Just got the call from my neuro's office about my tests...

[Shashi]

And the results are normal - again.

The MRI results showed no acute process or enhancing lesions. However, the nurse said that she's going to have the NP take a look at the MRI, which is standard procedure. She said she always gets the NP or neurologist to look at the MRIs at their level, but of course, my neurologist is out of the country again - probably in Italy, where she seems to spend a lot of time at conferences.

My blood tests were also normal - B12, D, thyroid, all normal.

The results of my VEP aren't in yet. She said she'd let me know as soon as she gets those results. But I'm sure they're normal too. (Though the tech told me that my left eye is borderline. But they'll probably call it normal.)

So, does anyone have any ideas what on earth is wrong with me? Because your guess is as good as mine. I'm not back to square one in the diagnostic process, because I've never left square one. I desperately need answers!

And I just feel like crying!

[Sir-Voor]

I can’t really give any suggestion as to what you may have, but I will say don’t take their word on the results of the test. And get a copy and read the results yourself, luckily my wife is a nurse and had me doing it.

My doctor told me my B12 level was normal, and by reading it myself I found out he was wrong. It varies pre testing place for the one I use below 200 is anemic, (I was 219) with 200-1400 being normal. But my doctor fail to read that long term 200-400 would cause nerve/myelin damage, or something to that affect. I now take B-12 injections and have a new doctor.

[amandarianne28]

I have 1 idea

I'm not sure what your Sx are, but I do have 1 idea that could help.

I had major kidney and bladder infections when I was going thru the Dx process, and was eventually sent to a Urologist. They gave me a Urodynamic test, where you are Cathed and on a talking toilet that measures your bladders reaction to filling and voiding. I learned that I have 3 very common problems that are indicative of MS, Hyper-reflexic Bladder, Neurogenic Bladder and Chronic Cystitis. In order my Bladder spasms, does not void completely so I self cath, and I get chronic infections.

They Urologist told me that had I been in for these tests prior to my Neuro Dx she could have given it to me because added in with other Sx it was enough.

This may or may not help you, and I hope it does. keep your head up and keep us posted.

Amanda

[minivanmama]

Lisa I am so sorry. I was hopeing that you would get some answers.

I know after 4 years that you desperatley want answers. I wish i know what you could do. I feel the same way and i know how you are feeling right now.

If you need to cry then do. I know how hard things are right now and not to have answers makes it worse. Just know you have my sholder to cry on.

I am so sorry and my heart goes out to you. lot of (((((hugs))))) and know that you are in my prayers.

Love
Ava

[mjan]

Oh my dear Shashi.. I know you are sooo frustrated beyond belief.

BUT.. when I had an exacerbation which got ACUTE in the hosp this past March the doc was sure he'd find active lesions on the Cervical spine. NOPE NONE and NO ACTIVE or ENHANCED either BUT there were NEW lesions since last MRI the MONTH before!!

OH Shashi of COURSE you feel like crying.. I am so mad for what you are going through..geez!!

BUT I always get a copy of the written record AND copy of the MRI. I know you have the MRI but did you get the copy of written report? Again I had NO enhanced or active looking lesions in 5 weeks yet there were at least 4 new lesions. Why weren't they active? I was definitely in an exacerbation.

AND maybe one of the reasons your doc is in Italy is that is where the doc Zamboni, I think his name is, that has the CCSVI theory..another thought..

Hon, there WILL BE ANSWERS.. there will be!! So hang in there..again YOU DO HAVE SOMETHING GOING ON AND IT SURE FEELS LIKE MS~!!

Love you lots..HUGS

JAN

[Shashi]

Thanks everyone. I appreciate your support. It's just so hard to feel so horrible and not know why.

Jan, this MRI I have shows at least six non-enhancing "spots" on the T2-FLAIR images that show in two different views and that were NOT on my MRI back in March. I don't know what the significance of that is, but I'm really hoping the NP will see them when she looks at the MRI.

And no, I didn't get the report, just the MRI images themselves, but I have to go out that way Friday when I have the esophageal endoscopy, so I'll see if I can pick up a copy of the report from this MRI and also the one back in March.

I read on my MRI report from last year that they said that I was a 46-year-old female with MS, which is weird because I've never been diagnosed with MS. But I'm wondering if the radiologist, thinking that I do have MS, is only looking for enhancing lesions and ignoring the six that I see as non-contributory to my current condition. In all reality, any lesions, enhancing or not, should be significant and may contribute to a diagnosis. But, what the heck do I know.

[gomer]

Back in Jan 2007, I fell and tore my shoulder. My new famdoc sent me to an ENT. The ENT did a series of tests, VNG, brain MRI and more.

The MRI report read like a text book description of MS. What did my ENT do? simply ignored it and wrote in my record, CNS issue, investigate "if warranted"......

It was a new eye doc in Aug 2009 that opened the MS can of worms due to my diplopia. It was only AFTER I had to get copies for a new neuro that I ever knew anything.

The rest is history, a not too long twisting road thru Limbo and formal Dx this Jan. Not counting over 50 years of MS Sx before all this.

Hang in there, chin UP!

Doc Gomer Doctor of, Been There, Done That.