Fibromyalgia Action UK

Recently Diagnosed with MS, but is this correct?

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?

9 Replies

Hi there, I'm so sorry to hear about all your health problems & can understand your concerns. However I wonder if you have come on to the right forum for advice? This forum is for people who have Fibromyalgia.

I hope you can find a forum where you can get the help you need.


sorry, I typed in Multiple Sclerosis and it came up with Fibro and MS.


Hi howeller, I'm sorry I can't help, but, ken, The Author, may be able to. He may be busy right now, or sleeping as he is up and about during the night, but he has experience of ms. I hope you get the answer you need, Julie xx


Thanks Julie


Hi howeller1952 :)

I'm sorry to hear your news about the MS it must have been a bit of a blow after years of suffering and COPD is difficult enough to live with and manage.

I personally do not have experience or knowledge as such about these illnesses but I do suggest that a chat with your GP about your concerns may be a good idea. I would tell him/her what you have written here for example as it explains how you feel and describes the situation quite well.

Health Unlocked has many forums that you can register with also that you may be able to receive more appropriate guidance and advice on this subject as well as the advice you get from us here :)

You could also check out this link to

Whatever the situation and wherever you are you won't be alone. I sincerely hope you get your answers howeller1952 and wish you wellness and healing :)

:) xxxsianxxx :)


Hi howeller1952

I sincerely hope that you are feeling as well as you possibly can be today? I am so sorry to read that you were left with such confusion over your MS diagnosis. My wife has Primary Progressive MS, and to get her diagnosis she underwent a brain MRI, just like you, and this is all you need to diagnose MS.

However, the lesions which are demyelination can spread to the spinal cord, but only at the top end of the spine, and this is why they like to undertake a lumbar puncture to assess the spread of this, but it is not necessary to ascertain a MS diagnosis.

On the MRI of your brain you can see multiple white patches that can either be spread over the brain or cluster together, and this is the MS. If you only have one single lesion on the brain this is diagnosed as a single event and not classed as MS, as more than one lesion is required. From what you have written it sounds like you have more than one lesion showing on your MRI.

It would be a really good idea to discuss this with your GP or Consultant and obtain MS medications and get a classification of which type of MS you have, as there are three main categories: Remitting MS, Secondary Progressive and Primary Progressive.

I genuinely hope that you can find some resolution and relief to this issue and get some answers to your questions.

All my hopes and dreams for you


1 like

Thanks for the reassurance. I have another appointment with the neurologist next week and will let you know how I get on.


Thank you howeller1952, I look forward to hearing what happens, and the best of luck to you.



Hi,i feel for you and wish you well,i am in a situation weather I have fibro or ms,i recently lost my hearing and it's came back partially,i have lost weight and I have limited taste and smell,i have chronic back pain,severe pain the whole back and mobility problems with walking,i can't stand long now my new syptoms are breathless I find it hard to breath,i saw a nurse and a lung test showed slight lung damage I am 41 and nurse said I have lungs of a 57 year old now she wants me to have a test for cancer an x-ray but she mentioned copd I spoke with gp and she has ordered a mri brain scan to check for ms, I wish you well and can you shed some light for me on copd,thankyou sarah


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