Hello! New to the group...

[Twinsmom06]

Hello to all. I'm new to this board and looking for any thoughts on what I have going on right now. Little background...I'm female, 31 years old, mom of 5 year old twins, married for 8 years and am in overall good general health:)

The fact that I even found any lesions is crazy. The test was looking for a pituitary tumor given my very high prolactin levels (whole other issue). No tumor but there were spots in the distance...a full MRI with and w/o contrast was ordered. I didn't even make it out of the hospital parking lot when I slid that CD of the MRI into my laptop. Holy Christmas tree! It really did look like white Christmas lights scattered all over my brain. Literally dozens throughout the periventricular and subcortical white matter of both hemispheres. There was a big one in there too.. 2.1 x 1.2 x 1 cm in size. Nothing else abnormal to be found but my lesion load was scary enough.

My PCP sent me to a neurologist who did the usual neuro tests, reviewed my scans and basically said it looks like MS so lets just go for it and have the LP done to confirm...no beating around the bush or putting your through other tests. I liked that attitude and I went for it


About 2 weeks later I landed in the ER with very odd feeling in my right hand...pins and needles of a sort. Nothing more but the next morning my left hand had a Novocain type feeling. I could feel things, pick small things up but odd! Over the next two hours the cold Novocain feeling moved up my are, to my neck, up into my face, and across my left chest and back...but only the left side. I felt like I could draw a perfect line down the center of my body to show where the feeling stopped. Then at the ER they were taking my BP and the cuff made my arm feel like it was on FIRE. I even asked the nurse to check it, she did and even had me feel it. It was room temperature...not even warm...what the heck?!?!?! Nothing else was off with blood work. So what the heck was that?

On the 20th of October I got the LP...passed out. 2 days later needed a blood patch...passed out. I'm no sissy either so this was a little surprising to me. NEGATIVE...the LP came back negative for bands. My protein was within normal range but on the high end of normal. Nothing really to report other then that.

Neuro is still leaning toward MS and was willing to start me on DMDs giving the clinically isolated issue that landed me in the ER and that my MRI shows some "typical" lesions found in MS and the fact that just about everything else on the planet has been ruled out. But I wanted to wait and do another MRI to have more proof. He was okay with it.

Also, about a month before all this testing for MS started happening I went to the PCP with a bout of vertigo. Lasted about a day and a half is all...I just chalked it up to sinus issues or something. Now I wonder if this is related to a possible diagnosis.

I had a VEP and AEP test done about a month ago and a follow-up comparison MRI done about 2 weeks ago. It seems pretty clear to me that I have new lesions based on the CD but I have so many lesions it can be hard to tell. I have my follow-up appointment on this Saturday (February 11th, 2012) Ugh...I'm a wreck waiting. I just want an answer!

I have been on the MS forum for some time and someone mentioned the "limboland" forum! I'm so happy to find you all!

Thanks!
Kim
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[MrsAristotle]

Good luck today thinking of you.xxxx Mariax

[jibjen]

Hello,

welcome! I am glad u found this group. It is wonderful. I am actually alot like you. I have 20 lesions now in my brain and doc says my MS seems to be stable, no spine lesions to show for...I am discussing DMD to avoid further damage.

I had an LP but the hospital screwed up so no result there except NO LYME and have had everything else ruled out.

I did run into a snag as doc checked Vitamin D and I was severly low, 10 so before I start my DMD he wants to get it back up so I am on prescription VD.

I also have TN, nuumbness and spasms in left hand and fatigue like a bus hit me..I am on meds for spasms and that is great but thumb goes numbe every once and a while...

Hang in there. you will get through this. Your doc sounds awesome. I wasted 3 years with a doc that did not take me seriously and got a second opinion and boy am I glad I did. I have not been with my new doc for a year yet and he has been amazing!

Jibs

[TheLightSeeker]

Hey Kim,
I can imagine what you're going through.
For some reason I feel inclined to mention that
in "real" terms tomorrow will make a very small difference.
What will make the significant difference in your life is how
you react to the news or lack of and what YOU decide to do.
Because, if you think about it,
between dx, probable dx and no dx,it is very marginal.
A lot of technical stuff and findings and results that are obviously not so clear,otherwise there would have been a determination long ago!
You have , what you have, which is NOT a disease the way it is generally
understood (or misunderstood)! It is a multi-faceted systemic imbalance.
Maybe that's why I never liked medical labels.
And there are a lot of things that can be done.
"There are no incurable diseases, but incurable people." Dr. Bernie Siegel.
I've come across many people that were healed from very serious diseases, when conventional medicine wrote them off.
I'll expand on this another time.

Please do not put all your energy into what happens tomorrow.
Keep us posted and meanwhile cry if you need to. Crying has therapeutic value, as it releases a lot of emotions.
My thoughts are with you during these challenging times in your life.
Blessings to you and your family.
Niko

[Twinsmom06]

Jordan's Mom...I have been following your story for a couple months now. While this all seems very frustrating to me, I can only believe that this has been a pretty horrible journey for you having to watch your child suffer and get no confirmed answers. I do hope the doctors can either figure out what else it is, or confirm MS so your sweet boy can get on some DMDs.

Are they allowed for kids this age? You just hate to see someone so young having symptoms and nothing being done to stop them from getting worse. (((Hugs))) right back at you. You seem to be doing everything in your power to help your son and I hope your hard work pays off soon!

Valerie, LOL...yes, I am wired beyond belief today! I just want to go to sleep so I don't think about it, wake up, get my answers and cry. I say cry because it is a no-win sort of appointment. I either get my confirmation (which *****) or I find that nothing has changed and we are back to not knowing (also *****). So expectations are not very high but I am anxious to see what the good neuro has to say about the last 3 tests.

I am trying to relax...maybe a nice bath and a good book is in order. A glass of wine would help as well:)

Thanks for the well wishes and I will keep you posted!
Kim

[Valkyrie568]

I'll bet you are really wired today, anticipating that doctor appt. tomorrow. I know it is hard to relax with something like this hanging over your head, but whatever you can do today to try to grab hold of your inner peace would be time well spent, a nature walk, immersing yourself in a light-hearted book, whatever it takes.

I basically got an "e-slap" on the MS forum earlier this week for saying I wondered how many people are actually offered the chance to start a DMD at the CIS stage. And that it is frustrating to hear how important early treatment is but be unable to implement it. I don't think these medications are something to take lightly, but neither is permanent damage to the CNS. I have to agree with Maria on this; if I had the opportunity to try to use a DMD to slow or halt whatever is going on, especially with multiple brain lesions, I would at least give it a try.

I hope your appointment goes well tomorrow.

Valerie

[ku111]

Happy you found this too!  I just did also.  I have been on MS forum since December 2010.  Your symptoms sound a lot like my 12 yr old son Jordan.  We have "highly suspected MS".  Lesions on brain and spine, panic protein levels.  Still don't understand what panic proteins means and I have asked but never get a clear answer.  We see Neuro every 3 months and then more if needed.  Haven't made it 3 months yet.  I am really sorry this is all happening.  I watch my son and it breaks my heart.  I hope you get answers soon!  ((hugs))