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Folks with MS (or possible MS)...a bit of a rant

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  • #31
    Originally posted by wheels4one View Post
    Danine,
    I was on Betaseron for 9 years. I started having more bad side effects than I should so my neuro took me off it 2 years ago when I had to go to the hospital. I had a UTI and it triggered a relaspe.
    We had talked about Solumedrol since I did well with it. I started it in the hospital then every month for a year. So far I have not had any MS problems as of January 2007.
    That's interesting...January/February, 2007 is when I was finally semi-diagnosed. My doc used Solumedrol followed by oral steroids which seemed to work well...except for the fact that I got nasty side-effects from the oral med's. I didn't realize they could use Solumedrol long-term. Thanks for the info. I'm glad you're doing well now.
    "The truth will set you free. But first, it will piss you off." -Gloria Steinem

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    • #32
      I did everything I was suppose to do for five years than I was told it was Transvermylitis. I went off all drugs for 3 years only to go down hill at a slow rate but down hill. I just went back to a neurologits underwent all the MRI's and spinal tap to be told I have MS .... I can't walk well or hardly at all now but it is either very small or it is in remission.

      I feel your pain!

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      • #33
        Thnaks for sharing, tbelle. It's a frustrating process!
        "The truth will set you free. But first, it will piss you off." -Gloria Steinem

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        • #34
          This thread was started as "a bit of a rant". Here's mine. MedlinePlus states "No one knows what causes MS. It may be an autoimmune disease... There is no cure for MS, but medicines may slow it down "
          (http://vsearch.nlm.nih.gov/vivisimo/...erosis&x=0&y=0)
          Plaques in the brain don't seem to be directly related to disability status. I never bought the autoimmune theory or agreed to drugs which "may" help a poorly understood problem.
          Cognitive decline is typical in MS?I think NOT! More likely it's a Rx side effect. "This is your brain. This is your brain on drugs". Experimental therapies bring to mind my favorite line from the movie The Fly: "Be afraid. Be very afraid.".

          A plethora of information is attached. Some is considered to be from reliable objective sources; some "anecdotal". I find it all to be fascinating.

          J Neurovirol 2000 May;6 Suppl 2:S147-51
          Exogenous factors may play a role in the etiology of multiple sclerosis.

          Curr Neurol Neurosci Rep 2001 May;1(3):271-6
          Prevailing dogma is that MS is an immune-mediated condition; it fulfills none of the criteria of an autoimmune disease. Significant data suggest that infectious agents(s) could be involved.

          J Roy Soc Med 2005; 98: 303-306.
          This casts further doubt on the notion of MS as a primary autoimmune disease.


          SEE ALSO:
          http://www.spinalrehab.com.au/Updates/MSChlamydia.htm
          http://www.townsendletter.com/Jan2005/lyme0105.htm
          http://www.chlamydiae.com/restricted...esclerosis.asp
          http://www.ncbi.nlm.nih.gov/pubmed/1...opt=3DAbstract
          http://brain.oxfordjournals.org/cgi/...act/124/7/1325
          http://www.geocities.com/HotSprings/3468/chlamydia.html
          http://www.ncbi.nlm.nih.gov/pubmed/1...opt=3DAbstract
          http://findarticles.com/p/articles/m...4/ai_111271881
          http://erj.ersjournals.com/cgi/content/full/23/4/499


          David Wheldon was born in 1950 in Moira, Leicestershire, England. He read Medicine
          at Bristol... he studied Pathology, Medical Microbiology and Neuropathology at the Radcliffe Infirmary, Oxford. He has practised medicine since in many parts of England and Wales.
          http://www.davidwheldon.co.uk/ms-treatment.html
          "Let your food be your medicine" - Hippocrates

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          • #35
            Thanks, goat. I don't have time to read through it all right now, but I'll definately give it a look when I get some extra time.
            "The truth will set you free. But first, it will piss you off." -Gloria Steinem

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            • #36
              Again goat, thanks for the links. I read through them and find the info quite interesting. I've never heard of the potential link to Chlamydia pneumoniae. I have heard some speculation about a relationship to lyme disease.

