Multiple Sclerosis

[pnashef0607]

Back in about June I started getting this weird electrical like sensation that would start in the back of my head and travel down my arms and sometimes legs when I bent my head forward or turned it. It was quite uncomfortable. Then it went away. I started to pay more attention to what was going on and noticed other strange things, like memory loss, forgetfulness, occasional blurred vision. Then in late August the episodes started again. I saw my PCP on 9/11 and had an MRI done of the brain and neck (I should mention that I have had 2 previous which showed T2 white matter lesions in the brain). Again the same thing, the lesions showed up but it was still determined by the fact that my neck didn't have lesions that I didn't have MS. Another weird thing was that my reflexes are all slow in the legs and arms. So... I managed to get a copy of the last MRI report and it says that differential diagnosis includes small vessel ischemia but MS cannot be excluded.

Now the episodes just started again today, I had one that was really weird and has left me with tingling in my arms and legs and a feeling of pressure at the back of my neck.

I don't know what to do, this keeps happening then going away, my PCP and neurologist basically blew it off as nothing or maybe a side effect of the medications I take for fibromyalgia.

Has anyone had MS present this way? What is small vessel ischemia? All I could find was it's sort of like having mini-strokes.

Any answers or suggestions on what to do would be most appreciated.

Thanks, Pam N.

PS I also suffer from non-aura migraines

[wrenway]

I have had the buzzing down my spine for years. It's called Lheramites (sp?) Syndrome. It doesn't "do" anything - just annoying. If I were you I would find another neurologist - it sure sounds to me like it's MS. You need to find someone who is caring about what is going on.

I was dx in 1985 - numbness/tingling in hands/feet for 4-6 weeks at a time. It would come and go - the "buzzing" also comes and goes. I also went 8 years with no symptoms at all and had a child during that time with no problems. I have had a wide variety of symptoms and spent 5 years in a protocol at NIH (National Institutes of Health) and learned a massive amount of info.

For me, the "not knowing" is worse than dealing with symptoms. I have always been told that the first 5 years of diagnosis will pretty much give an indication of how the disease will progress. I now have some symptoms that have worsened over time - some that have never come back. It's a weird disease, but it is one that can be dealt with. Don't be afraid to switch doctors - I have had experiences with some real jerks.

Best to you

[GuestOne]

Hi Pam,

You may want to study Lyme disease. Contrary to popular belief it does occur throughout the entire USA.

Do you have any other symptoms that are not consistent with the MS diagnosis?
Lyme is frequently misdiagnosed as MS; it can also cause white matter lesions.

If you have any doubt about whether Lyme occurs in your region, contact your state board of public health and ask for the epidemiology division. Ask them to send you ALL the Lyme case counts. When you get this information, look at the number of cases of Lyme disease in your county. If the number is two or greater, then your county is considered endemic by the CDC. See the CDC's case definition for Lyme disease, specifically the definition of an endemic county. It only takes two cases of Lyme in one county for the county to be considered endemic for this disease.

Lyme tests are very unreliable because the disease supresses your immune system. The CDC says Lyme
disease is a clinical diagnosis. The diagnosis is based upon your symptoms and exposure, not test results.

Contact your state support group for referral to a Lyme literate physician. You may want a thorough evaluation for this disease. Study the information on the Lyme Disease Association and the International Lyme and Associated Diseases Society websites (listed below). Especially read about the inadequacy of testing.


CDC Incidence Map of Lyme Disease in the USA...find your state
Lyme Disease Association
http://www.lymediseaseassociation.org/Maps/index.html#

CDC Incidence Map of Ixodes scapularis and I. pacificus, commonly known as the "Deer tick",
http://www.cdc.gov/ncidod/dvbid/images/tickmap_lg.gif

184 Lyme symptoms
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=021063

Symptom list/discussion
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=043100

WebMD definition of Lyme disease
http://arthritis.webmd.com/tc/lyme-disease-topic-overview


Symptoms of Lyme Disease medical references
http://www.lymeinfo.net/medical/LDSymptoms.pdf

Nerve Damage Due to Lyme Disease
http://thehumansideoflyme.net/index.php

Lymenet Medical Discussion Board
http://flash.lymenet.org/ubb/ultimatebb.php/forum/1/30/0

International Lyme and Associated Diseases Society
http://www.ilads.org/

Canadian Lyme Disease Association lots of good information
http://www.canlyme.com/

California Lyme Disease Association
http://www.lymedisease.org/


Lyme videos:

Under Our Skin by Andy Abrahams & Open Eye Pictures
http://www.apple.com/quicktime/guide/entertainment/

San Francisco Lyme Disease TV Talk Show
http://video.google.com/videoplay?docid=-7379547551496279899&q=lyme+disease&total=265&start=10&num=10&so=0&type=search&plindex=5

Excellent video on Lyme Controversy- ABC News in Virginia
http://cfc.wset.com/external.cfm?p=lyme&menu=news

[stulchinsky]

Hello, this is a forum moderator responding. In addition to the contributions of others in this forum, you can find physician-developed and -monitored information on Lyme Disease symptoms here: http://www.podiatrychannel.com/lymedisease/index.shtml.

You can also read the stories of others dealing with Lyme Disease at this link: http://livingwith.podiatrychannel.com/lyme-disease/.

Best wishes to you all.

[GuestOne]

Thank you.

This is a good description.

[ralph pelkey]

If they found white spots on your brain then you have ms maybe you need some one else to read your x rays it seam like its hard to find a good doctor they dont have a problem taking your money but they dont have the time to payattion to you I really hope you get a diganosis i hard knot knowing GOD BLESS i will keep you in my prayers

[Rajjpuut]

Hi Pam,


As far as your questions . . . .

Here's a great site: netwellness.org/healthtopics/brainattack/svidmri.cfm
I'd also recommend you read my response to Stacyvonne earlier today. Among other things it deals peripherally with the notion that "your doctor" can blow off your questions and your concerns.

On a personal and hopefully, useful note: the key thing to understand is that to some extent you may be able to help yourself out of the hole you're now in. Most of us know something about the role that arteries (major blood vessels) and veins (lesser blood vessels) play in our cardio-vascular health. Far fewer of us understand that the most significant sign of cardio-vascular health and body fitness is to be found in the capillaries. When you go into a doctor's office and he turns out the lights and examines your eyes with a light -- what he's looking at are the capillaries (tiniest blood vessels) in the eyeball. The eye is the only spot in the human body where you can examine the body's inner workings and overall health from the outside without any invasive practices.

If you were to look at the innards of a college mile runner (male or female) you would see that compared to you this person might have hundreds or even thousands of miles more capillary growth in her body, all over her body. Sometimes these capillaries are so small and narrow that only a string of one blood cell at a time can fit into them; other capillaries are broader. Regardless, these capillaries service areas of your body, which would "starve" for blood and oxygen if you didn't have them. The brain consumes 40% of the body's oxygen and is the scene of much capillary growth also. If you were to slowly, slowly, slowly begin to obey rule #7 of the 7 Golden Rules of Health mentioned in the letter to Stacyvonne and immediately begin practicing rules 1-6 preferably under a doctor's care (you might find a more caring and understanding doctor to get involved with you) you might find in say, five years that the capillary "mileage" in your body had increases by 10 fold or even 20 fold and you would presumably have a body that to some extent rivalled the college miler's.

I wish you a full and satisfyingly joyful recovery.

Bob

[GuestOne]

Here's a link to a few medical references to white matter lesions that mimic those that occur in MS:

http://www.lymeinfo.net/medical/LDSymptoms.pdf

There are many more references like this. You can find these on Lymenet. Search for MS and Lyme for an extensive list.