Gretchen, Moderator from MS board....Question

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CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/12/2009 11:48 PM (GMT -6)   
I was wondering what your symptoms were from MS. When I listed my neuro symptoms, you said that my post pulled you in so I'm wondering if you had similiar symptoms or you were just familiar with Lyme symptoms?

Btw, my Lyme test was not positive although I'm still going to continue being treated.
2003 symptoms started;panic attacks,anxiety,heightened senses.
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3538
   Posted 6/13/2009 6:26 PM (GMT -6)   
oooh I almost did not see this.  If I do ever miss a post, please feel free to find me over on MS. 
 
My presenting symptom was vertigo.  That is it.  I didn't have anything else.  I was just spinning.  I thought it was an ear infection.  I had never really experienced anything like that.  I went to the PCP and he gave me a course of antibiotics.  Of course they did not help.  I went downhill quickly.  about three weeks after the vertigo started I could not walk except if I was holding to a wall or my husband and someone else.  That is when we went to the ER.  They admitted me.  I was there for about four days.  After lots of blood work and medical history, a cat scan and an MRI and lots and lots of neuro exams.....reflexes and junk.  They decided that I had had a small stroke since I had a "spot" on my brain MRI.
 
A few weeks later, I had another MRI and they found another "spot".  That is when I was referred to UCLA MS clinic.  I had a lumbar puncture, evoked potentials (vision, hearing and lower extremeties), I also had a thorasic and cervical MRI.  I also had lots more blood work. 
 
There was no evidence of anything other than MS so that is what they went with.  It was about 6 months after that that I asked to be tested by igenex.  My PCP complied and that all came back neg. 
 
I had at this point, three lesions (two brain and one spinal).  I had failed the evoked potentials for vision and lower extremeties.  I had MS oligoclonal bands in my spinal fluid but not in my blood.  I had nothing in my blood that could indicate a reason for this.
 
I was started on copaxone.  about 7 months after my diagnosis, I woke up to a horrible flare.  I woke up numb from the knees down.  This was sensory and not paralytic.  I was immediately place on the IV solumedrol 1,200 mgs per day for five days.  The numbness continued to climb in a diagonal pattern until it was above my waste on the left side and mid thigh on my right side.  I could walk but it was very difficult.  I had no skin sensation from those indicated places down.  The numbness did not stop climbing until about five days after I stopped with the solumedrol IVs.  It took about about three weeks from when I woke numb for me to start feeling better. 
 
I added a lot of symptoms after that flare.  I still have the chronic vertigo except that it has cooled and gotten much better.  I have a very bad left leg.  I have near total numbness through that left knee and a lot of spasticity.  I have near total skin numbness from my mid shins down.  I have some vision problems.  I have nystagmus which makes reading small print hard.  I have some numbness in my left thumb. 
 
Wow, I am sorry this is so long.  I hope this helps.
 
 
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3538
   Posted 6/13/2009 9:19 PM (GMT -6)   
yes yes.  I know.  I also know I don't have lyme.  I don't share the symptoms and problems you have.  I believe mine was triggered by a viral infection.  All MS is triggered by something.  That is a well known fact.  I just don't believe it is always lyme disease.  The actual trigger for each person that develops MS is different and is usually impossible to figure out.
 
I am sure.  Just as you are sure you have lyme.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/13/2009 11:49 PM (GMT -6)   
Gretchen,

Thank you for posting all of that. I've read MS symptoms a while back when I wasn't sure what I had at the time and some of the symptoms seemed close to what I had. But, now that I've read about Lyme and it's symptoms, I am positive this is what I have.

I did have a touch of vertigo but nothing near what you went through. My pain is constant too. I hurt everyday, all day long.

Anyway, thanks again for posting that for me. I appreciate it.
2003 symptoms started;panic attacks,anxiety,heightened senses.
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3538
   Posted 6/14/2009 9:32 AM (GMT -6)   
Sigh.............I am done here.  There is NOTHING worse than being told you don't have what you think you have.  It was nice for a while.  I will stick to my own board. 
 
 
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


alfers
Veteran Member


Date Joined May 2005
Total Posts : 2671
   Posted 6/14/2009 11:39 AM (GMT -6)   
I think it's best to let others decide for themselves what illness their symptoms fit and how to proceed with doctors and treatment. There have been conflicts in the past because members from the lyme forum have tried to convince members from the MS forum that they really have lyme. Nobody knows enough about either of these diseases, and it certainly is possible that they're related, but I think we have to respect other people's thoughts, their doctors and their research and treatment protocol, and not try to push a certain view on them, even if it is well intended.
Lyme and co-infections since approximately 2002. Diagnosed in 2005. Abx for two years straight, then on and off for another year. Off abx since fall 2008 and feeling great (lyme-wise)! Also diagnosed with lymphomatoid papulosis and slightly low thyroid function.

Moderator for Lyme Disease forum


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/14/2009 1:39 PM (GMT -6)   
Gretchen,

I'm so sorry this has happened. I should have went to the MS board or emailed you instead. I'm truly sorry.
2003 symptoms started;panic attacks,anxiety,heightened senses.
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements

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