Third MRI results~
 

Hi,
I just had my fourth (or fifth ?) visit with the Nuero and got the results of the MRI on my spine.No lesions found.I should be relieved but am still in Limboland with my "probable MS " diagosis.
She has referred me to a MS specialist to see what he has to say and to run the evoked potential electrical tests. She did correct me on one thing,I thought I had three or 4 lesions and she counted 11 today. She also finally sent me home with all the information packets dealing with MS.
A recap:
First MRI-found the lesions but not where she could make a 100% diagnosis
Second MRI_ the lesions are clearer.
LP- Elevated IGG index but no bands.Elevated Protein levels
Third MRI of spine ~ clear.

I have vertigo, which comes and goes. Internal vibration sensation/internal tremors what ever you want to call it. Pins and needles as well as numbing in legs,arms,toes,hands,mouth and private parts. 2 episodes recently of very visible shaking both hands and legs. Cramping in my feet seperating my toes..The fatigue and the emotional stress is starting to wear on me. I seem to have trouble concentrating on work and forget what I'm saying mid sentence or what I'm doing mid task. I just dread the evenings..everything is so much worse at night. It's like there is an internal alarm clock that says okay 7 pm , time to tremor and vibrate ! ARGHHH

You're up to date. I just cried like a baby. DH is on the other side of the state living and working,I'm here at home trying to sell this house and get all the appointments in before we switch insurance companies and homes. Just so much to deal with as I'm sure you all know.
Thanks for the ear ~

11 lesions and they can't give you a definite diagnosis?! I'm sorry you did not get any answers today. You are right, it should be a relife that none were found on your spine, but then it still leaves so many questions unanswered :hug:

I'm probable MS too, and I have greater than 9 lesions in my brain and 2 lesions in my spine(which I hate). My first flare-up was ON in Nov of 06 and you need 2 flare-ups for a definate dx's,my neuro said that I should start on a DMD so I did been on Copaxone for 3 months now.Keeping my fingers crossed that it's working for me. Take care of yourself Theresa.

Nope.She said she would rather the MS specialist make the call. It's crazy, I don't want to have MS but I am so tired of feeling icky and am ready to get some kind of treatment started.She gave me the MS packets today and there was information on a holistic approach that I am going to get started on untill the appt with MS specialist.

This is such a hard path...I'm sorry the debate continues. Sending hugs and holistic thoughts your way! Hope you and DH can get together soon!

thav, I am glad you're going to an MS specialist.

Kristi, I was dxed solely on the basis of ON and brain lesions to support an MS dx. I never had an LP and passed every other test. No apparent "flares" other than what I was going through when I had ON and although there were things in my past that in retrospect definitely could have been MS related, there was/is no way to prove that beyond a shadow of a doubt.

In terms of a dx, it really can depend on the doctor and be somewhat subjective when it comes to history.

thav, can you tell me what was contained in the holistic protocol the doctor gave you?

goodness sake,I cant believe that with 11 lesions,and they couldnt dx u.
what else do they want.
I was dx with a flare,after only 6 months in possible ms.
Good luck to u,
hugs,
aly

She has advised me to start taking an Omega 6 (evening primrose oil),B-1 in addition to the b-complex and Omega 3's. One of my friends here locally is a massage therapist and I'm going to give her a call. Other than that I take opiates for pain and she gave me something if anxiety gets the best of me.
We had a discussion about the different meds ( Copaxane,Rebif etc...) and is hesitant to get me started on a treatment plan with those untill I get to the MS specialist.
I really feel in the bottom of my heart that this started back in 1998 with the vertigo and a migraine that lasted for months,along with muscle spasms. I felt completely fatigued but then found I had Graves disease so I chalked everything up to that.
Quick follow up question,(maybe I should ask in a seperate thread) What do you know about the effects of diet soda and MS? Someone told me that it can make MS symptoms worse. Thoughts?

About the diet Coke and MS I heard the same thing that it in Not good for people with MS so I have cut down big time And I love diet coke that's the only pop I ever drank. I'm drinking more water now.

