What should I do?

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sandune
Regular Member


Date Joined Jun 2008
Total Posts : 83
   Posted 7/30/2008 2:37 PM (GMT -7)   
Hi I was wondering if anyone has has this elevated in their bloodwork. I am getting B12 injections because the fatigue is beyond crazy and this has been linked to low B12. I do not have any energy and every day is a struggle to do anything. I had the Baer test and the results are negative. The doc is waiting for me to have spine MRI. I am so tired it is hard to go anywhere. My hands feel weak It is heavy to lift a milk container. I have a UTI again. It is hard to do more than one thing a day. Can anyone relate to this? The doc wants to know if I want to go ahead with spinal tap. Does anyone know if this can be done as an in patient? I am so scared of that headache. Oh yeah I do have lesions on brain MRI and they have progressed since 3 years ago.

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 7/30/2008 6:54 PM (GMT -7)   
Hey Sanddune

Yes, i'm sure many here will be able to relate to this...i can. Chronic fatigue can be one of the worst symptoms of ms. I don't have ms, but some other neurological something going on. Even still, i had horrible fatigue early on. My doc gave me a med called Provigil. It was great! Many others here are either using it or have used it and can vouch for it's effectiveness overall. There are some who dont find the relief they need in it, but may use other meds such as Ritilin. Of course these are just suggestions. Please discuss this with u'r doc and see what, if any, he/she suggests for u.

Yes, a spinal is typically done as an outpatient proceedure and only takes about 10-15 mins for the actual spinal tap, but u may be at the facility for a few hours waiting depening on their schedule. It is a simple task, but it'll be very telling overall. As for the headache, if u get one u can call u'r doc or the facility and request a 'blood patch' which will help to alleviate the pain rather quickly. Be sure to drink lots of liquids, esp caffiene drinks, and lay flat as long as u'r told to. Take care friend and let us know how u'r doing.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 7/30/2008 7:51 PM (GMT -7)   
Hi Sanddune, I can totally relate to your fatigue and Rhonda's right on about the Provigil, it's my godsend!  I tried the B12 and alot of other supplements and didn't get much success... but the Provigil really helps... I still have some fatigue but nothing remotely close to what it was before I used and missing it is devastating. So I'd look into it fast if I were you. The doctor gave me samples at first so I could try it (and then convince my insurance to go for it).
 
And the spinal isn't always bad... it's like Rhonda explained, and usually if you do what the docs say, it goes good... the spinal is an important tool to the doc for lab of the fluid. So I'd go thru it, (I did) and get answers. That's always the most important thing to me - answers.
 
Hope you feel better soon!  
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


sandune
Regular Member


Date Joined Jun 2008
Total Posts : 83
   Posted 7/31/2008 1:37 PM (GMT -7)   
Hi Thank you for the replys. Does the spinal tap tell them for sure yes or no if you have MS?

D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 7/31/2008 9:01 PM (GMT -7)   
I don't think it's a for sure... from what I understood from my neuro, it's a tool to get a reading. If you're throwing o bands then it'l confirm it, if you're not, you can still have MS and not show any. (That's me). :) So he says it's a good yardstick to keep a baseline of what's going on in the spinal fluid but it's not the definitive answer.
 
For him with me, it was the continuous quarterly visits with repeated reviews of the neuro exams, listening to my symptoms (new ones kept cropping up- increased imbalance, vertigo, stumbling, more numb parts of my body - face quadrant, left arm, hands, feet, big toes... then finally the kicker was optic neuritis flare up and blurry vision in the right eye) Still I passed Evoke potential tests, MRI's, and the LP... go figure... yet, with all the other stuff he was convinced after trying to disprove it for 18 mos that it was MS... and so far it's running true to form.
 
Now we'll be discussing progression therapy next week... yeah or nay.
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 7/31/2008 9:25 PM (GMT -7)   

Hey Sandi,

The O-bands show up in 80 - 90 percent of MSers.  It is not a sure thing but it is quite common to have them.  It was the second part of my testing.  I had lesions on an MRI (like you do) and then I had the lumbar puncture.  I had the O-bands, after that I failed the evoked potentials.  It was a clear-cut done deal for me.  You could have no O-bands in your lp but with your MRI and a clinical symptoms, you could end up with a dx.  It really depends on what your doctor is seeing in his exam.  I know this waiting is no fun.  I know you are not looking forward to an lp but it really could be helpful.  If you have MS, you really need to consider treatment and time is of the essence (according to most research lit.)

I have never heard of a lp done as an in patient.  I would think that is an insurance problem.  You may be able to get that if you are willing to pay out of pocket.  I am not sure that would be worth it.  Tell yout doctor about your concerns and see what he has to offer.  Good luck and keep us posted.


Gretchen       co-moderator MS board       diagnosed with MS July 2006

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