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Had all the test.....

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Posted 11/30/2010 6:03 PM (GMT 0)
ok i have had bunches of blood work, and had a lumbar puncture, blood work showed lyme and doctor just knew i had ms, but the lumbar puncture came back all - except for Myelin and it is high....they are going to treat me as having lyme with antibotics for 30 days, and take more blood work, my symptons are dizzy at times really bad, muscle and joint pain, feel sick to my stomach, vision is a little better with the B-12 injections, fatigue is terrible, memory sucks, have troble with saying words at times, and if you cant tell spelling also, chest pain, sharp pain behind my ears that run down my neck a little ways, and there are more,  all a little better with the B-12 injections, just not cured.  confused   and this is the way i feel...........ugggghhhh dont know what to think anymore.
Posted 12/1/2010 12:22 AM (GMT 0)
Hi Just,

I am sorry you are feeling so awful.  The Lyme MS debate is a tough one.  They share near identical symptoms.  Did you have an MRI?  Did it show lesions?  I'm sorry if you have already stated this, I just can't remember. 

I am glad to hear that you are getting treatment for Lyme for at least 30 days.  Many people with Lyme feel that 30 days is not long enough.  Indeed it may not be. 

Hopefully you will feel better after the antibiotics.  If not, then take your test results and get to another doctor.  You may want to try to see an MS specialist.  If you don't know who that would be, check with your local MS society.  They can give you a list of names of neurologists who specialize in MS. 

Please, ask any questions you may have. 

Posted 12/1/2010 11:35 AM (GMT 0)
Thanks Gretchen, Yes I did have a MRI and it did show lesions, this is sooooo confusing.....I have been sick for years and was told i had fibromyaliga, so for years i have just delt with everything that has been going on with me, my family doc has been very good to me as far as treating my symptons, thats how we found the lesions, i keep having really bad dizzy spells so he sent me for a MRI, and dont get me wrong, i really like my neuro doc, but the doc is only in one day a week, so it really sucks trying to get any questions answered if you dont have a appoinment, so i have started writing everything down.....so now again it is a wait and see game....
Posted 12/1/2010 2:23 PM (GMT 0)
Can you make an appointment with a specialist?  If that's at all possible, try to see one. 

I know it can be very frustrating to be in limbo.  Hopefully this will turn out to be something more treatable than MS.  Even Lyme can be very difficult to treat successfully. 

They good news about MS is that is typically progresses very slowly even without treatment.  Treatments are VERY expensive so be sure you have excellent insurance before you get a diagnosis.  The other thing to keep in mind is that even if you were to get a diagnosis, most of MS is then symptom management.  I deal with a  new normal after ever flare........I am left with new permanent symptoms.  There are four mainstream treatments that attempt to slow down the progression of MS.  They are Betaserone, Rebif, Avonex (all of these are interferons) and Copaxone.  You can google these and get more info.  All of these are daily to weekly injections you do at home.  These meds do not treat symptoms. 

http://www.mult-sclerosis.org/diagnosingms.html

This is an excellent website that discusses the diagnostic process of MS. 

My presenting symptom was chronic vertigo.  It progressed to the point of wall walking.  I have never had that go away.  I live with vertigo and have for four + years now.  The damage from MS is permanent.  It is from a large lesion on my cerebellum. 

I wish you the best of luck.  Please keep us posted.

Posted 12/1/2010 2:32 PM (GMT 0)
Thanks for all the info..... i will
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