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    I tend to think that the stress of a surgery and or an illness can let an exacerbation come through if you know what I mean. I feel like they (the symptoms) are always in the background just waiting for a weakness to exploit.

    I woke up from my surgery in June with my arms spasming terribly. I have had marked weakness and balance issues since then. I have a C-4 to T-2 problem with fusions and thought initially that my neck had been injured by the position during surgery.

    I have to be careful not to move my arms too much or they begin to spasm and my hands curl up to my wrists. Very painful and very inconvenient when trying to do things like cook or drive. The spasms are just as bad today as they were in June when the surgery took place.
    Anything worth doing, is worth doing to excess

  6. #56
    Quote Originally Posted by MSWIFE1 View Post
    I do wish there were more MS'rs here.
    Yes, I so agree.

    Quote Originally Posted by skippy13 View Post
    I feel like they (the symptoms) are always in the background just waiting for a weakness to exploit.
    That is such a good way of putting it.

    Those arm and hand spasms are awful. I never had a full appreciation of how important the neck is until all of this happened.

  7. #57
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    So true Skippy...I notice when ever David is getting upset or worried or just down right mad, his leg starts bouncing around like a jumping stick and then his left arm starts to curl more (his left hand is normally in a curled position, well not normally but normally since the MS)

  8. #58

    Smile Hi all!

    Things have been hectic and stressful these last couple days! My husband's ex-mother-in-law is staying at our house for a couple days...weird!!!!!!!! We get along fine tho and she's here to spend time with my stepson (he's 28). Anyway, the more stressed I get the more stiff and rigid I get.

    I finally started 50,000IU of Vitamin D3...I have 3 months of it to take. I hope it has some positive effect on me! I also went to my first day of PT for my spasticity this AM. Nice lady...she is going to try to get a standing machine for me and help me get the right w/c cushion too. I'll have two MS specialists to work with me and I'll go twice a week.

    I am thinking about dropping my baclofen from 20mg 3x a day to 10mg 3x...I'll do it slowly over a couple of weeks. I had to do it before when they upped my baclofen and I got more rigid. That was lastyear and my PT then was the one that mentioned that I should try it (lowering it) and I did get less stiff then. We'll see. How are you and yours?
    "What has happened, has happened; What I am going through, I shall rise above; And what will come, I will meet with courage"~Hazrat Inayat Kahn

  9. #59
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    Hi Snuz...I am very interested in the Vitaman D theory. We just went to a MS banquet thing the other night and they were talking alot about it and say it just makes you feel better overall. Did they give you a prescription for that amount or how are you doing it? I also find it amazing that what is suppossed to be a muscle relaxer can cause opposite effects.

  10. #60
    Hi Snuz...husband's ex mother-in-law visiting, wow! That would kick up spasticity, for sure!

    I wish you every success with your new plan of action. 50,000 IU of D3 for three months sounds like a lot...but I'm no expert, maybe this is the new thinking on Vitamin D supplementation. Please keep us posted and, again, the very best to you!
    Last edited by Bonnette; 10-04-2010 at 11:16 PM. Reason: Added comment on Vitamin D3

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