              Personally, I tend to believe that a lot of the so-called auto-immune diseases are really just different manifestations of one disease or a very small group of related diseases. I think that the field of medicine has become so highly specialized that doctors and researchers can no longer see the forest for the trees. It's unfortunate, as it's always the patients who suffer.

              I noticed that you've had MS since 1984. I also noticed your signature, "Let your food be your medicine." What have you discovered to be most effective over the years for improving your health?

              Thanks.
              "The truth will set you free. But first, it will piss you off." -Gloria Steinem

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              • #37
                (Sorry for the long delay...)
                I have always eaten healthy & exercised often. Years ago I was ignorant & believed "Doctor knows best". Early symptoms diagnosed as MS. Bad side effects from meds. Changed meds, then changed MD's; learned more & stopped all meds. Little confidence in Conventional Medicine when I see shingles, Macular Degeneraion, etc resolved thru Unconventional Medicine. Found a great, new MD, MPH who looked for the problem cause; never found one. I slowly deteriorated. Definetly felt worse w/o a daily BM. Went from cane to walker to chair over 16yrs. Lost use of one arm/hand; then, over the next 6yrs - lost most use of other hand/arm.

                Found a new MD; did new tests (http://www.metametrix.com/content/Di...les-BloodUrine). Added targeted supplements (based on test results). Considering the earlier posted references & my status - pathogens might be the cause. Improvements have been seen 2yrs after a rigorous protocol of constant antibiotics. Speech is much better, 8hrs sleep is fine (previously needed 12hrs), & can tolerate warmer temps (max 68 before is 78 now).

                [rant follows...]
                Spent a very frustrating 9 months trying to find an aquatic Rehabilation program (anywhere!) to see what can be regained arms/legs/etc. In GA - Emory rehab essentially said they can do nothing, I'm wasting their time. Glancy Rehab Hospital has no aquatic program. They sent me to Gwinnett Medical, but their PT doesn't get in the water. St. Mary's Rehab & St. Francis Rehab don't have a pool. Shepherd will see me for 1hr, twice a week (not nearly enough to be effective). Warm Springs no longer operates the pool (it's dry). Walton Rehab & NE Georgia Medical Center have a pool, but won't allow MS patients in the water. Lanier Therapy in Motion had an aquatics program; the pool they had a contract with is now in Foreclosure!

                Caribbean Rehab in US Virgin Islands & Madonna Rehab Hospital in NE told me not to travel so far - I should stay stay close to home. Cleveland Clinic won't allow MS patients in the water. I could make an appt for an evaluation (and then go home) at: Good Shepherd Rehab in PA, Kessler Rehab in NJ, Rehab Institute of Chicago, Sister Kenny Rehab in MN. It goes on & on...

                Like so much else - "If you want a job done right, do it yourself". I've now hired 2 guys for 2 hrs 3 times/wk to get me in a local pool. I'll do Rehab myself.
                "Let your food be your medicine" - Hippocrates

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                • #38
                  Originally posted by goat View Post
                  Like so much else - "If you want a job done right, do it yourself". I've now hired 2 guys for 2 hrs 3 times/wk to get me in a local pool. I'll do Rehab myself.
                  I hear your frustration. I have a membership at a local aquatics center too. Luckily, I can go there on my own...I just ask the lifeguards for help if I need something...like moving my walker to the end of the ramp so that I can get out of the pool, etc. Anyway, I've been really lazy since the summer...it just got too hot for me to go outside. I need to get myself back on a schedule!
                  "The truth will set you free. But first, it will piss you off." -Gloria Steinem

                  Comment


                  • #39
                    I was finally diagnosed with MS in 2007, but had symptoms for about 25 years. I had many diagnoses earlier (some completely ridiculous, but...). I finally have a great team of doctors (neurologist, pain management, PCP), along with a great orthopedic surgeon (I've had two discs replaced). I was on Copaxone until my last MRI one month ago, and because it was stable, my doctor said I could stop taking the Copaxone injections for now and we'll treat any flare-ups with steroids and maybe go back on the Copaxone or another medication.

