My rheumatologist has told me I light have ms and she has ordered an mri scan of my spine. I’ve been reading up on this thread and is that right or should it be of my brain? I’m so confused! My appointment was yesterday but she said I need to see a neurologist but I’ve not been referred yet. I can hardly walk and my legs are really weak. I can just about get about with a walker or crutches if I’m having a good day, but am housebound d most of the time. It’s all a bit rubbish! Can you guys tell me how they find out if you have ms, what tests are needed? I’m scared and which tests do I need? X
That is a lot of questions, Kittens, so lets try to de-mistify the whole business.
You need a neurologist to make a formal Dx of MS.
Maybe your rheumatologist feels that a spinal MRI is as far as she can go without hitting the “professional ethics” problem.
Maybe, given problems with your legs, she suspects that there could be inflammation inside the spine.
Now, MS. There are no tests FOR MS.
the Dx is a process of elimination, that could include VEP tests, nerve conductance tests, MRI tests, a physical examination, a lumbar puncture, and a whole string of blood tests.
These are all intended to rule out other things, so when MS is what’s left, then that is the Dx.
Some neuros will reach a decision quicker than others.
When you get such a Dx, that is when you can claim under Critical Illness Cover in your life insurance (if you have any).
This is when you must tell the DVLA and your insurance co. if you drive.
You do not have to wait for a DX to get a Blue Badge if your walking is really that bad.
What you should be ready to do is to ask your neuro about DMDs when you get the Dx (read the section on this web-site about treatments and therapies - https://www.mssociety.org.uk/what-is-ms/treatments-and-therapies).
Hope this helps
Thank you for your reply. I’m just a bit thrown by the whole thing! I’m seeing my Dr tmr so maybe she can shed some light on what’s happening! I certainly hhope so. To have a probably ms then no further info is doo g my head in to be honest. The rrhemy has also asked for a muscle electro test thing. So waiting for appointments now. How long did your diagnosis take if you don’t mind Me ask ng?
Of course you can ask. I will even answer!
My first Dx was Transverse Inflammatory Myelitis (about 4 weeks after onset, and aftyer a physical exam).
Then, after several MRIs, another physical exam, an LP. all in a year, the Dx was changed to MS (lesions were starting in my brain).
By all means talk to your GP. She may not want to get involved with things that are the concern of a neurologist, but may be able to help with controlling any symptoms.
Do note that the neuro should write to your GP, and that you should get a copy of the letter (it’s in the NHS Constitution).
Just remember that you are the way you are right now - any formal diagnosis will not alter that condition one tiny bit. On the other hand, once you have a Dx, you should also be allocated to an MS Nurse, and are now in line to qualify for a drug treatment (the rules for which vary from place to place - the post code lottery).
Also remember that there are a lot of folk on this forum with all sorts of expertise - so do not be afraid to ask for help or advice.