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  • Multiple Diagnosis'

    Has anyone been diagnosed with Transverse Myelitis, Syringomyelia and tested positive for MS (O-bands showed up positive in spinal tap). Although I have all the symptoms for MS, have not been totally diagnosed with. My neuro has thrown his hands up and I will be going to Johns Hopkins for my first visit there in May. Would love to hear some stories if you have multiple diagnoses and about your first visit to Johns Hopkins. My pain is bad...on 90 mg avinza, 1200 mg gabapentin, and nortriptylene for night. Also, hydrocodone. At this point, my feet feel like cement, my ankles swell, my hips down hurt...deep to the bone. I also have trouble with both arms...elbow down to hands. Have had numbness in left ring finger, pinky, palm since 2008. Any thoughts on this? Is all of this caused by one of these disorders? This is what my neurologist cannot figure out. I've been tested for everything!

  • #2
    Hi I read your other post on this.

    I recently met someone with all of these symptoms who had diabetes (severe peripheral neuropathy). I was struck by how similar his situation was to MS (including speech, visual and memory problems), except for his lower leg swelling and discolouration, as diabetes affects blood vessels. Was your test for diabetes a glucose tolerance test, or just a fasting blood glucose?

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    • #3
      reply

      I've had both tests...I've also had to check my sugar and blood pressure every day for a while but I guess it certainly wouldn't hurt to try it again. Thank you for your reply. Anything would help at this point. Sometimes it's just the little tests that we forget about.

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      • #4
        Greer - my husband has MS and has lower leg swelling but I would assume that is mainly because he is not mobile.

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        • #5
          I have all of your symptoms. I'm recovering from spinal cord compression of C5-C6. Have you had an MRI of the "cervical" spine? Have you had a Myelogram?

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          • #6
            VaVaBoomer

            Hi, yes I've had an MRI of cervical region but not a myleogram(?)...what is that?? Here is a quickie of the cervical MRI in January 09...last one I had...oh, and the swelling only happens maybe twice a week...
            mild degenerative character observed at C5-6 greater than C6-C7, including mild non-lateralizing posterior disk bulges and concurrent annual tears. Only the C6-C7 disk bulge may have minimally progressed since 8/08. Negative MRI evaluation of the cervical cord. Thank you so much for your time.

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            • #7
              Liz, I had a demylenating brain stem lesion six months prior to my SCI. The SCI was caused by a fractured calcium deposit at T8-9. I have multi-level degenerative disc disease pretty much from neck to tail. I sense that my neuro gets very frustrated at times because it's hard to tell what's causing symptoms at any given time. He has flatly told me that the fact I have an SCI would make it senseless to do a spinal tap...he said the SCI alone would make the results show up abnormal, so would not be helpful in solidifying an MS diagnosis.

              If you live in NC...which your name seems to imply...feel free to PM me. I'd be very interested to know who your neurologist is. From what I understand, there are very few good ones in the Charlotte area. The one I see has been practicing a long time and has a very good reputation.

              BTW, I have had a CT Myleogram. It involves having dye injected into the spinal column then taking CT quality pictures. It can actually provide some good information. If you have one, make sure to lie flat on your back for as long as they tell you to afterwards. I ended up with a spinal headache after mine...NOT FUN! Good luck!
              "The truth will set you free. But first, it will piss you off." -Gloria Steinem

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              • #8
                http://www.neuropathy.org/site/PageServer?pagename=About_Facts
                visit this web site, it's very useful read the selection under Types of Neuropathy "Compressive Neuropathy" pay attention to the mentioning of ulnar neuropathy. Make sure to explore the entire site!

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                • #9
                  re: message

                  I will check this site out..thank you all very much. I am just trying to find out everything i can...

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                  • #10
                    where is your syrinx? syringomyelia alone can cause all of the symptoms you mentioned. Have you been to asap.org message board? there is a lot of information on there about all the symptoms people have. I also go to another site called http://www.smawareness.ca/ you will find a lot on both of those sites.

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                    • #11
                      to Laners

                      syrinx is located T3 - T12 with max at T5 (largest is 3mm)...thanks for info!!

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                      • #12
                        John Hopkins is the best for this type of work. I just had a second surgery to repair my T7-8 disc at Cleveland Clinic. THey did nice work. The last surgery was a microsurgery which only removed a piece of the disc, but did not fix the spinal cord compression. Cleveland Clinic removed the screws and rods put in from the last T7-8 surgery. I am in recovery at the moment. Post op 3 weeks. I also had surgery on my neck for C3-6 disc removal and fusion. There are other less minor issues in my thoracic and lumbar.

                        My symptoms were multiple issues including memory issues, brain fogging, headaches, legs that get tired and heavy, constipation, eye issues. These all started about 2 years ago. I was running short races 3 years ago when things started getting bad.

                        My neurologist is still going to do more testing in the next month. They think there is still something else wrong. So far, they have tested for MS, lupus, lyme, celiac, b12 deficient, cadasil (using genetic testing), and probably others.

                        You need to keep working with your neurologist and neurosurgeons. Some complicated conditions take a while. Be patient, but persitent. If dont like the answers, ask more questions, or move to another Dr. I have had over 100 dr consults and visits over the last 2 years. It has been a busy time.

                        Good luck.

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                        • #13
                          I have 3+ neuro disorders, and it's so frustrating...and as they're all linked in some way (TM, MS, RSD, encephalitis) it's often impossible to tell which symptoms belong to which disorder, so i just stopped caring. if it matters my neuro can distinguish which symptoms require which treatments. but most of my treatments have crossover effect too.

                          i went to jh early in my "neuro career" - before i had any definitive lab results (which i do now), and they refused to treat me, insinuated that i was nuts, and wanted me to return to see 2 of their related docs which happened to be running the only 2 clinical trials at the time. but it depends which doc you get. my neuro is brilliant, but he's not accepting new patients.

                          i'm now coming to terms with the fact that i will be in some degree of pain at all times. and with the rsd, i can no longer take pain pills and must rely on treatments that aren't covered by insurance. there are battles in every corner of fighting neuro/sci. i wish you the best possible results.

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                          • #14
                            ty Melanie & attention Dr's

                            Thank you Melanie for your reply. I just returned from John Hopkins and the doc said that I had an attack of TM back in 2008 but no longer am dealing with that. The TM caused damage to the sensors that carry info to my brain. I do, indeed, have a syrinx, which I will always have and will cause all kinds of pain and swelling in my ankles due to pressure on my spine. I also have an autoimmune disease that is unknown at this time. They drew 10 vials of blood for extensive workup. Seems to think it is antiphospholid syndrome but can't be sure. He also said that my vision was due to meds (can't look to the right ...eyes feel crossed). I go to eye doctor when I return and I have 6th nerve palsy. I'm wondering if all of this is related somehow. Anyways...thanks for the reply and I'm still a work in progress. God Bless!

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