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Frustrated!!!

Posted , 3 users are following.

shelbyrae
shelbyrae

Does anyone have numbness as a primary symptom of their condition???? I was diagnosed with cervical stenosis with spondylosis with myelopathy & 2nd & 3rd opinions from neurologists say there is no way that generalized numbness in arms,legs, torso could be myelopathy.... I'm so frustrated & having a hard time mentally dealing with numbness, weakness, & heaviness in limbs.... Having further testing done but would like to hear any advice... I'm so tired of hearing different opinion from doctors & not knowing who to trust!!!!

0 likes, 11 replies

11 Replies

  • mike09523
    mike09523 shelbyrae

    Posted

    Hi shelbyrae,

    There is nothing worse than other people, especially specialists, knowing what is wrong with you and what is not.

    I have c/s with spondylosis and myalepathy and the usual tingling, numbness and jolting spasms, all textbook stuff as far as the condition prese ts itself

    . I also have bladder problems and very heavy feeling/tired and sore legs. These last two problems are nothing to do with my c/s acording to my Neurosurgeon. However after having 4 invasive and uncomfortable scans/tests, involving tubing and my penis, it was found that I was getting involuntary spasming in my bladder spincter muscles which interfears with my urine flow, put down to, by my Urology specialist, the spinal cord being trapped inside the spinal canal by osteophytes

    Now my legs are giving me real problems and I have to get that sorted by a sceptical Neurologist who suggests the two cannot possibly be linked, something that he also said about my bladder problem not being linked to my c/s and cord/osteophyte problem.

    • shelbyrae
      shelbyrae mike09523

      Posted

      Wow! You're really having a tough time too mike... So sorry to hear.... None of these doctors agree on anything & you try to do the right thing & get a 2nd & 3rd opinion & it just makes matters worse! aren't bladder issues and leg heaviness/weakness symptoms of spondylosis??? I'm so confused by all the differing opinions I've had I don't even know anymore.... I have also started very recently to have urinary hesitation which is concerning so I'll probably have the joy of visiting a urologist too soon.... I think the thing that is hardest to cope with right now is not knowing what's causing all my symptoms & which do doctors to believe... How r u coping mentally with all this- any advice?
  • mike09523
    mike09523 shelbyrae

    Posted

    Hi shelbyrae,

    Coping mentally has been very hard. I have just ended my course of councilling, 19 sessions, to help my mood swings. I had an accident at work which triggered the cervical spine problems. One day a healthy and strong person then gradually degrading week by week to a man incapable of carrying out the most simple of things. I am lucky to have a most beautiful and caring wife, of 46 years, who has been my rock and I don't think I could have got through without her.

    Life has thrown plenty at us this last 5 years but I am much more settlled mentally and rise above it now. I was diagnosed with malignant melanoma a month ago and had to have several moles cut out, one was serious and required more to be removed. Hey ho cut away as long as it's taken care of. My biggest worry???? will I have my dla replaced with the same rates as pip, if not then something else to worry about. Best of luck for your future, mike

  • steve36143
    steve36143 shelbyrae

    Posted

    Hi, I joined a facebook group called 'Cervical Myelopathy Support Group' All bone, muscle and joint conditions. This is the type of things we discuss everyday especially the numbness, heaviness in limbs etc with our myelopathy. There are people in the group who have had myelopathy for many years. People are all at different stages of the condition and would be able to help you. The C4 phrenic nerve can effect the torso - the weakness and heaviness in the legs is a common symptom of myelopathy. Do you have any problems with your hands? Have you heard of myelopathy hand? Have you had ACDF surgery?
  • steve36143
    steve36143 shelbyrae

    Posted

    Hi, I joined a facebook group called 'Cervical Myelopathy Support Group' All bone, muscle and joint conditions. This is the type of things we discuss everyday especially the numbness, heaviness in limbs etc with our myelopathy. There are people in the group who have had myelopathy for many years. People are all at different stages of the condition and would be able to help you. The C4 phrenic nerve can effect the torso - the weakness and heaviness in the legs is a common symptom of myelopathy. Do you have any problems with your hands? Have you heard of myelopathy hand? Have you had ACDF surgery?
    • shelbyrae
      shelbyrae steve36143

