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Recently diagnosed with MS, BUT is this be right?

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howeller1952
howeller1952

Hi All, I am male, 61 sufferer of COPD, Almost twelve months ago I started with tingling in my fingers, numbness, cutting and burning my fingers without noticing, dropping things...after being treated for carpel tunnel for six months and in constant pain in my back, neck and legs my wife made me go back to see my GP, he reffered me to muskuloskelatal specialialist who said is was not carpel tunnel but my problems were all connected to my brain and referred me to a neurologist at Salford Royal. Had MRI brain scan and neck scan in January. Neck scan showed Spinal cord compression. Brain scan showed large white mass and demyelination. Neurologist mentioned the demyelination being MS but without a lumbar puncture couldn't confirm it but said the back pain was not connected to my neck pain as first thought but he wanted an MRI of my back, and he referred me to neurosurgeon but stressed he didn't think the surgeon would operate due to my COPD. Neurosurgeon happy to operate if pre op and anaesthetic reveiws are all okay...appointment for both next week...all being well op on neck scheduled for beginning of May. In the meantime back MRI showed similar problem to neck in L4, L5.S1, neurosurgeon said operation needed there too. What startled me a bit, when speaking to neurosurgeon he asked me how were my problems with the MS? I explained I had not actually been diagnosed with MS they had just found some demyelination. Neurosurgeon said he did not need a lumbar puncture to diagnose MS in my case. I was shocked as no one had actually said I had MS. In previous examinations my reflexes were found to be brisk but this could have been caused by the spinal cord compression. I am clumsy but this also could be caused by the spinal cord compression. I am going to ask them to do a lumbar puncture when they do the operation on my back but as this will be many months off as the one on my neck is more important, is there anything I can do in the meantime to say if I definitely have MS or not?

0 likes, 4 replies

4 Replies

  • PaineFury
    PaineFury

    Posted

    I always thought to confirm MS there had to be an MRI with lesions and a lumbar puncture with Oligoclonal bands and raised proteins. There also has to be two distinct attacks to confirm, I think the medical professionals have treated you rather badly! Lumbar puncture is recommended
  • patricia48825
    patricia48825

    Posted

    I am confused by your story. In my case I was under a Neurosurgeon who then referred me to the Neurologists as demyelination had been found. The Neurosurgeon said he was not the right consultant to see for suspected MS. My Neurologist has said that even though lumbar puncture showed oligoclonal banding and brain scans show demyelination, as I have one inflammatory brain lesion he does not say it is MS until I am shown to have two inflammatory brain lesions. I have had very many "attacks" followed by periods of remission.

    As you have had a definite diagnosis you will have to inform your car insurance company.

    Good luck.

  • jugu
    jugu

    Posted

    I too had MS and spinal cord compression in the neck. The spinal surgeon concentrated on the compression and when he told me that uf he saw this in normal person he would recommend surgery as compression it self could paralyse you.

    MS was confirmed due to demylination in brain and spinal cord in areas without compression. No spinal fluid checking required as it's evident from MRI.

    I have left drop foot and left hand probs and my right side isn't as it should be but it's good.

    Waited 2 years before having neck opp as wondered if the root cause was MS, decision was made easier due to stable MS but compression getting worse. Glad I went through with it as have slight improvement, been 3 years post op now. My MS didn't show active lesions so that damage may have been over the years I'm 50 now, with first double vision episode around 10 years ago and drop foot around 7 years ago. Nothing new since just have to manage with existing symptoms.

    Had second opinion with orthopaedic surgeon and went with him rather than a spinal surgeon who wanted to do invasive front and back opps with rods and screws.

    I was fixed with one corpectomy and disk removal from the from with cage and plate to hold things in place. Have around 90 percent pain free neck movement.

  • christine75972
    christine75972 howeller1952

    Posted

    A vitamin B12 deficiency can often mimic MS. Absorption of this vit can be more difficult as one gets older so I have been taking sub-lingual B12 ( methylcobalamin) for about 5 yrs now and have had much relief.  I am 64 and was diagnosed with benign MS 9 yrs ago. Vit B12 is water soluble so any excess is excreted ie can't overdose on it. Having too much is not a problem but having too little can be. Although diagnosed with 'probable' MS I'm not so sure.

    Hope this is helpful.

    PS If you decide to try B12 supplements you may find that symptoms are temporarily worse before they get better

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