ebarb said...
Thank you for your responses!
I think maybe it was a little confusing when I was talking about the doctors. The first one I saw was a Neurologist, then the one my mother in law recommended is actually an internal medicine doctor (very knowledgeable and actually spends time with her patients!) and she gave me the referral to a Neurologist that specializes in MS. But he is out of office for the next few weeks so I am going in late November.
The first doctor was very dismissive and didn't even want to listen when I was trying to tell him new things that were going wrong, like my arm decided to stop working or something and I couldn't hold the marker to write on the board in class! (I am a teacher) And in my medical records from him, he says he doesn't see anything wrong and after one more visit he is going to discharge me from his office! I was like woahhhhh! I knew right then that I needed to see someone else, whether or not it is MS.
How many times did you have to get MRIs before they could say whether or not it was MS? I told my husband I am pretty sure they will do at least a couple more before the doc will say either way.
It is just hard because I can't do anything for at least a month when I see the new neurologist.
So I am stuck here in limbo, not sure what to do. The internal med doc said that the new neurologist will change me from Lyrica to something else because it is not really working. And I have gained 10 pounds in 3 months! She gave me Ultram to help with the nerve pains. I took one yesterday and I was wide awake, I couldn't fall asleep until 3 am!
Well, then -- if the internal medicine doctor is the one who referred you to the neuro specialist, then here's what I'd do:
Wait for the specialist appointment. (I know it's no consolation, but just a month's wait to see a specialist really is a very short amount of time! Some folks wait months and months!). If the specialist confirms that it is MS, find out if the internal medicine doctor is willing to be your primary care physician. Mine, for example, takes care of ALL my health needs, including anything related to MS. If she needs to, she consults with a neuro on my behalf. This saves me a lot of time (and money!), and the primary care doctor (who also happens to be an internal medicine doctor, in my case) knows anything related to my health situation, and can take care of it.
If the internal medicine doctor isn't willing to do that, then be sure that the neuro is willing. (Not all are. Some neuros just like to diagnose, then refer patients back to their primary care doctor. In your case, though, it sounds like you had a good visit with her, and this might work well.)
As for additional MRI's: MRI's are diagnostic tools, not treatment tools, of course. So if the MRI is clear and the lesions are there, in areas that are suggestive of MS, it may not be the case that the new neuro sends you off for more MRI's. On the other hand, some doctors only trust their radiologists and their MRI machines, so it may be that he'll have repeats done, just to be sure.
As for the Ultram: I'm not familiar with that drug, so this is a general statement: Many medicines need to be taken awhile, and as prescribed, before you can decide whether they're "working" or not, or if the side effects are minimal enough that you can manage them. It may be that the wakefulness is a side effect of the Ultram that will diminish over time. You should carefully read the label, or go to the Ultram website and see if that's a side effect and if there is anything there noted about it.
All you really can do right now is sit tight, wait for your specialist appointment, and be ready with questions for him. To prepare, you want to write down all your symptoms, when they first started to occur, whether they've intensified or worsened over time, or lessened, whether there is any sort of pattern to them (like, do they worsen if you're overheated, or overtired; or after exercising; or...)
Start with the MOST troublesome, and work your way to the least troublesome (just in case you don't have time to get through your whole list, at least the worst will be there on top!).
Take the list with you..and someone else who can help you take notes of what the doctor says, or suggests. You'll be overwhelmed, both by the stress of the meeting and the information thrown at you, and it'll be good to have some back-up help.
Go to the National MS website and begin reading. Make sure your symptoms seem to match what you're seeing there. Reading there might help you figure out questions to ask, and be helpful when you talk with the doctor.
Some folks wait for months for doctor appointments, and sometimes YEARS to actually be diagnosed. I hope this will go much more smoothly for you.