Confused & Happy

Not sure what to think. I got a call from my Dr's office today and my MRI was normal (I figured it would be) but now confused because I have no idea what is going on. I know my Dr. is going to totally dismiss MS now which I guess is fine, but what in the world could be causing all these issues. Which is what I'm going to ask her. No MS that's cool and great and I'm happy. BUT then what is it? She better not even think of ignoring my symptoms and think all is fine just because my MRI is normal. I sure ain't normal lol So she better get her thinking cap on :)

[rendean]

Good news if you don't have MS!  There are many MS mimics that could be causing your symptoms. In fact, there is a Health Page devoted to this:

http://www.medhelp.org/health_pages/Multiple-Sclerosis/MS-Mimics---Part-I/show/375?cid=36

If your doctor has not tested you to rule out all the other mimics, insist on it. Your sttitude tells me you will have no problem doing this : )

Ren

[tripnstumble]

I've been tested for just about everything so far such as Lupus, Lymes, B12, Sjogrens, RA etc. everything in the past year has been neg. only thing they have found in my blood was a high sed-rate. Other then that it's all been normal. Most of these tests have been run at least 2 times, some even 3. Lymes & B12 were only ran once though. As much as I hate getting my blood taken and still black and blue like crazy from the last time I think I'm going to ask her to check all these again. Ya never know...

[kerrtelli]

Goof luck.  I am happy for you and sad at the same time.
I understand becuse I have an MRI full of lesion and they say no ms so I am on the same road.

Kerri

[tripnstumble]

Long story short is my husband is so sure it's fibromyalgia (he thinks he's a Dr. lol) And it very well just might be, I haven't a clue. I do know that when I was 30 I had a hysterectomy due to cramps that no one could do anything for, no medication worked, I would get high fevers and just sleep the week away. I had 3 kids to take care of and it just wasn't possible. This  had went on for 10yrs until my Dr. finally did agree to the hysterectomy. And there was nothing abnormal found during the surgery either. He thought possibly endometriosis but all was fine. Either way I'm glad he did it because that is at least one painful issue gone :) As sad as it sounds I did tell him if he didn't do something I'd be forced to do something drastic haha (see maybe I am crazy lol)

Either way, I was seeing a Rheumatologist at Penn State Hershey Medical Center (2hr drive just to get there one way ugh) He suspected Fibro. as well but then stated I didn't have enough tender spots or whatever their called. But did want me to try Lyrica just to see if it would help me. None the less my lovely ins. refused to pay for it because I was not diagnosed with Fibro. and to try Neurontin. I was on Neurontin for 2yrs with no real help. At that point I had given up and didn't go back to any Dr. until this one I'm seeing now.

I have no idea I just know this Dr isn't going to ignore whatever is going on lol I don't care if she wants more blood, spinal mri (which is what my chiropractor wants done). I don't care, but something... Something is going on and it's time to figure it out that's what I know!

Also, I don't know what the MRI report actually says. I just know they said normal. When I go on Friday I'm going to ask them for a copy of the report just to see for myself what it says.

[grannyhotwheels]

It's such a hard road when trying to figure out what's wrong... One of the worst times of my life... I'm sure most everyone will agree... Don't give up and yes, insist she find out what's wrong or send you somewhere that will... I wish you the best and just because you don't know what it is please stay here with us... Just because the MRI is clear still doesn't rule out MS... Keep us posted...

I'll be praying,
Carol

[tripnstumble]

Thanks Carol, I'm here for awhile yet :) At least until they figure out what's going on for sure. I still would like them to do the neck and spine MRI. If my ins. will approve it anyhow. Not that I want another MRI yuck but I rather know nothing is there then not knowing. I'm also hoping she will send me off to a neurologist who can also possibly look at the scans. For all I know this radiologist is a bad one? Who knows. I sure don't, I don't know much of anything anymore other then I'm sick of feeling like I do lol That I am sure of  :)

[twopack]

Hi TnS.  I think I keep catching pieces of your story and then losing track of you before I take the time to respond.  It almost happened again today.  The details you added here about surgery and fevers have my memory banks short circuiting on overdrive.