Thanks, thav. I take EPO as well. With Omega 9s, you do have to be careful though not to take too much. It's the ratio to Omega 3s (actually, the 3-6-9 ratio) that is important to keep the body in balance. Just in general, I was happy to find a vitamin board here -- it seems very good.

I take other things besides these but if you are open to supplements, I would also highly recommend curcumin, which is the active ingredient in the herb turmeric. There are studies documenting its anti-inflammatory effect, albeit small (as with most herbs and vitamins -- not large samples because of funding). The brand I take is called "Turmeric Force".

Regarding aspartame, you will find mixed thoughts on the subject and I think if you posted the question here and also on the vitamins board, you'd get mixed responses. Not specifically in regard to MS but just generally speaking, I personally believe aspartame is a neurotoxin.

I hope the MS specialist appointment is not far away. It seems very clear that you have MS and will be dx as soon as you see a specialist (unless the lesions are another "type").

Take this time to read up, and make some decisions.

Good luck,

Cherie

Thanks Cherie. They said they'd be calling in the next 10 days but I'm going to call myself and get this ball rolling. Are you in BC or Washington State? I live in Vancouver but here in the states.

Good plan.

I am in Canada, just over the border from you. I love shopping down there and always pick up some Mountain Dew with caffeine (ours doesn't have it). :)

Cherie

The good news is
 

you are getting into see an MS Specialist. Can I ask why they haven't sent you to one before especially with the number of lesions you have?

An MS Specialist will be much more sensitive to viewing your sx in relation to your test results. I do want to share one thing with you though: Most MS doc's don't use Evoked Potential (unless it is Visual EVP) to diagnose MS. You may want to discuss this with him or her. My personal rule of thumb on tests have become: If you (the doc) cannot give me a GOOD reason for why I need it then I don't want to spend the money on it. Just my humble opinion.

To tell you the truth I'm not sure why they haven't sent me to the MS DR. before now. I do have Kaiser,not sure if that has anything to do with anything.Although I'm hoping they will run all the tests they are going to before I make the switch to the Trust insurance. Kaiser tests for me including MRI's etc.. are only $10 right now. Once I switch over to the other insurance I will have to pay 20%.I only have 3 months left with Kaiser so I hope they really get this rolling before it runs out. Thank goodness DH has the new company picking up our Cobra or there would be a 2 month lapse between insurance. The other blessing is that it is the same union but different locals,so there will be no pre existing condition wait time. That's the bright side here.
I'm soooooo very glad that I can come here for the support with my husband living so far away right now. I have to believe that the heavenly father is in charge,this house isn't selling because I need to be here where Kaiser is,(no Kaiser where we are moving). It is so tough without my DH.My wonderful daughter has moved home and is taking wonderful care of mommy. Thank you Jesus for daughters and my new friends at NT :grouphug:!

Ahhh.Beautiful BC ! I just love the Northwest , born and raised. The Columbia River Gorge here is so breath taking and I don't care how many times I drive down I-84 it just amazes me.

Good luck!! I wouldn't walk out of there without a solid answer on "what caused those lesions then?", IF they try to give you the run-around. I really don't think they will though. ;)

Cherie

Here's wishing you the best of luck with your appt. Make a list of your ???s so that you have them all answered. Let us know how it goes.:Good-Luck:

that's great that your appt is so quick.

i hope you get the answers you need. better to know for sure.
when i was being dx'd i knew about possible MS.
and when i found out i was still shocked. it was a blow.

i hope your appt goes well.
please keep us posted.

Hello and hope you get your answers as soon as you can.

Has the present MD taken all the lab tests? That was the 1st thing the MS doc did... to rule out other causes. My new Rheumy said brain lesions are much more common and the symptoms often overlap. So I dont want you to get your hopes up only to have the new doc run more tests and take their time diagnosing you.

Just know that you are not alone and that we care how you are doing.

Warmly, Jan

Hi Jan, :Wave-Hello:
Yes the labs were the first thing they did. No Lupus,Lyme etc...My nuero went right down the line of protocol. Had the LP, 3 MRI's and " a partridge in a pear tree" :D (forgive me I have to keep my sense of humor)
Thank you so much for you warm thoughts they are certainly appreciated.