      Posted

      Hi Steve,

      Thanks for replying... Just sent a request to join the group- also in 2 othes on fb & they are very helpful as well.... Comforting to hear that some of my symptoms may be from myleopathy like 1st dr had said... 2nd opinion feels that I have something else going on with some sort of neuropathy... Yes I do have a lot of clumsiness with hands, sensitivity to cold sometimes, & numbness/tingling... Was all set to have acdf surgery but my family wanted me to get 2nd opinion & I'm really regretting it...1st neuro & 1st neurosurgeon both were in agreement that my symptoms were myelopathy & 2nd neuro & neurosurgeon do not agree I have enough compression for this to be causing all my symptoms.... I'm scared the longer I wait to have surgery the more damage is being done to my nerves & they won't heal but it has taken forever to have more tests & try to see other doctors....getting results back from emg today to see if there's any nerve damage & going to see 3rd neurologist tomorrow.... Back to 1st neurosurgeon on Tuesday & hoping to schedule surgery as everyone seems to at least be in agreement that disc needs to be removed whether it's cause of symptoms or not.... What have your symptoms been???

  • mike09523
    mike09523 shelbyrae

    Posted

    Hi shelbyrae,

    Reference to your emg tests. Did you have the shock tests and the needle tests? I only ask because when I had the shock test everything was as it should be. However then I was asked how I was with needles!!! When the needles test was carried out every reading was NOT as it should have been. It was at that point that I was reffered to a Neurosurgeon.

    My fingers are clumsy, my legs do not feel part of me , I feel as though I am throwing them in front of me when I walk, and they get tired and throbbing within a minute of walking. I don't get the tingling and pins and needles like before but I am taking 600 mgs of Gabapentin 3 times a day, so the cause is still there although I can't feel it as much.

    • shelbyrae
      shelbyrae mike09523

      Posted

      Hey,

      Yep shock & needles test last week... That was fun...not...going in a couple hours for results... This will be from the dr. who thinks there is something going on with neuropathy & not anything to do with myelopathy so it will be interesting to see what results are... I am very nervous & just want to know what is wrong with me! I have 2 young children & my husband has MS so we already have our hands full.... This has been so distressing & confusing & I just want some answers and a way to help me heal...

    • shelbyrae
      shelbyrae mike09523

      Posted

      I also have been taking gabapentim 2x's a day but only 100mg... Obviously you are in a great deal more pain than me... Have you had surgery yet?
  • mike09523
    mike09523 shelbyrae

    Posted

    Hi shelbyrae,

    The Gabapentin dosage was lower to start but was increased because of my involuntary spasming of my arms and legs jumping about. I was in terrible pain which is why I was put on morphine patch, thank goodness, I was in agony for 5 months before it was sorted, Tramadol didn't do anything. I was offered an operation of fusion at c4,5,6 and7, which was then cancelled three times in11 months. I took that as a sign, and now I have 12 monthly check ups to monitor things. Good luck this afternoons gp meeting.v

    • shelbyrae
      shelbyrae mike09523

      Posted

      Oh my goodness... I am speechless after my appointment with 2nd neuro... First of all emg was normal.... No nerve damage which is great... I'm having biopsy study of small nerves to rule out any other issues... But now he is thinking it could be some kind of toxic virus from shellfish that I picked up that's causing these symptoms since I had a stomach bug right before i had symptoms....still doesn't think my disc bulge is causing myelopathy like 1st doctor thought...what do you think??? Going for 3rd opinion tomorrow- just would like some consistency....and then when i asked him about disc bulge he said I would need surgery... But pretty much he doesn't think its causing my symptoms....this is nuts... Why were your surgeries postponed???? Talk to you soon
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