Had my MS specialist Appt...SO FRUSTRATED!

CG,

I am baffled!! I feel your anger and pain! I wish I knew what to tell you to do but I don't. Hopefully someone else will be along soon to give you advice.

I am here for you though if you ever want to vent!

Lysha

What is frustrating is knowing there is a clear neurological issue here that is affecting my body. The positive LP and lesions say that.... And I said "if its not MS what is it?" And she said "There are other inflammatory conditions that cause these things but you have already been tested for them and do not have them." So that probably means it IS ms... I just dont want to wait that long. Do you think a second opinion is warranted?

Warranted? That decision is one only you can make. This forum will tell you, in most cases, that we have all been where you are right now.
Some are still waiting, after a year or years, (yes I said years) for a conclusive DX of some kind. Realizing that the frustration you feel, has been
felt by others with all kinds of diseases, including MS, doesn't help. It didn't help me, it won't help you. There is a part of us that wants an answer, and we want it now. But, we are not thinking about what a Mis-diagnoised situation would mean, because we pushed to hard.

Only you can do what you feel you need to do. I personally don't see any harm in getting a second opinon, but you need to realize that they
may want further tests of their own that you have already had. They may want to talk to your present doctor. You may not get in for months
to see another doctor as a new patient. They may take a wait and see attitude too. In the meantime, nothing would have changed. You still would have symptoms, frustrations, etc.

I learned that it is not the DX that is important. It is trying to control or comfort......the pain, the symptoms, the anxiety, the exhaustion and what ever else is pulling you down. After all, if you have MS, that is what they will do anyway, and then talk about CRABS. Slowing down the progression. But being able to get on with your life, makes a world of difference.

As I see it, slowing the progression is an important point. IF you do have MS, the general advice is to start you on CRABS ASAP. Therefore, if your current doctor is unsure, then a second opinon may make sense. Time is important in this case.

But Uppity is right. Steriods are not something to take lightly and could cause more problems than you have now. Likewise, it is never wise to take meds
that aren't for a specific purpose. For example taking Provigil (or something like it) for a DX of exhaustion, not MS, makes sense. Taking Baclofen for a DX of the spacity of legs, not MS, makes sense. Etc.

But the bottom line, as always.....is do what you need to do. I had 3 neuros. The first was a huge mistake, claiming that all that was wrong was my
hypertension medicine needed to be changed. It took a Opthomologist/Neuro to take a good look at things, and even when she actually wrote on the her files that I had MS, she still refered me to an MS specialist for another look, another point of view. I was not happy that my DX took over 6 months
but I am grateful now because there can be very little doubt that I don't have MS. They looked under every rock on this planet I think.

But, I also have to say, that I was being treated almost the whole time by my family doctor for symptoms, pain, exhaustion, depression and other things that I am still dealing with. It made the time easier to manage. But the time they took did take its toll. I wasn't on CRABS during that time and there is, in my case, a difference in my first few MRI's and the one after I got the "official" DX 6 months later. Would CRABS have slowed it down and perhaps I would not have had new leisons that appeared during the wait? We will never know and frankly it is water under the bridge.

Weigh the facts, and while doing so, get some help for the problems of your body and then proceed down the road. And realize, that nothing is as simple or as straight forward as you would wish, with this disease or any other un-curable problem. Otherwise we would have a quick DX and a quick cure. For now you have given your doctor a puzzle of a thousand pieces and the picture is yet to show itself.