Second opinion

Primary progressive MS
1

Hi,

I posted a short while ago my about my radiologist report which showed some signs of demyleniation. My neurolologist wrote and said he does not believe there to be any significant abnormality.

I would like to get a second opinion on this and wondered if anyone knew of a private ms specialist where i could get this done.

Thanks Christine

2

Hi Christine, not sure how to go about getting a private specialist…is your neuro an MS specialist? A lot of them aren’t. It might be worth looking for an MS specialist in your area. On hospital websites they usually list what the neuro specialises in. Then you can ask your GP for a referral to that specialist and see them on the NHS.

Another option would be to ask to have a lumbar puncture (LP) done. That is how most of us get diagnosed as even with an MRI that looks like MS it doesn’t always lead to a diagnosis.

Again, if your neuro won’t agree to one, you could ask GP for referral to another neuro…but if your neuro isn’t an MS specialist then I think that’s the way I would go if I were you.

Good luck. It’s hell having symptoms and no diagnosis as we all know only too well.

Pat xx

3

Hi Christine,

Your GP should be able to put you in touch with a specialist.

My neuro, and I imagine most others, do private appointments but, of course it depends where you live.

Hope you find someone soon,

Nina x

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4

Hi Christine,

depends whereabouts you are. I used http://www.matrixneurology.uk/ but a quick Google came up with "https://www.google.co.uk/#q=private+neurology+clinic " sorry this link is no good.

http://www.privatehealth.co.uk/doctors-and-health-professionals/neurologist/

I found that after a private consultation I could get referred to the NHS practice.

Good luck Mick

1 Like
5

Hi Christine,

Your GP should be able to put you in touch with a specialist.

My neuro, and I imagine most others, do private appointments but, of course it depends where you live.

Hope you find someone soon,

Nina x

1 Like
6

Thanks for all your replies and good advice. I think i will go with the route of asking my neuro for EP and LP first and see where this leads me.

I have no idea if i have ms or not, the scan showed multiple spot of high intensity and the radiologist reported they could be due to demyleniation although he never mentioned ms. As i said neuro said no significant abnormality.

My neuro is not an ms specialist but a nice enough person, much nicer than some specialists iv seen for other conditions.

Its been a struggle giving an account of my symptoms as things that have happened only once or a couple of times i have not mentioned. One of the strangest things that happened to me was hesitance when walking and my feet felt like they were sinking further and further into the floor.Blaance and dizziness happen every so often for a few days and then go. New symptons are numbness, muscle cramping and spasms and stabbing pain in my feet and legs. Symptoms that dont really go are fatigue, weakness and pain. The pain could be due to OA. I am also passing water every few minutes, even when iv been my bladdercan still empty large ammounts. Apart from fatigue the worst symptom for me is my confused thinking, not being with it, im slow to react and recall is very difficult

I have a relative with PPMS who had no symptoms until one day his legs gave way and the following day he could no longer walk.

He is so positive and despite his challenges he says he feels on top of the world.

Thanks to you all for been here, real experiences mean so much more than text book theories.

Thanks Christine

7

Christine, have you been tested for UTI? (Bladder infection). The bladder symptoms you describe sound very much like an infection which actually can also cause confusion & make you feel very unwell. I’m not suggesting all your symptoms are down to that, but if you do have an infection it will make other symptoms worse, and is also common with MS.

If you haven’t been tested very recently I suggest you see GP asap.

What your relative describes, having no symptoms and then his legs suddenly not working, is extremely rare in any type of MS. Losing mobility is usually a much much slower process. Remember, MS is different for everyone.

Take care…and see GP about your bladder.

Pat xx

8

Hi Pat,

Iv had bloods and urine test when i saw rheumy not long ago. He told me everything was ok.

Its possible that my relative with MS had some symptoms earlier but did not think they were serious, to be honest i dont know. He has lived a very isolated life with his parents and never gone to see his GP. He was in his 50s when diagnosed.

What confuses me getting a dx with ms is that what you read says ms lesions are easy to detect on mri scans. There size shape and location make it a simple process, yet people who have gone through the diagnosis say its not that easy.

Christine