Should I Worry or Not?

[jibjen]

Hello,
I have been posting here on various symptoms I have been experiencing but I would like some help/advice in putting some things in perspective for me.  I'm in limbo, (for something, I don't know if it is MS) I had MRI in June 09 w/o contrast which showed 20 foci of T2 and FLAIR hyperintensities in supratentorial wm most predominant in centrum semiovale and subcortical white matter. Report states possible demyelination process. (I had to find out my results on my own) It does state that the distribution is somewhat atypical for MS....(does atypical mean not MS?)  I fought my neuro for more tests after he blamed my numbness and tingling from migraine which has been since Aug. My symptoms DO not coicide with any migraines I've had. I have had some no a lot of tremors, mostly and electric shocks down left leg with stiffness in muscles and recently cramping in foot. He did EMG.. while he zapped me on my left leg (side with symptoms) at one pint my right side went jerky...(Is that normal?) he said he would like to do spine MRI but afraid Ins. Co. will not cover ????? Then said he is sending me for Physical Therapy for leg paresthesia...I am confused about PT???? and what about my lesions???? I'm just confused.. Do you have any input for me? He mentioned a while ago he was not ready to do an LP. but has not discussed it since..he keeps looking back at my Brain MRI in his computer but not saying much...He does not know I had got a copy of MRI results.... I am getting very anxious.I understand that if it is MS it can be a long road to diagnosis..

Anything advice you can offer you would be helpful..Everyone has been great on this site!
Be well!
Jib Jen

[jibjen]

Hi deb,

Thanks for your input and concerns.. I did get an eye exam after the MRI in which I was told my vision was actually fine 20/20. they told me to get some reading glasses..the wekest strength would be fine while watching tv, reading or using computer..so I did...not much help there..still bothering me...They also did the test where they put a dye in my eye and take a pic which they said came back fine.They said no diseases...
Be well..Thank You
Jibjen

[Deb61]

I reread your post.  Lupus comes to mind when it comes to the rash during sunbathing.  When lupus attacks the central nervous system, it can be extremely serious--even deadly.  This needs to be screened out as one of the mimics pronto.

Also, optic neuritis is something to get in a tizzy about.  You can be blinded by this.  Ridiculous that he said that.  

Yep, you need to get a second opinion.

[Deb61]

Your neuro doesn't sound like he's actively pursuing what's going on because he's worried more about whether or not your insurance company is going to pay.  Find someone else--preferably an MS specialist.  

You probably do need the spinal MRI and LP.  You need all of the screenings to rule out mimics of MS that can cause brain lesions, including migraines, lyme's disease, and other autoimmune diseases.  

20 lesions indicates that something is going on, and the radiologist thought that it could be demyelinating.  Your neuro should be trying to find out what going on a lot faster and agressively in my opinion.  When you've made the request, he's not indicated that he will or ever will be picking up the pace to figuring out what's going on.  Hopefully, you can find someone else that can help you.

[jibjen]

To Udakus, Alex & Quix

This is pretty much what I have had tests

2007 MRI - because of migraine but wanted to rule out anuresym (dad had anurresym)
have been on Topomax and Amerge
(50mg 2x a day of Topomax) has never been increased.
Amerge as needed
migraines always on left side
June 2009 visit - been having visual broblems with left eye and cognitive issues
(visual issues not with migraines)
cog. issues loss of memory, cant find words, words come out wrong
visual issues my eye was itchy and would blur up
June 2009 had MRI w/o contast (came back with 20 foci of T2 and FLAIR hyperintensities)
July 09 appointment was my follow up from MRI (but never reaad me my results)
I had looked up visual disturbances/blured vision on internet and it brought me to MS sight so I asked him at this appointment could it be optic neuritis? THEN he found my MRI results and said "funny you should say that" Still never read my results. Then said nothing to get in a tizzy about, I'm not ready to do an LP yet.
Let's follow up in 4 months. So on my wy out of the office I got a copy of my results.....
This Brings us to October1 for my follow up
I had listed all the things that had been going on and I no sooner got numb out of my mouth and he said migraine..do you want to stop your meds?  I said no? okay see you in 4 months...if anything comes up call me.
I did call him and demanded more tests and he say me and did an EMG on 10/27/09
he wanted to do spine MRI but thought the Ins.Co would deny.
He is sending me to physical therapy for leg paresthesia.

Current symptoms include:
Since August 2009 my left side has had numbness and tingling with shocks in feet that come and go, I have recently experienced some cramping in my left foot (bottom of foot) which I think is called a spasm but since I can't bend foot up or down, my leg left is stiff in thigh and calve and have difficulty climbing stairs and walkng is tiresome. Every once in awhile my hand will tremor while holding something though this is not to to often, I'm always tired and I get ococassional twitches in hand and leg. I have had pain around my torso tightening but I contribute it to stomach issues...

Past history
Heat seemed to kill me this summer (I love the beach and sun but could not handle it this year, I got a weird rash from sun bathing even with SPF on , difficulty sleeping
Poor sex drive for last year and a half ,Hx. stomcah issues (diarreah and constipation) I have been told I have IBS colonoscopy clear
Hx. of Epp. Barr Viris, Have been told Chronic Fatigue Syndrome.

This is all I can think of...
I'm sorry if I'm confusing...I have a hard time putting this in order.
Jib

[Udkas]

Jibjen - I would get a second opinion.  I think it is good to know what your Dr is thinking.  

Alex- I get the tingling and numbness and slight headache but my numbness and tingling comes and goes for days even after the headache is long gone, but then I wonder if it is just the aura without a headache. Hmm still confused.

[HVAC]

Is he doing MRIs every six months? I was tested every six months until I had my LP and it was positive. Is the Neurologist an MS Specialist? If not may be the next step is an MS Specialist.

My numbness from Migraine goes away as soon as the head ache passes. My MS numbness does not.

Alex