[carbreezy]

Hi ... I am New here. Very Much in Shock. Had MRI with/without Contrast.
After reading the report and looking at the images Neuro Dr says he feels certain he see's a Demyelination process. I looked at the images with him... I was in shock to see the White Spots on my Brain. Over 4 of them.

For years i have had what i called Flare Up's of ( on and off )
1. Extreme Fatigue
2. Weakness
3. Pain
...........I have always believed this was due to my thyroid - I also have Hashimoto's ... I have also always had high Inflammation in my body.
(ex: Sed rate - CRP - CH100 )...well after this MRI - Looks like i was WRONG...
and Now Neuro Dr wants to do a Spinal Tap. I am Scared... Could this really be MS..???

Lately My Symptoms was worse... Mental Decline, Legs are feeling weird like they are falling asleep - tingling, ... if they find it to be MS...and I start Meds will this Leg stuff stop... The tingling is making me crazy... It;s like a constant reminder i MIGHT HAVE MS,,...???
Will Meds take away symptoms..??
I am Confused...
PS. So Far i have No Optic involvement ...?
Thank You for any response...

[Debbie D]

So many disorders/diseases have similar symptoms as MS...it's a process of elimination.
Sounds as if your doc is doing the right things to eliminate and get as much info as possible...
keep a symptom journal with dates/onset of sxs & dissipation. Get rest, exercise, eat good foods, and trust that you will get the answers you need.

Keep us up to date on what you find out, and know you're not alone...

[doydie]

We will go along with you on this journey carbeezy. I love your name. Yes, it could be MS but as far as the medicine goes it works wonderful on some people and not so in others. I have been on Avonex since 1997 and no increase in my brain MRI. Sometimes my neuro wonders if it is really MS since I have never had an increase but I have had a few flare ups since 1997 that Solu Medrol or IV cortisone, have taken care of. There are different degrees of MS, each one has its distinctive degrees of progression. Sounds like they are doing the right testing though. MS is a disease that is diagnosed by ruling out other things. Debbie is right, keep a journal. There are actually 2 different kinds of journals you can keep. One is for you, it's your feelings about what is going on, how you feel as a family member, as a woman, anything you ant to put in it. It can be private or you can share it. The other journal is for your doctor. This one would be what is going on, what you are doing when each symptom comes on. Heat can bring a lot of it on and then cooling down can make it go away. Were emotions going on when a symptom came on. stress can be a killer. No I didn't mean a real killer. And join us here on a regular basis. We have another forum connected with this one called 'the stumble inn. There we talk about what happens in our lives. Because we live with MS. So it is with us in everything we do. We talk about anything and everything over there. This one is mainly MS disease related.

[carbreezy]

.. Thank You Debbie D. and Doydie.. Your comments REALLY helped me.!

..... My next questions is Have you both had the Spinal tap...(probably a Silly Question) ..!! was it done at a hospital - IV sedation ?

I read that they are checking for "O-Bands" ... Can They test for MORE diseases besides MS....?

Also is there a Need to ever Re-Check the Spinal Fluid...? will they ever change ?

Thank you All Again..!!!

[doydie]

I can't answer all of your questions but maybe a few. Yes I have had a spinal tap. Actually I have had 2 but the first one was completely unrelated to MS and well before any problems with MS. My neuro had me get an appointment with the xray department for a radiologist to do it under flouroscopy. That way he could watch it as he put the needle in. I had no trouble at all and had no sedation. But I am an RN and find things like an LP very interesting and I don't think I would have wanted sedation.

Yes, they check for O bands and many other things. MS is usually diagnosed by excluding other problems. There are a lot of opinions about LPs here on this forum, some have horrid reports about them others say it was a 'walk in the park'. Mine is the latter. Big help is that you drink a lot of fluids so your body can replace the spinal fluid that ahs been removed. Also if you do have problems with a spinal headache it is very important to your sanity to let your doctor know right away so that they can help.

I hope this helps. Good luck

[KittyLady]

As doydie said, some have good experiences and some have bad. I had bad, both times. First time was old fashioned way, hunt and peck so to speak, and my recent one was the flouro thingy. I have had 2 LP's, 20yrs apart. So, to answer if it can change, mine did over the years with the first being negative and the second to being positive. My first neuro I had out here was skeptical if I truely had MS and after the LP he panicked and said he cant take care of an MS patient properly and sent me to a MS specialist. I will be eternally greatful to that neuro as he sent me to a great specialist. Best advice on all this, stay calm, dont panic. Hard to do I know, but its the best thing to do for you right now. Take it in stride and cross the bridges as you get to them. Like Debbie said, so many diseases mimic MS, and its a process of elimination. Breathe, and know your among friends here who really do know what your going thru.

[SallyC]

Welcome CB..

[Snoopy]

Hello carbreezy,

There are many conditions that are in the category of Demyelination, not just MS . This link will give you an idea of some of them:
http://spinwarp.ucsd.edu/neuroweb/Text/br-840.htm

I read that they are checking for "O-Bands" ... Can They test for MORE diseases besides MS....?

Yes, a Lumbar puncture is used in the diagnostic process for MS as well as other conditions.

Also is there a Need to ever Re-Check the Spinal Fluid...? will they ever change ?

My Lumbar Puncture(LP) was positive (o-bands) when I was diagnosed. My neuro told me once the LP shows o-bands they will always be there. I have no desire to have another LP to see if it is true or not

[Debbie D]

I did have a lumbar puncture...showed no bands. I loaded up on fluids beforehand, and afterwards laid on my back and drank hypercaffeinated drinks all day to prevent the headache that can come after a puncture.

During the procedure, I did my deep breathing from labor/delivery...it helped, since the doc had some difficulty getting in. But it ended up not being very painful, just uncomfortable. I am so grateful for sites like this that gave me information about what to do afterwards...

[carbreezy]

...Thank You to EACH one who responded to my questions / concerns .
it seems to be a waiting game now - getting the appointments lined up.
.. I don't see the Neuro doc again until Aug. 20th - then he will give me the script to get the Spinal... then wait for those results...!

...I was just doing some reading about IV chelation therapy... I don't know if i believe in stuff like that...? Just seems like there is SOOOOOoo Much information on MS... !
I understand i need to change my diet...and start to exercise no matter what they find it to be.