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carolynvb
Veteran Member


Date Joined Oct 2006
Total Posts : 540
   Posted 5/24/2008 8:29 PM (GMT -6)   
Hi Gretchen,

Thank you for your response. It was actually the nerve test I was confused as to what test he was doing. MRI on neck is on 28th and we are going to expidite to spinal tap as I am in neurological hell right now. having trouble seeing the light at the end of the tunnel :( I am told without the tap we will not be able to distinguish the difference with the foci and I will either start ms meds or have to have a PICC line put back in for lyme and do the IV antibiotics daily. Either way stinks. Short term memory is really bad. Tremors and weakness is awful. dizziness and balance are awful....thankfully pain is minimal. I have started getting numb on and off in embarassing places soooooo wierd. I do not know if that is a MS symptom....For the first time in my life I have had to ask for help and my hubby had to help me cut up my food.......I feel so ashamed with my slurring speech even though it is not anything I can control and every day is different thank goodness in (as far as the speech) I am having to nap for the first time in my life even with 200mg provigil. If I do not nap I cannot function.  By about 2pm the only way I can explain it is there is just nothing left to give.  I could pick a spot on the floor if necessary and just sleep...I am so scared. Have not been able to work my business I am a real estate agent and driving etc is tough right now. I am having a tough time keeping up with my 4 month baby. I really need to have my other kids step up and help. My husband is great but I feel like I am really a pest needing help. I always have been the one to set the tone of the household and the strong person and now......not good.
Please tell me with treatment this gets better. Does the spinal tap hurt? I do not care but need to be prepared. I need answers. Both options are not good. I am usually strong. My meningioma (brain tumor has not grown following radiation last year that is good) hoped it had gone...boy it has been a long couple of years.
Any suggestions to get through this until I figure this whole thing out? Is there anything that can help with the tremors????

thanks,
Carolyn

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3538
   Posted 5/24/2008 11:13 PM (GMT -6)   

Hey Carolyn,

First, take a deep breath and try not to worry about wether this is MS or Lyme disease.  Let the doctors work that out.  Just try to concentrate on lots of rest and caring for yourself and the baby.  You have posed a lot of questions.  Let me start with the lumbar puncture.  It was not a lot of fun for me.  It was a bit painful, but it was very short lived and I was up and around the next day with no problems or pain.  But please know that I am the exception; most have no problems at all during the procedure. 

I know that Sunny mentioned steroids.  I know that if they are suspecting Lyme, then steroids are not an option.  Don't do the steroids unless you are sure the Lyme is gone.  Know that in MS the steroids just make you more comfortable; they are not a treatment - which means you will not lessen the damage done by an MS flare.  So don't worry about steroids for the time being.
 
I don't know what to tell you about treatments making this better.  Typically damage done by MS is permanent.  You flare, which means you have an accute attack that has damaged the myelin in your central nervous system.  After some time (typically a few weeks to a few months) you may re-myelinate some.  You typically do not get back to normal or how you were before MS.  You do learn to live with residual symptoms and you learn to adjust to your new limits.  You go on like this until you have another flare at which point you learn to adjust all over again.  By the way, that is the way of relapsing-remitting MS. 
 
MS treatments are meant to slow down the progression of the disease.  As you probably know, MS is progressive and incurable disease for now.  It will progress even with the best response to treatment.  Many start on a therapy only to flare then they panic and switch meds.  Most experts and research says that it is important to get on a therapy and stay on that therapy from the earliest diagnosis possible.  I flared huge 7 months after starting a med. - it was very scary to think that the med might not be working.  But now I have gone a whole year plus a few weeks without a flare.  I do feel better, but remember that MS meds DO NOT treat symptoms.  There are a whole host of meds that treat symptoms.  You have already discovered one; provigil.
 
I too, suffer from the constant balance and vertigo.  It was my major presenting symptom and I have had ever since.  I use a cane frequently to manage my balance.  I can walk without it but I can't look around.  I have to concentrate on just that, walking.  Today I spent the day at a western fair and rodeo - I had to have my cane in order to walk and look at the sights around me.  I use that cane like a tripod.  It keeps me centered as to where my body is in space. Without it,  I stagger and lose my balance and will fall if I walk and look about at the same time.
 
Most cognitive issues in MS are rare and mild.  They include things like memory problems, word retreival, attention and focus, and processing. 
 
Numbness is one of the MS symptoms that is nearly universal. Most people with MS suffer from this to some extent or another.  For some the numbness is transient and for others it is ever present once it hits.  For most, once numbness occurrs, it is there to stay.  That is how it is for me anyway. 
 
I am not at all good about tremors in MS.  I have not had any experience with that and so I know pretty much nothing about that.  Sorry.
 
I don't have any answers in the journey you are on.  I am sorry you are going through all this.  It is a scary thing for sure.  It is compounded by the lyme and the meningioma.  I hope that you feel better real soon and that you get some answers real soon.  Until then, just do your best to take good good care of yourself.  Lean on others as needed and know you are not alone in this. 
 
Love and prayers,
Gretchen       co-moderator MS board       diagnosed with MS July 2006

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