Thank you Jibby, I hope my Dr is as informative as yours. I will prepare carefully for the appointment as it will be a long wait for the next one. Nice to have some support from you nice people!!!
As a Neuroborreliosis patient I thought I would offer a thought. My Lyme disease mimiced MS. I even have white matter brain lesions, tingling, twitching, heat intolerance, fatigue, and other symptoms. I was given steroids twice to "calm down my immune system," and I got much sicker because my immune system couldn't fight back much anymore. I began a downward spiral of new and worsening symptoms. I went through a dozen doctors and a 3 day hospitalization before I figured it out for myself through my own research.
I am not a doctor and I don't know enough about your symptoms to offer any opinions for you, but I have heard of other Kiwis with Lyme. I don't know if it is in NZ, or if they got it in Australia, N. America, or Europe. But if you find yourself getting worse on immune suppressing drugs, stop them and ask for testing for Lyme Disease. In Australia, the majority of patients test negative at local labs. However, many test diagnostically positive at IGeneX, a specialty lab in the US. If you start feeling better and symptoms decline on immune suppressants, then you can be confident it is indeed an autoimmune disorder.
I am sorry you are facing this! I know it is a hard time. I hope you get definitive answers soon!
Thank you for your sensible approach to my question. My GP thought I had herniated disc..i.e. paralysis but when I eventually got an appt with a orthopedic Dr he saw the white matter (neck is a mess) and referred me onto the Neuro.
I think RRMS because I have sloooowly built strength back up in my shoulders but other stuff comes and goes. I am hoping for RRMS because of the modifying meds available now. My mouth is not numb but the Neuro said I had no reflex in my jaw and shoulders..must be a coordination thing.
Thanks again
Hello,
Sorry to hear you are going through this but agree with Maria, if you are dx. with MS. it would be important to know what type so you can make an informed decision about tx. options.
I would also say that your DOC should take time to answer your questions!
write them down in order of importance to be sure you get them answered.
My doc discussed tx. options and recommended a medication for me and then asked me to reveiw information and we then discussed it...He had no problem with me asking him questions about WHY he chose it...AND explained everything so I was understanding what he was thnking.
Please let us know how you make out...
Jibby
Hi and welcome to our little group.
There are 4 types of MS, so it is necessary if you get the diagnosis to know which one you have, as there are different treatments for them.
Most people start with relapsing remitting and can be put on disease modifying drugs all of which can have some form of side effects.
From your post it doesnt sound like RRMS. You say your symptoms started about 2.5 years ago, did anything happen prior to that, did they just start, have they waxed and waned etc.
There are so many things out there that can really mimic MS, and even show up lesions.
When he says your spine is in a mess is it because of problems with discs etc?
I take it your mouth is numb?
Mariax