New to this group, recently diagnosed with MS

[Mamaking4]

Hi all, I was diagnosed with MS in Aug. Long story short, I went running last year and I had an injury. I had a MRI of my spine and lesions had shown up and they suggested a MRI of my brain, could be MS. Meanwhile I got pregnant so I put off everything. The whole time I was pregnant my left hand became numb, so of course I was freaking out it was MS. After I had my daughter the numbness went away, turns out it was carpal tunnel. My neuro (as awesome as he is) called when my daughter was about 1 month old wanting me to come in and do the brain scan, so I did. The scan showed a few lesions that were inactive so thats why I don't have any major symtoms. I do however have some symptoms. My doctor said I shouldnt have any. The first symptoms is in March 2011 I woke from a deep sleep with a severe aniexty attack. I have never had one in my life. It never went away either. My thoughts are crazy and I feel like I'm losing control. I had a baby less then a year before that so I thought it was hormonal so I was put on lexapro. ever since then I can not be off the meds or I feel like I'm going crazy!! It's horrible! I also have memory loss and extreme confusion. I can't think straight and my head is spinning. I read something it's not sinking in. It's really effecting my day to day life. Every now and then I get a tingling numbness in my middle back, and pains in my knees. Those symptoms come and go. My final symptoms was a week before my brain scan I had a ocular migraine. It came and went after 20 minutes and didn't follow up with a actualy headache. Im originally from Long Island and there is a huge possibily that I could have Lyme. I live in florida and can not find a doctor who can test for Lyme. I feel like everything is spinning out of control. If I still lived on LI the first thing they would test for is Lyme. Any advise?? I'm going crazy!

[JaneK1975]

Hi and welcome to the community. Sometimes lesions can cause symptoms that are mild, or we blame the symptoms on something else. That happens especially before we are diagnosed.

I had several relapses before my diagnosis that I blamed on other things. Once I even had a relapse that was severe enough to keep me from work, but it never crossed my mind that MS could be the culprit. I went to a doc and they blamed it on something else. On the other hand, I've also hand symptoms that mimic my MS symptoms but I know were due to migraines. Sometimes you just can't tell what's causing a symptom.

I'll be wishing you the best.

[Mamaking4]

wow thanks for helping me understand. I'm still confused why I haven't had symptoms ever if the lesions are older. Which my doc did say I have older lesions, they are grey color. I do feel a little less "crazy" not just in denial. It's hard to accept the MS diagnoses when I feel good, and to have to take meds that will make me feel sick. Then again if I have Lyme I couldve have passed this on to my children. UGHH thanks all for your imput, it's much appreciated!!

[Lulu54]

hi - sorry I haven't been around much lately to welcome you and the other new folks to this world of MS. I would definitely get a second opinion in your case and insist on the Lyme test.  It can be done through your doctors in Florida - the blood sample is sent off to a specialized lab for analysis.

Almost always there seems to be confusion about lesions and what it means when they are active.  Active lesions only indicate new disease activity - they are seen on an MRI with the use of a contrast agent and are under about 40 days old.

As a very simple example.  Think of water - there is cold water and you can also have boiling water.  They are different, yet the same.  They will both make things wet if it is spilled.  Old lesions and active lesions cause problems in the same way, too.  They are different yet the same and are both scarring 'sclerosis' and capable of interrupting the signals from being transmitted smoothly.  When a lesion is found that is active, it may or may not be creating new problems, depending on its location.  Our brain has lots of unused territory and if the lesion is in those spots it may never cause a problem.  

I hope this makes a bit more sense.  Welcome again and go get that Western blot test done.

be well,
Laura

[Ricobord]

I would definitely recommend the Western Blot. Lyme can lay low in a body for quite a while, suddenly appearing when there is a big stressor or injury.  Docs in Forida know little to nothing about Lyme. They are repeatedly told there is no Lyme in Florida and essentially not to diagnose it. I don't know how they explain all the FL Lyme patients, or why they don't know how to diagnose and treat people who acquired it elsewhere.

I tested negative on the screening test, so the lab didn't even run the Western Blot.  But I have since learned that the screening test runs false negative about 30% of the time.  Also, most labs only show the CDC test criteria for the WB, which was developed for surveillance purposes (sampling). It was designed for minimal false positives without regard to false negatives.

Your best bet is to get a Western Blot at IGeneX.  They do more advanced testing and find more cases that other labs miss.  If you think you might have picked up Lyme in the south, then you are more likely to test false negative at a lab that uses mass produced test kits. Researchers in the South have said that the CDC test interpretation just doesn't work well there, probably because there is so much more genetic variety to the bacteria there.  (Tests were developed in early stage New England patients primarily with rheumatic symptoms.)

Also, you will want to get your kids tested. Active infections can transfer to a fetus. Babies born with Lyme who go untreated often develop autism-like symptoms months or years later.  (Dr. Charles Jones in CT is the pediatric expert on Lyme and coinfections.)

You are welcome to come post on the Lyme Disease forum.

[kwarendorf]

Hi Mama -

Lesions that are inactive can cause symptoms. Lesions are areas of damage to the nerve's myelin sheath. This damage can interrupt the proper flow of messages from the brain.

I currently have no active lesions but my feet hurt. There is nothing wrong with my feet. It's a garbled message from my brain telling the pain triggers in my feet to fire.

I think that, if your docs in FL have never heard of a western blot, you are wise to come to NY :-) We have lots of really good MS specialists!

Kyle

[Mamaking4]

Do the lesions cause tingling if they are inactive? It's very hard to get answers where I live. I am planning a trip to NY, I think I will get more answers there. I had a lyme test done here and it came back negative. I called my doctor in NY and they said a western blot needs to be done along with the blood test. I called the doctor here and they have never heard of a western blot. Soooo, I think I need to go to NY! I did read online that Lyme does cause lesions on the spine? I feel like I can relate to the symptoms for Lyme then MS only because of the anxiety attacks and depression, along with the brain fog and confusion. Thanks for your help! T

[rendean]

Jen is correct. consult with a MS specialist and he/she she run ALL the tests to rule out evreything including Lyme which is a common mimic of Ms. also, check out the Helath Pages located to the right of this coulumn. there is a  page dealing with MS mimics which might of use to you.

the link to part one is ;

http://www.medhelp.org/health_pages/Multiple-Sclerosis/MS-Mimics---Part-I/show/375?cid=36

Good luck with finding  a  cause for your symptoms and let us know if we can  help you out with any further questions!

Warmly,
ren

[jensequitur]

Of course, Lyme should be excluded.  It does create lesions in the brain, but it doesn't create lesions in the spine, and the tingling numbness you describe in your back is most likely caused by lesions.  I have several in my spine, some upper, some lower.  

The doctors, even the neurologists, sometimes don't have a clue about MS symptoms.  I don't really have a lot of lesions in the brain - some, but it's not lit up like a christmas tree.  However, I had across-the-board symptoms ranging from aphasia to paresthesia to clonus and spasticity.  My old neurologist didn't understand that, but my MS specialist does.  I recommend getting a specialist who can help you find some treatment solutions.