Hi, I’ve been a lurker but am now facing results day. All started with jaw/ear discomfort. I have a partially erupted wisdom tooth on that side so had a couple of dental appointments. Dentist won’t remove the tooth as its not decayed but I have had repeated infections from the the tooth and pocket cyst. Dentist noticed I had a tremor when I reached for the mouth wash and said I should see my GP. I have a family history of essential tremor so didn’t go to the GP. Tweaked my upper back playing sport at Christmas, had horrendous pain for 10 days which settled but left me with a residual numbness. Bit bullet and went to GP. Mentioned the intermittent jaw/ear discomfort, the numbness is classic T1 compression apparently. Got referred to Neurologist… Had initial appointment he found nothing wrong on examination but given my history referred me for EMG, NCS and MRI of brain,spine, spinal cord and shoulder area, had bloods taken for everything, lymes, B12, thyroid etc etc. Asked about eye pain, I’ve never had any, I have astigmatism so do get double vision if I over use my phone or a computer screen. Had my EMG/NCS before “lockdown”. MRI done on 18th May. Got a phone call from hospital 3 days later to say I’ve got a telephone follow up appointment with Neurologist next week, so results are in. All moving very fast. MS has been mentioned. Any advice as to questions I should ask? Thanks for reading
Hello Pirran
It all depends on what the test results are.
If the neurologist diagnoses MS, ask what s/he feels the subtype of MS is. The options are: relapsing remitting MS (the most common), or progressive. If your symptoms are coming in waves, or relapses, which then completely or partially remit (aka recover to normal or nearly so), then RRMS is most likely. But if the symptoms don’t ever remit, then progressive, either secondary (coming after a period of RRMS) or primary (never having had a phase of relapses).
So, the most common type of MS being the RR kind (about 85%), most people are diagnosed with this initially. In which case, there are two things to discuss. The first is disease modifying drugs (DMDs) which are prescribed to ward off further relapses. There are numerous DMDs available for RRMS, but sadly few of any offered for PPMS. The big problem at the moment with regard to DMDs is Covid19. The largest number, and in fact the most effective DMDs require either more vigorous testing prior to starting them, or more invasive methods of ingesting the drugs (ie intravenously). But you could be easily prescribed a drug called Tecfidera - a moderately effective DMD (50% fewer relapses on average) and one which is an oral therapy, delivered to individuals at home and requiring only moderate pre-prescribing tests and follow-ups. Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid for information on all the DMDs.
The second thing to discuss are any ongoing symptoms you have for which there could be treatments available. So write yourself some notes if there are any ongoing issues you need to discuss with the neurologist.
Lastly, there is ongoing preventative things you could be doing to help in the future. The first is exercise, at the present time physiotherapy is in short supply given the need for social distancing, but might be available to you in the future, should you need it. In the meantime, it’s a good idea to generally improve your fitness if necessary. In particular, work on your core, this will pay dividends in the future if you do have relapses or symptoms that will affect strength or balance. Another thing you could ask the neurologist about is high doses of vitamin D. This is often suggested by neurologists for people with MS. But it’s a good idea to get your GP practice to test your levels initially. You should also ask what the results of your B12 blood test were as many people with MS find they could do with additional B12.
Obviously, all of the above is only relevant if the neurologist diagnoses MS. If s/he doesn’t, then you’d need to ask the question what else could be the problem - and the answer to that will generate further (different) questions.
Best of luck.
Sue
Thank you Sus, All duly noted. I’m an active person regular runner and tennis coach but I neglect my core. I now have a list of pertinent questions. I’ve started taking vitamin B12, luckily I’m a marmite fan already Kind Regards Pirran