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I probably shouldn't be here...but if anyone can help me...

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    #16
    Duramater: If I knew how to reply with a quote I would but re "Does it seem like any of this might help you ...do you think its worth investigating?" ABSOLUTELY! Thank you.

    If I could ask another question - would long term SI Joint Disfunction and Piraformis Syndrome eventually cause nerve damage? The Neurologist indicated that my feet up to mid calf had nerve damage. There was no reflex reaction above my heels and I couldn't feel the pin tests until mid calf. I never experienced any numbness until this past August more than a year after all of this began. This leads me to believe that whatever I have is getting worse and causing damage now.

    I guess I am getting very anxious about this now and thought I would have been diagnosed a long time ago. I booked a rare trip last April out of the country and at the end of November I have to get on a plane for 6 hours - I just can't see this being pleasure if I can't remain stationary for any length of time and am fearing the whole thing now.

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      #17
      First of all, I have no idea what you have or do not have...all I do know is that it is possible that nerve impingement can create nerve damage over time. The sooner you look into the possibility that this is mostly a musculoskeletal issue that may be causing a nerve impingement the faster you will be able to find relief. Chances are, since this has only been going on for 15 months and since there do not seem to be ANY other compelling medical opinions or diagnoses, hopefully you and your doctor will agree its worth a shot to treat your back for muscle strain, and possible SI misalignment.

      I am in the position to recommend one thing if your doctor says ok. Go arrange for a proper DEEP TISSUE massage and have them concentrate on your spinal column and gluteal muscles ( yes your butt), and hips. Take some ibuprofen before you go, if that medicine works well for you. This massage will hurt. Sorry but if I am correct about what has happened to you these 15 months the key is in how utterly locked up these muscles might be.

      PS. I have seen reflexes return as a result of proper treatment. I cannot say if yours will or won't. It might take some time.
      1FineSpineRN

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        #18
        Thank you

        Thank you SO much for taking the time to reply to me with your advice. I will contact my Dr. on Monday about looking into these things as a possibility.

        And than you to everyone else who cared enough to reply to me.

        This is really a great site with great people.

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          #19
          ooops...spelling...I meant THANK you to everyone else

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            #20
            Here I am again...

            I went back to the neurologist today as he had said he wanted to talk to me about gabapentin not working (I called) and finding something that would. He was starting to recommend Lyrica when I informed him that I had tried it and it hadn't worked...he went back in the file and said ..oh yes...(wasn't him who gave me that - was my GP).

            The thing is...there was no further testing than a normal Neurologist would do on a first visit..the needle thing..the electrode thing...then medicate? I think I have nerve damage now because I have waited so long for someone to find out what is wrong with me. The source of all of this seems irrelevant to "professionals"..I am just given pills to treat neuropathy? I asked about physical therapy and deep tissue massage and he said anything like that would only be a temporary measure..and not worth my time.

            I asked if this could have all happened because of a B12 shortage I had which was discovered after I first went for all of this ( I basically stopped eating meat at age 3 - I do eat it but rarely). He said - no...that it was corrected now because of the monthly shots I get.

            The new med will be Apo-amitriptyline...I will gradually ease off the gabapentin and ease into this other one.

            I have low hopes. My left knee is swollen and I have trouble walking..both hips are sore I limp and 2 days ago I woke up with my right hand absolutely numb..a new occurence...I neer slept on that arm as I can only sleep on my left side...because the freezing sensation is less.

            I don't know...if all a Doctor's duty is - is to dispense pain pills (if so I could bea Doctor easliy) ...and not find the reason for the pain...I feel deep down inside (and I am not stupid) that it all came about from lifting heavy objects beyond my capacity..and something has gone very wrong...yet doctors have no time to find out why...and just dispense pills.

            SIGH

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              #21
              I would also like to add that the Nuerologist said that because he felt my leg (at THAT time) he didn't feel coldness..I get in a hot shower however...and my legs are frozen..they feel no heat when I touch them...it's hard to explain...but my warm hands feel ice cold legs - no matter how long in a hot shower.

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                #22
                How about seeing a chiropractor? Get a consult from your GP Maybe?
                www.worldonwheels.ca

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                  #23
                  I did go to a chiropractor...at $45 dollars a shot 3 times a week. It had no affect. In fact...she tried to crack a certain joint in my back and it didn't work..so she said...let's try this again...so she did...there was no cacking noise with her manouever and she simply said "excellent" and sent me on my way.

