Calling all limbo-landers limbo check in 9/13/2011

[RenInKy]

Minivanmama: Thank you for your encouragement. I'm sorry you are feeling so badly and still in pain and more so that you are still waaaaiting!!!! That is the most difficult part.

Derrie: I hope your rested well last night and could get the "what ifs" out of your mind. I'm sure the MRI itself went well and now the wait!

Yes my neuro scheduled me for Sept 29th for my MRI (all 3 c-spine, t-spine and brain). I go to him in October 18th and he will read the MRI and if not conclusive, he will do the LP there, that day. So, I'm really hoping the MRI will tell him......something..... I don't know what I want it to tell him, but I'm hoping to avoid the LP.

I live a little over 2 hrs from neuro, so thinking of riding back after the LP is a little unnerving. The one I had in 2007 was locally and although I did exactly what they said, I still had a horrible headache.

Like you, I want an answer, but don't want the reality of the dx. He did say if the results are conclusive he will put me on a round of steriods. I just want SOMETHING!

Hugs to all!! I hope everyone had a better day today.

Renee

[derrie]

Arrrrgh, I hate the wait. And in a small town, the wait likely means "until my appointment next week," as opposed to the same-day results I was used to in a larger town.

Had the MRI-- they're never that fun (the durn machine drowns out my music), especially with the contrast injection. Just feeling worn out. Ready for some sort of magic answer to my random problems.

[derrie]

Hey team limbo! So my c-spine MRI was "totally normal"! Did a little happy dance at my desk.

On the other hand, I think this means my neurologist is going to do more stuff. Yick.

At what point do I stop letting him test me for things and just say, toss it, I have funny random symptoms; I will live with them; enough of these visits to the doctor?

[jsoxfan618]

Hi MVM, Hi Everyone
Disclaimer: I'm trying to write while I have a bad migraine, so bare with me if I drag on or don't make any sense in some spots. I apologize that this is a long post as well.
Sorry I haven't checked in on the "Island" for a while. Its been a long tough summer and well... to be honest not much has changed until yesterday anyway (I'll get to that later). I still don't have any answers still. I've even started to wonder if this may be early Parkinson's and not MS. Not that I want it to be either one.

I'll start by sharing that I had an appointment @ Mass General in Boston with yet another MS Specialist in early August. He was nice and took the time to listen, but surprise... surprise he couldn't make any recomendations because he did not have the records that were supposed to be sent to him by my original MS Specialist. It took until yesterday for him to call me back after he had reviewed all the records (MRIs and test results). He didn't have any news, just that "I don't think you have MS and you should go back to your PCP/General Neuro."

Ironically I went to my original MS Specialist two weeks later who said "Well we haven't heard from the Boston doc yet (duh... Maybe you would have if you had sent the records on time???), but I don't think you have MS either. However, you continue to have these "systemic symptoms" so I think you should follow up with your PCP and General Neuro. Don't worry we'll continue to follow you, so make ana appointment in 6 months??" Are you scratching your head yet? So now I feel like that piece of the puzzle that doesn't fit anywhere??

So fast forward to yesterday... My friends have been encouraging me to see a doctor who they say has helped them quite a bit. He is a general practitioner (PCP), but also focuses on "Functional Medicine." I'm always skeptical about different types of medical specialties (AKA Alternative Medicine)" and living here in Western Mass there is a lot of it and its not all ligit, but after all that I've been through I finally decided that talking to this doctor might be worth it. Finally getting to this doctor was a trip too. I had to reschedule twice. Once because my kids were sick and the other was because my car died on the way. Additionally, we were a 1/2hr late yesterday because the directions to their new office were wrong.

As it turns out "Functional Medicine" is far from "Alternative Medicine." The doctor explained that Functional Medicine focuses on what it is that is making the body do what it is doing. Sort of trying to look at the whole picture. Not just one area. This doctor spent an hour and a half mostly listening. He did do a quick physical exam and ordered about 400.00$ worth of lab work (most of it is covered by my insurance ) He referred me to a nutritionist in his office and new neuro.

I guess the crux of it is that I finally felt validated by a doctor who is willing to listen and not make you feel like its all in your head. Oh and did I mention that this is the first appointment (of many) that I've brought my wife along with me and she did not cry. He said he would take me on as a patient if I wanted to. I have no problem firing my current PCP. The only problem being is that he is 45 min away, but I'm thinking it might be worth it.

So right now I'm in more "limbo" than I feel I've ever been, but at least I'm optimistic. That island looks really inviting right now. Except I'm going to be in shade today and hope this migraine goes away.
-jsox