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  • TM and MS

    I know I am uninformed but I need to know. Can TM be caused by the start of MS? My Dr. is doing more test for MS because the TM (numbness) is not getting better and I am now having a jerking in my leg when I lie down at night. Also having headaches more often . They are testing me this coming week doing a VER test, as well is another MRI with contrast. My last MRI was in Oct. when this started. I am tired after doing very little and they have put me back on steroids as well as the provigil that I am already taking. The Dr. keeps bringing up MS and it really has me worried. The only thing I really know about my TM is that they told me I had an impressive legion near my cercival column. (whatever impressive legion means). At the onset I was numb on both sides and could hardly walk. After being in the hospital for 4 days and given steriods through my IV I was able to walk again but the numbness remained on the right side. Thanks for any information I can get. Drs. really don't explane a lot.

  • #2
    Originally posted by penny Grubb
    I know I am uninformed but I need to know. Can TM be caused by the start of MS? My Dr. is doing more test for MS because the TM (numbness) is not getting better and I am now having a jerking in my leg when I lie down at night. Also having headaches more often . They are testing me this coming week doing a VER test, as well is another MRI with contrast. My last MRI was in Oct. when this started. I am tired after doing very little and they have put me back on steroids as well as the provigil that I am already taking. The Dr. keeps bringing up MS and it really has me worried. The only thing I really know about my TM is that they told me I had an impressive legion near my cercival column. (whatever impressive legion means). At the onset I was numb on both sides and could hardly walk. After being in the hospital for 4 days and given steriods through my IV I was able to walk again but the numbness remained on the right side. Thanks for any information I can get. Drs. really don't explane a lot.
    Penny, the cause of TM is not well understood. Often, it may be the start of MS. That is why your doctor is looking for the presence of demyelination in other parts of your central nervous system. Generaly, the diagnosis of MS is made when you have "plaques" in your brain and spinal cord (indicating demyelination (in multiple locations). If they don't find other lesions, that is good. If you have MS, there is a potential role of giving you interferon and other drugs that reduce MS. That is one of the reasons for looking.

    Wise.

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    • #3
      Wise, Thanks for your reply. I went to the Dr. today and good news, I do not have MS. The bad news is I am beginning to realize my Dr. is altho very bright he is young and does not really know much about TM. I realize that that no one really does but, he knows a lot less than I have learned, just by reading this web site. I don't mean to be a pest, but I am slowly giving in to depression and because of the lack of insurance I cannot shop around for other Doctors. Is there any information out there as to things I can do to at least be proactive with this ? Thanks for being there. penny

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      • #4
        Wise, Found out today I do not have MS. Dr. said to take the Gaberison for pain and call if anything else happens. Just wanted you to know. penny

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        • #5
          Penny, the leading research and treatment center for TM is at Johns Hopkins University in Baltimore. Any chance you could go there?

          You also may want to get in touch with this organization:

          Transverse Myelitis Association

          Are you working? If not, have you applied for SSDI or SSI? Are you eligible for Medicaid in your state?

          (KLD)
          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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          • #6
            Penny, if you PM me your general city, state area I can hook you up with the nearest TM support group. I have the latest book so that also goes for any one else. No exact addresses, etc., needed.
            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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            • #7
              Originally posted by Sue Pendleton
              Penny, if you PM me your general city, state area I can hook you up with the nearest TM support group. I have the latest book so that also goes for any one else. No exact addresses, etc., needed.
              Sue

              Sue, I live in Thomasville, North Carolina

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              • #8
                Originally posted by penny Grubb
                Sue, I live in Thomasville, North Carolina
                Check your CareCure email Penny. It's probably under User CP if not a direct to your ISP.
                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.

                Comment


                • #9
                  Originally posted by penny Grubb
                  Sue, I live in Thomasville, North Carolina
                  Not uncommon that your Dr. knows very little about TM or MS for that matter. My first question with any of them is this - how many Dr.'s are ACTUALLY remissing their patients disease? The answer is ???????????? What they sure know the standard B.S. drugs to give you to destroy your body. YOUR best bet to acheiving a better quality of life is to keep on researching on your own and finding the a Dr. that will work with your ideas / suggestions.

                  Try Googling these topics:
                  LDN
                  HBOT
                  Calcium EAP

                  Comment


                  • #10
                    BB, the TMA, like the NMSS can help those who suspect or have been diagnosed with those conditions. Most docs suggested by members of both organizations not only listen to patients but are up on the latest in non-traditional interventions.

                    Unfortunantly for those with docs who are not up on the latest or who live in the boonies you have to deal with who you have. Without a doctor it is impossible to get many compounded medications or have insurance pay for accupuncture for shoulder pain (my current problem).

                    But I do believe it is up to the patient, when possible, to question medications if after a trial period they do not seem to be doing anything or worse, seem to cause more problems.

                    Originally posted by bbogden
                    Not uncommon that your Dr. knows very little about TM or MS for that matter. My first question with any of them is this - how many Dr.'s are ACTUALLY remissing their patients disease? The answer is ???????????? What they sure know the standard B.S. drugs to give you to destroy your body. YOUR best bet to acheiving a better quality of life is to keep on researching on your own and finding the a Dr. that will work with your ideas / suggestions.

                    Try Googling these topics:
                    LDN
                    HBOT
                    Calcium EAP
                    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.

                    Comment


                    • #11
                      Standing up for the medicos

                      Y'know, I think we are asking a lot for the ordinary General Practitioner to be able to keep up with all the medical knowledge that is available these days. The National Organisation of Rare Diseases website lists 600 complaints and my injury from Spinal Dural Arteriovenous fistula is not even listed, so obviously there are a lot more that you could classify as rarer than rare diseases.
                      Then the GP, having gained the knowledge of the common, rare and rarer complaints, including symptoms, treatment and suitable drugs must be able to keep up to date with continuing progress.
                      Here in Oz, many doctors use a database where they enter the patients symptoms, so in my case - sore feet and saddle area, difficulty in weeing, ascending sensory loss, developing limp on left side. The database says possible MS, diabetes, circulation problems in legs, spinal stenosis, possible Cauda Equina. All came back negative. The doctor said 'I don't know what's wrong with you'.
                      So that the patient (me) has to inform himself by trawling the web, including this site and request a MRI for detection of a possible AVM. I agree that GPs should provide an expert service but I am in touch with some SDAVF sufferers who put themselves on the medical assembly line and followed the prompts who are now in wheelchairs due to long delays in detection of the fistula.

                      Comment


                      • #12
                        MS Forum

                        Here is a great forum to join. Handles Q & A's on MS treatments from actual patients. Covers those treatmenets that do work and those that do not. I belong and have found great info on Calcium EAP, Candida cleanse, HBOT, and my all time favorite... LDN.

                        http://health.groups.yahoo.com/group/mscured/

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