seizures, stroke, ms???

[jan]

Dear Dr.,

My history: mild valvular disease, inappropriate sinus tachy, neurocardiogenic reflex, Factor V Leiden, brain lesion (stroke or MS), rt sided paresthesia, epilepsy due to lesion (SP's and CP's, controlled)

MRI (bits because of ltd space)-glob.area of white matter abnormality adjacent to corpus callosum,involv'g med.centrum semiovale.,differential isolated deep white matter ischemic event/remote etiol, vasculitis or demylinat'g process due to single event or recurrent etiology is indeterminate. Follow up in 3-6 mos is advised or sooner if patient's clinical symptoms warrant.

Every dr. I have been sent to has said stroke (2 defin.) or MS, except my current neuro.  He said the lesion is where you wouldn't think either, but he hasn't given an opinion, either.

I am wondering about the MRI's and the parasthesia.  My MRI hasn't chg'd in 3 yrs (1st MRI 9/98)! One said little chg, which I believe can mean "no" chg.  The last report said another MRI in 3 -6 mos, sooner if symptoms warrant.  Why are they continuing these MRI's?  

First episode of paresthesia came after CP seiz(3/01)and lasted for months,then left suddenly and completely. 2nd episode came back as if it never left and now has a baseline, with times that it's worse. Why? If it's a stroke why do symptoms come and go? Or is it from seizure activity (if so, why hasn't it stopped)? Is MS really a possibility?

(I am having a TEE to see if my heart could've caused a stroke, since that is what some of the drs. have suggested. I have MRI's on avg. every 6 months).

Thank you for your time.

[CCF-Neuro-M.D.-JT]

Extremely difficult to make an accurate diagnosis without personally seeing your MRIs and examining you.  WHat I can say is that the description of the report does sound like it could represent MS or strokes among a number of other less common diseases such as sarcoids, lyme, etc...  Another point is that whenever we see a lesion involving a structure in the brain called the corpus callosum, MS is a very big consideration.  For a more definitive evaluation, a spinal tap should be considered to look for MS as well as evoked potentials.  ALthough I certainly can't speak for your doctors, I'm guessing that they keep getting the serial MRIs to look for progression of disease, new lesions, or something that will give them a clue as to what they could represent. Finally, as for your intermittent paresthesias, it would be very unlikely that they represented seizures if they stayed around for months.  MS is still a possiblity, but stroke can come and get better also. Talk to your docs about getting a spinal tap. Good luck.

[jan]

When I mentioned MRI hadn't chg'd in 3 yrs, the 1st MRI was in '98 and the 2nd was in '01 (since then I have been having MRI's reg).

I like to mention that my neuro exam isn't always norm,either. At one pt I had tight heel cord (for quite some time) and last 2 visits I have trouble with the tip of finger to nose and to his finger, reflexes aren't normal all the time, either.  Last time it looked like a 3 Stooge act.

I don't know really what to tell you.

Thank you.

[tlpounds]

I'm not a Dr., but have been recently diagnosed with MS.  From what I have learned, involvement with the corpus collosum and white matter disease are strongly indicative of MS.  Have you had a spinal tap yet?  Have they done other tests to rule out other diseases such as Lupus, Lyme, etc.?  Wait for whatever the Dr. says, but I would go to a Dr. that is willing to run whatever tests necessary.  If it is MS, early treatment is the best thing.

[jan]

Hi tl,
Thank you for your response.  I have been tested for Lyme, Lupus, and who knows what else.  A couple drs. recommended spinal taps if the MRI chg'd.  It hasn't, so...  My current neuro said he wanted to talk about one, but that visit was upsetting so I didn't remind him when he apparently forgot.  

I am so tired because of these dr. visits and tests the past couple of years, I should say stressed!  As I was waiting for my TEE yesterday I told my hubby this is it, this is the last test!  I can handle the MRI's, even tho I don't understand and think they're a waste of time and I have to have annual EEG's if I want any chance of getting off seiz meds.  I actually backed out of TEE yesterday, because it wasn't as planned.  Had it resched. for this morn with my cardio, as it was supposed to be.  

I don't think I can go thru a spinal tap.  I just can't handle anymore and right now, I am frustrated and thinking of another diag (MS) *rolleyes*... ignorance is bliss.  I am just going to go on the premise that it is a stroke. (The TEE showed my heart wouldn't have caused a stroke).

Do you know about the group "Friends with MS" ?  It is a really nice group. Here is the link:

http://groups.yahoo.com/group/FriendsWithMS/message/7790

Also, there is a chat on Yahoo under Health & Wellness, user chats FMS/CFS/MS/LUPUS/ARTHR/ETC (or something to that effect). A good chat room!

Thanks, again.

[tlpounds]

I can understand your reluctance and tiring of Dr. visits, although my diagnosis came as somewhat of a relief since my mom had just had a brain hemmorhage and I thought I either had that or a brain tumor.  There ARE worse things than MS, and if caught early enough, the medications are quite effective in controlling the symptoms.  I have gone to the chats, although not recently.  As for the spinal tap, it's not near as bad as people tried to make it out to be.  The only suggestion I would make to anyone is not to get up for several hours after (my hospital had me walk out of the room and out of my car after an hour - and this was not long enough).  Although learning that I had MS was hard on me, I found that the diagnosis cleared up a lot of things (all the strange seemingly unrelated symptoms I had been having).  I had never had any seizures until recently, and it is thought to have been caused by the lesions that I've acquired from the MS.  So, good luck, and just remember - it's better to know and get things started than to keep waiting.  I hope yours is not MS, but it's not the end of the world - you'd be surprised at how many people live a completely normal life with MS.

Good luck and prayers.

T-

[kidcare]

I have been monitered for over a year due to finding 1 lesion on the brain and in 6 months finding 2 more.  Last May, I went to a MS specialists in Atlanta, Ga. and he did not feel I had MS but wanted me to continue to have MRI's since I had lesions(my lesions are not in the typical places for MS). One thing the doctor said was to make sure I had the MRI's at the same facility.  My MRI in Dec revealed no new lesions or changes. Since I have fibromyalgia and bad migraines at times, it's hard  know when I feel better.  They think the lesions may be linked with the migraines.  I do know that 2 of the MRI's were after a long period of having migraines..I knew something wasn't right.
I had a spinal tap in my neuologists office ..I had a 5mg valium and never knew she had done anything.  I weighed about 145 and she said if I had been heavier she would have done it as outpt.  I know it's gotta be tough but you can't give up.  Find you a neurologists who will listen to you and talk about things..I could not make it without my neurologists.  Stress is a bad thing so try to limit this as much as possible.  Look into the research by Bob Barefoot on coral calcium supplement.  Good luck!!

[jan]

Hi kidcare,

Thank you for the response and the encouragement. :o)

I get my MRI's done at the same place, but it is always another radiologist who reads it.  I would think that mattered, too. ?

I have had so many diagnoses in the past 4 yrs (almost) and seen so many drs. *stress*  Then in '01 when I had the seizure, boy what they put me through.  That was bad, but worse when I got the diag of epilepsy!  I have just gotten over the anger and am still having probs with the diag even so.  I couldn't handle getting another test right now, and espec another diagnosis!!!

I have been doing my utmost to avoid my neuro and that meant getting no relief for a new and very uncomfortable symptom I was having recently (primary said it was neurological).

I guess time will tell and hopefully that will be a fading of the whole experience!

Thanks again tlpounds and kidcare!

Hugs