Bon,

First off, i'm sorry that you're not getting any real answers for the time being. I can definitely relate as I'm in the same boat. It is so beyond frustrating to know that there is *something* going on, but not knowing what it is. The one positive thing is that in the process of finding what's going on, you have eliminated things and hopefully will continue to do so.

Have you seen a rheumatologist yet? Perhaps they might be able to shed some light, or see something else that someone else hasn't picked up on.

This is much easier said than done, but try to just make some time for yourself, and de-stress. Don't go doubting yourself because something hasn't shown up just yet- unfortunately this whole limbo land can take a while for some of us, and I understand patience can wear so thin. Keep trying to search for answers, as you are the only one who truly knows how YOU feel.

Know that I am thinking of you, and sending best wishes your way. If I can do anything to help just let me know.

Thank you so much! I have an appointment with my GP on Monday to get a refferal to a Rheumatologist, pain specialist and a podiatrist. Between them all, maybe they will find something. (((hugs)))

Sorry you don't have any answers yet Bon ((hugs))

Does this mean they are not doing the rest of that MRI you had to reschedule?

I understand the frustration of all the Dr appts, but I guess everything takes time to assess. Don't stress over them.

Hope you don't have to wait too long to see a Rheumatologist
((hugs))

Sorry to hear..But you can always go get a second opion

Cathy

Tallie, yes I made an appointment for the thoracic MRI on the 19th. It's just so hard to work and make all these appointiments and all the other stuff you have to do in life, I live alone with my two pugs, thank god for them, they make me so happy. (((hugs)))

Hi Bon,

Yes, it is all so frustrating and hopping from one appointment to the next wears you down too. I've been in this cycle since August 2011 and I totally understand how you feel. If you need to step back for a few days or weeks then do it.... but don't let it go for too long.

(((hugs)))
Lisa

Thanks Lisa, I wish I could step away from my job for a few weeks until I get all this sorted out, but I can't afford to. (((hugs)))

No advice to offer you, just sending positive thoughts your way. Hang in there!

Thanks Choppel, (((hugs)))

I just don't understand the diagnosis of this disease (or any disease for that matter!). You have four brain lesions and it's not MS. I have one and it's probably MS. It's so subjective. And every neuro is different. Even different on different days. My first neuro saw me and said he was 100% sure I did not have MS. Three days later he was 90% sure I DID have MS. Two weeks after that, it's a toss up, it may or may not be MS.

I hope the rheumatologist will be able to help you. Somewhere, somehow, there has to be an answer for all of us undiagnosed people. Keep advocating for yourself! (((HUGS)))

Thanks Jessica, she said that my lesions were not in the right spot and they didnt have dawson fingers? I don't know, maybe the thoracic MRI will show something.. I know this sounds crazy, but sometimes I just wish I can be checked into the hospital and have every test known to man done before I leave and maybe then they will come up with something lol. Soooo annoying. (((hugs))))

It's so weird though. The whole thing. I have one 3mm lesion. It is not even in the area of my brain (brainstem) that was causing my very obvious and visible symptoms. I don't know how your neuro can rule it out because your lesions don't have the "Dawson's fingers." Anyway....

What state do you live in? I'm seeing another neurologist in 6 days and if he can't tell me what is going on then I'm on way to the Mayo clinic for an evaluation on December 6th. They are basically going to do what you said, keep me there and run tests until they figure out what is going on. Maybe you should look into big name/teaching hospitals in your general area and consider a visit to one. It's worth a try???

Hello!

I just found this explaination of Dawson's Fingers...

http://multiple-sclerosis-research.blogspot.com/2011/10/ms-pathology-dawsons-fingers.html

I agree this is all very confusing and frustrating...I too am stuck in Limbo-Land...just keep advocating for yourself and get as many opinions as you can and rule out other reasons for your symptoms. I am having new MRIs this afternoon and have decided to go for a third opinion if these MRIs do not show anything definitive. I have/had one lesion (was fairly big) on my spinal cord that after a year continues to give me problems. There's a reason why I (we) constantly feel like shit and we all deserve to have as many answers as we can...

BIG Smiles :D

Jamie

I've been in the same boat as you ladies especially Jessica.. I have several scattered 2mm lesions and was told they aren't in places that should cause symptoms... but was finally DX. Although now, I've had several relapses and no new lesions show on spine ...(and he hasn't told me if what we see on brain are old or new) Spine is clear.... and now my Neuro sounds wishy washy ??? Very frustrated but I will continue to take my MS treatment ! Everything else has been ruled out and I don't think they know much of anything about this disease- some neuros would say my tiny speckles cause lots of trouble others like Bon saw would say NOT MS--- so what are we to think and do??? They don't know and thats the only answer ! I was told "I'm a mystery!" Bon, stay strong and pray---

Bon, Hope it all goes well on the 19th then.

We have to put so much faith in all these medical professionals getting it right. Seems like the criteria for a dx is different in different areas. Personally I find it all confusing.

I live alone as well (though I dont have any pets for company. I feel the strain of all these appts as well, its so difficult. I have a mortgage to pay and im hardly earning enough at the moment to cover everything. I actually have to increase my hours at work again, even though I know I will struggle. Also having to use up my holiday leave to cover my appts as where I work I can only have 1 day leave for hospital appt. Not really ideal.

((hugs))