                    Also, I took Betaseron before the Copaxone, but had a bad reaction, so we switched to the Copaxone about 2 years ago.

                    You need to find the best doctor available.

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                    • #40
                      Hi danine!

                      sorry things suck. Its nice to know your still around, I haven't seen you too much lately. well, not at all actually.
                      I dont know too much about Ms, except I have two close friends who have had it for years. both show white spots on their MRI's. not in the same places, but also, both were suspected to have Ms after exams by a neurologist. one was sent to a neurologist from a chiropractor. he later said he very much suspected Ms, because of reflex reactions. one is now a quad. I have known them both for about twenty years. Both have progressed, or had sudden attacks of Ms, that respond to high doses of prednisone. and both have optic nerve abnormalities, and more lesions as time passes. also they have gotten some test that looks at the myelin sheaths around nerves to see if it is eroded. I dont know what that test is called.

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                      • #41
                        Jody - Danines post was for December 2008.

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                        • #42
                          awe, I guess I miss here posts. I hope she is well.

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                          • #43
                            Don't feel bad Jody. I've been missing in action too. I had expected to take a 'vacation' from moderating for awhile when my mother-in-law was getting sicker back in 2009. She died in September of that year and about the time we had finished helping my brother in law with her affairs my mother was diagnosed with terminal colon cancer. After a surgery that seemed to have her sounding better than she had in years the biopsies said terminal. Due to a lot of things we helped my Dad find a good nursing home that would help her maintain her strength and health as long as possible and would be close to Dad. We were home all of 6 days when my Dad called late that night to say Mom had died very unexpectedly. I realized today that it has been almost a year now.

                            I'll try to be back on every few days and dig up more answers when possible for members. I actually had an MRI of my brain and brain stem a few years back to rule out any doubts about MS because clinicaol trials are beginning in some types of SCI. I'm an incomplete quadriplegic, for those new here, due to an ischemic spinal stroke in May of 1992. I'm a C5-7 and was given methylpredisone when I was admitted to the ICU of the Zentral Klinikum Hospital in Augsburg, Germany. Yes, 100% American but my husband was working there at the time. From first pain in my elbows to an induced coma and intubated was 3 hours and the steroids were started about 10-11 hours later. This was when they were a new treatment but I was rapidly trying to upset their mortality rate and a very great resident there pushed for me to get them. I believe I would be dead or still on a vent if I hadn't gotten them.

                            Anyway, I'm back. And I still do not know more about non-spinal paralysis such as CP, traumatic head injuries, visual problems not related to MS, TM or Devics or the other rarities in the neuro area. I can help with how to search for information though. And I have no medical degrees of any kind. In emergencies call 911 or go to your nearest urgent care/ER do not wait for answers here or on the other forums.
                            Sue
                            Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                            Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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                            • #44
                              Sue, I had noticed your absence and was concerned - am very glad to see you back here. You were one of the first people to welcome me when I joined CC and it meant a lot to me. What a hard several years you've had! I'm so sorry for your losses. Welcome back, I look forward to your posts and wish you all the best.
                              MS with cervical and thoracic cord lesions

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                              • #45
                                Originally posted by jody View Post
                                awe, I guess I miss here posts. I hope she is well.
                                I miss Danine and the others that often posted when I stumbled in here lonely and scared for my hubby the end of 2009.
                                Fresh out of 6 week ICU, 4 mo rehab, a couple months in our new home and back to hospital with pneumonia for 2 hellish months of docs telling me to put him in NH.
                                The familiar faces and names here were soothing and now many gone.
                                Much of our survival and my sanity has to do with the people here, most unaware.
                                I felt more confidence to do this thing when the trach and vent and other appliances added after hospital.
                                Forgive me for repeating our story.

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