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Have no idea what to do next....

Last March I started having some odd symptoms, my spine hurt my shoulders hurt everything hurt. After a trip to the doctor’s I was referred to psyhio therapy … after 3 sessions nothing got better in fact I was in more pain than before… the pyshiotherapist sent me straight to be admitted for tests for MS after lots of red flags started to appear. I was walking with a huge gait on my right side, extreme pain, bladder weakness, my eyesight was horrendous and I’d lost use of my right arm completely. After seeing a neurologist and having an MRI nothing was found so I was sent home with a follow up appointment in 3 months. Everything seemed to get a little better pain wise - follow up appointments with the neurologist shows he’s not concerned and doesn’t think anything neurological is going on. 2 months ago I had a huge flair up. I lost use of my right arm and hand had extreme muscle weakness and pain like I’d never experienced before. Tingling, burning and feeling like nynmus let was being ripped from my bone. My face kept dropping to one side, my speech slurring almost like stroke like symptoms. When I went back to the doctor’s they were adamant it was MS and sent me straight back to hospital for more tests. Had another MRI of head and spine on Monday and was advised the results had come back satisfactory so i take it it’s come back normal again. I’m now on 28 tablets a day to control the pain and I’m now at a cross roads has anyone experienced this and what did you do?

This is a tough one since nothing showed up on your scans? Although i have not experienced any of those symptoms or at least to that extent.

My first symptom was double vision and that has been constant for 11 months now. My first MRI scan was brain only and it showed areas of inflammation and lesions around my brain and from that and other symptoms they were able to diagnose me with RRMS. My second scan was brain & full spine and it showed new areas of inflammation around my brain and lesions within the top of my neck.

My guess that it may be something else as nothing showed on your scans but your symptoms are typically seen with MS. I hope you get the answers you deserve soon!!

Hi

I haven’t had any symptoms that you have had but that’s nothing new for MS as they say on here, but I have had double vision sixteen months now the opticians put me forward to my doctor, he then referred me to the eye hospital they corrected it with a prism. Told me to come back in a few months, this time though he told me that he wanted me to have a MRI and that set the ball rolling and I had an appointment with the neurologist.

When I received a letter it was then that I found out about demyelinating disease and that I had legions in my brain. Also that he wanted a lp, blood test and a second MRI. Fast forward to now I have had my lp but I am waiting for the MRI the neurologist has already given me an appointment in April, so it’s just waiting.

I have a lot of back pain but I have hurt my back in the past and have sciatica but for some reason I have a nasty pain in my left hip this time last year it was my ankle. Cocodamal 30 doesn’t touch it I have to have nerifen as well and both together it dulls it down.

I am on a journey that many people have to get a before you get a conformation yes or no. One doctor a neurologist the one who did my LP said that we are looking at lots of things it maybe. but hopefully we will find out what it is we won’t stop until we find out what it is.

Kay

Hello jenjen

You’ve had a rather roundabout way of having neurological tests in order to find a cause for your symptoms.

It’s unusual for a physiotherapist to either suggest MS or refer a patient to the hospital for testing. It’s also unusual for a GP to decide (against the previous evidence from the neurologist) that it’s MS.

The usual way of things happening is that you are referred to a neurologist (or the neurology department at the hospital) by your GP after they’ve suspected there could be a neurological basis to your symptoms. A neurologist then examines you and takes a history from you. Thereafter, you may be sent for tests, including MRI scans. At this point, the neurologist may suspect MS, or a different diagnosis, but until tests are completed no diagnosis is made. Once the test results are back, the neurologist makes a decision as to whether there is a neurological cause for your symptoms, and what that neurological cause is, ie, they make a diagnosis.

If you have a negative MRI, but later develop more symptoms, you might be re-referred to the neurologist. Again, your GP wouldn’t ordinarily suggest that you have MS. If the neurologist then does another MRI of brain and spine which is again negative, then it seems clear that you do not have MS.

I suggest you go back to your GP and ask what else might be causing your symptoms and where you go from this point.

Best of luck.

Sue