                  That is when I quit the chiropractor. Seemed like bullshit to me that I couldn't afford.

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                    #24
                    I know my problem may seem contrite to most of you..but I am digressing and scared...forgive me if I search for an answer...here...there...and everywhere.

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                      #25
                      Your first description of a vision issue then motor skill/sensory issues developed.

                      You may have had a mini stroke.
                      Last edited by Rbrauer; 17 Oct 2008, 8:58 AM. Reason: Was already posted you've seen a neurologists..
                      Rick Brauer or just call me - Mr B

                      http://www.riseadventures.org

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                        #26
                        At the time my eyes started closing in with a white light... I thoughtI actually was going to die...going to the white light and all...was getting ready to go to work...this delayed me for half an hour...scared me ...realized how fragile life was. But someone at work said she had the same thing and said her doctor said it was an occular migraine seen in women experiencing menopause...so I accepted that.

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                          #27
                          Originally posted by Rbrauer View Post
                          Your first description of a vision issue then motor skill/sensory issues developed.

                          You may have had a mini stroke.
                          I was thinking the same. A possible stroke of the brain stem which effects both sides. Did your MRI cover your skull also? Have you had a lumbar puncture? And with the cold and pain...any time with a vascular surgeon or vascular specialist? PAD can make for freezing legs and over time effect nerves. Like lack of blood flow can cause foot drop. Then the lack of blood flow can move further up the legs. There is a simple test for PAD your GP can do. Have you had a second opinion on your lumbar spine MRI?
                          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


                            #28
                            This all began in June 2007. I waited until January 2008 to see a referred Vascular Surgeon. He came in the room tested my pulse areas and said I was too young to be there. No other tests. Waited another 4 months to see an internist who basically feels everything is psychosimatic and had students with him at the time to try and justify his reasons for ailments as being internally manifested....he sent me for blood tests...and when I returned for the results said I would never die of a heart attack (I rarely eat meat). Waited another horrible 5 months to see the neurologist who said I had "unknown" neuropathy....and has been giving me drugs that have no effect. Lyrica - no effect. Gabapentin - no effect. Amitrypiline - no effect. 4 Doctors have looked at the spine MRI and said this shouldn't be causing my problem. I see my GP on Monday as I was thinking perhaps it is all related to my knee - which I have had a problem with since my teens. It feels swollen and gives out a lot lately. I am going to ask for an MRI and Xray...but really...at this point I am thinking I am a pain in their ass. Meanwhile nothing they give me works...and I wonder why they give meds but couldn't care less about the cause. How can one say it's neuropathy of an unknown cause and just dish out chemicals? It's all too bizarre. I have been trying to find out what is wrong with me on my own. Neuropathy has certain symptoms and from what I have read I really am not fitting the description. When I asked the neurologist if he had ever had someone there who experienced painful freezing sensation he said - well yes - that is worse than the burning sensation. Here - take this. Numbness came to me 14 months after my initial complaint of freezing calves and feet which leads me to believe...things are getting worse....and damage is being caused. My quality of life is dwindling as I can not sit for long nor stand for long. I went for a very long walk today...and it doesn't matter anymore...the freezing is always there now no matter what I do..even while trying to sleep...I think I walk funny now...not just a limp...maybe I am protecting my leg..because I never know if my legs will function the way they used to..the numbness and all...I trip for no reason....or the knee gives out.
                            Thanks for responding...I appreciate any advice/insight I can get.

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                              #29
                              A possible stroke of the brain stem which effects both sides. Did your MRI cover your skull also? Have you had a lumbar puncture?

                              The answer to those would be no. What is a lumbar puncture?

                              Comment


                                #30
                                A lumbar puncture is also called a spinal tap. While MRIs see physical changes such as plaque in the brain or spinal cord indicating MS or other problems a lp is a sample of cerebral spinal fluid that shows bacteria, blood or viruses in the fluid that would indicate an infection like encephalitis, guillame barre syndrome, etc. Not that those would be likely. The puncture is normally not very painful. You're given a local in your lower back and then while you lie curled on your side a needle is inserted to withdraw a small amount of fluid. The couple days after can be very painful as the fluid needs to replace itself. Laying flat on your back and icing the neck helps. Pain meds do not.
                                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

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