HI I'M NEW.......IN LIMBO

[lavenderteawithme_33]

HI

THIS IS MY SECOND POST TOTAL. I HAVE BEEN IMPRSSED ON ALL THE INFO. ON THIS SITE.

HAVE MANY MS SX AND HAD MANY TESTS DONE IN THE PAST..ALL NORMAL . NO LP DONE YET.

SX : NUMBNESS AND TINGLES LEFT LEG AND HANDS..EYE PAIN LEFT -EYE NOT BEING CLEAR AND PUPILS DIALATED MOVEMENT WHENEVER .....BLADDER.-SPASMS --- IC DIAGNOSIS THIS WEEK A BLADER BIOPSY .....BOWEL--IBS & spasms in rectum along with muscle and nerves not communicating( had that balloon test done and faled it) .....PAIN....DEPRESSION...ANXIETY ...COGNITIVE .

I HAVE HAD FIBROMYALGIA DIAGNOSED IN 2007.

I GO BACK TO NERO DR NEXT MONTH. TO TALK TO HIM OF MY NEW BOWEL & BLADDER ISSUES . IT IS HARD TO BE A SELF ADVOCATE .

CAME TO SITE FOR SUPPORT AND KNOWLEDGE.

JUST WANTED TO SAY THANKS FOR YOU TIME IN READING THIS.

[mjan]

First of all, I am so sorry for all you are enduring. Hang in there, you WILL get an answer, just not sure when or what at this point. As one of my MS neuro's said, "We just don't always have enough sophisticated tools to diagnose sometimes."

You have some serious enough symptoms that need attention and treatment from your neuro. Is your neuro a MS specialist? That helps.

There are many mimics of MS and then there IS MS. I was diagnosed, then undiagnosed, then finally diagnosed. My signs are not as serious as yours. I have more cognitive issues and spasticity. Chronic pain and tingling, but livable I guess.

So know that we'll walk this journey along side you if you want us too. Hang in there and let us know how you are doing.

Hugs, Jan

[lavenderteawithme_33]

Thanks Jan

I do have a ms specialist.

I have been clear from having lupus ...diabetes ....ra.....low vit. D.



I do have like i said....fibromyalgia but my sx definitely are getting away from being fibro. related i think.???

Thank you again

[mjan]

Yes you have more symptoms than just Fibromyalgia. Many docs Diagnose Fibro without a thorough test. I was diagnosed with it.. when it was the MS hug all along.

Oh.. and I love your user name..KEWL!!

Jan

[lavenderteawithme_33]

CAN ANY ONE TELL ME THE DIFFERENCE BETWEEN POSSIBLE ..PROBABLY.......DEFFINATE ....AND THE CIS????? IS THIS CIS THE SAME AS POSSIBLTY? I FIND THIS A BIT CONFUSING . I PLAN TO Ask THIS QUESTION NEXT MONTH TO THE DR....BUT THOUGH I WOULD ASK YOU ALL.

[mjan]

I know the Administrators can be more helpful. But if you look up the McDonald criteria you'll see the criteria. And most important is the Neuro exam, along with MRI. Most neuros also add in the LP.

I know CIS means only 1 lesion. I believe.

Possible is a working diagnosis toward MS, but need to rule out other disorders or mimics.

Probable is fairly certain but needs more time/signs to know for sure.

Now this is just MY viewpoint. I am sure there are more expertise to guide you.

Hang in there. You'll get answers..

Jan

[txlaura]

thinking you should push for LP

my Neuro who is a MS specialist said the antibodies in my spinal fluid from the LP nailed the diagnosis.

I know you posted on my story on the other board. Because my lesions were larger and in the spinal cord itself they had to go one step further to rule in Devic's disease and they did that with a blood test but that also didn't rule it out...

You have a great attitude and yes you have to be your own advocate, especially in the beginning. Ask as nice as you can for the LP

[lavenderteawithme_33]

new and in limboJA

JAN....

THANKS FOR YOUR INPUT AND TIME RESPONDING.

[lavenderteawithme_33]

Yes time for LP

[/LIST]82]my Neuro who is a MS specialist said the antibodies in my spinal fluid from the LP nailed the diagnosis.

I know you posted on my story on the other board. Because my lesions were larger and in the spinal cord itself they had to go one step further to rule in Devic's disease and they did that with a blood test but that also didn't rule it out...

You have a great attitude and yes you have to be your own advocate, especially in the beginning. Ask as nice as you can for the LP

HI.....TXLAURA

THANK YOU SO MUCH FOR YOUR REPLY.

I AGREE IT IS TIME FOR A LP.......I HAVE NEVER HAD ONE . NOT SURE HOW PAINFUL IT IS OR WHAT TO EXPECT.

[mjan]

Hey, I just noticed you are from Wisconsin too!
I live just outside of Milwaukee.

Now I wouldn't rush into getting an LP in case you get diagnosed and they don't need one. But.. if you do have one it doesn't have to be painful. They numb you first with local anesthetic like at the dentist. That stung for a second! I did my "labor" breathing.. in through my nose, out slowly through my mouth, teeth apart so you are not tensed up. Its the TENSING up that makes it hurt.
It never hurt!

So don't rush into anything. Let the Neuro decide if he needs one or not.

Warmly, Jan

[lavenderteawithme_33]

Jan.....

Hi.....you make a good point . I go visit Dr next month unless there is a cancellation before. It will be interesting to see what he has to say
. I will have theLP on my list if he doent bring. it up or orders mri or something . Just want answers.

I live in N.C. WI....NICE TO MEET YOU....GO PACKERS!