Do you ever hit on long-shot bets?  I have a few questions that could prove interesting BUT don't expect tooooo much.  This is a (rare) longshot idea.

Did those fevers have a pattern?  How high were they?  Do you still get them?
How high is your sed rate?
Have you ever had a ferritin level done (it's a blood test related to iron stores)?
Have you ever noticed a rash (especially one that shows up with the fever) that is made up of many small pink to red areas that do NOT itch?
Every have liver function blood tests done?

OK, that's enough for now.  It does seem a rheumy will end up being the one who can pull this all together.  Any chance you will be able to see another good one anytime soon?  (I've got to go.  I typed that last sentence three times and still didn't make much progress.  I'll be around tomorrow to check in on you and check out your answers in general.

Mary

[Karen99]

I absolutely love your attitude!

"So she better get her thinking cap on"

[tripnstumble]

Don't ya hate when you lose messages? lol I do it all the time and with my cognitive issues it's a real task to find em again :) OR let alone why I wanted to respond.

As for my fevers during my menstrual cycle I wouldn't say they had any type of pattern, they seemed to just always be there while I went through the weekly ordeal. They got to from what I remember 103-104 which was what I assumed was really kicking me down, besides the god awful pain. Back then I don't know what my sed rate was if anything. Now (8yrs post hysto) it has been as high as 66. When I take prednisone it goes down. I always complain I feel like I have a fever but I check it and it's fine. My head gets so fricken hot and burning feeling. My hands and feet get this same feeling but no where else. And nope no rashes at all, not then and not now.

I'm not really sure on all the blood tests that were done other then a lot. I am sure if my new Dr. has my records from my rheum. I can get copies.

Ya know sitting here made me think of something. I was for the most part fine until I had a tubal done at the age of 21 (now almost 40) Within a few months I started with the cramps etc. and told them I wanted the stupid hulka clips which was all they would use at my age. And it just seemed I had gone down hill from there. My Dr. told me that no I can't be rejecting them they were titanium. I know I said I don't care if their made of moon material my body doesn't like them. But, none the less I was stuck with them. When I did have my hyst. they did remove one overy. I do not know if they removed the other clip or not. And who knows maybe it has nothing to do with anything and just a coincidence?

Also, I was diagnosed about 15yrs ago with Tarsal Tunnel Syndrome. I do wonder about that diagnosis because I just do not have typical symptoms.

WHOOOO knows lol And yes she best get her thinking cap on cause I'm sick of tests, done of feeling like this and she gotta do something :)

[tripnstumble]

By the way I am almost 100% sure my liver has been checked along with iron etc. But I'd have to get my records to know for sure what was all tested in the past 2yrs. I know it has been much, MUCH more then the typical blood work up. My left arm has always been my main blood taker arm lol NOW that arm is full of scar tissue and of no use anymore :( Last two times they tried none of the phlebotomists were able to get anything at all.

I have read that a titanium allergy can cause Chronic Fatigue Syndrome AND MS!!! Do you know how pissed off I'd be if these stupid titanium clips would be the cause of all these years of hell after telling them I wanted them out. OMG I think I would have to go to that Drs office and literally punch him right in the face for ignoring me.  I still get pain when I ovulate in the overy I have left. The pain ugh it gets bad. I feel warm but haven't taken my temp. I've just been this way for so darn long I think of it as "normal" anymore. Hopefully I don't feel it for awhile lol BUT when I do I'll be sure to take my temp. :)

[twopack]

I sent a pm with some additional info but it doesn't sound like a jackpot hit.

Good luck today.  Please do rejoice in a normal looking brain.  We all understand that doesn't mean your BODY feels good about it.

ABSOLUTELY go with your plan to set up a new diagnostic or treatment agenda.  If Prednisone has helped in the past, you may be able to convince a doc to do a trial (more than a dose pack) and evaluate your response.

All too often we have to be satisfied with leaving and picking up a breadcrumb trail of clues over a long journey.  It is easy to forget how many destinations are possible.  I hope you are heard at your appointment today.  Let us know how it goes.

Mary