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Vocalist
New Member


Date Joined Jul 2009
Total Posts : 13
   Posted 7/26/2009 9:22 PM (GMT -7)   
Hi all,
 
I posted originally on "Not Yet Diagnosed"...but I'm still having issues and wanted some input if possible.
 
After seeing the Neuro, he said he doesn't think it's MS (would be a relief if what he had to say made sense and helped).  Instead he thinks I am having atypical migraines...I have searched and searched and haven't found any commonality between my symptoms and that diagnosis.  He put me on Depakote, an anti-seizure medication that is suppose to keep me from getting these "migraines".  I have headaches off and on but I haven't had a real migraine in several months.
 
I feel very confused and my symptoms are getting worse.  I have figured out that the numbness/tingling along with the dizziness and confusion and slow thinking is worse in the morning.  Tonight though, when i layed down in bed, the tingling was very severe and very bothersome.  Does that ring a bell with anyone else?  I really am worse in the morning until the mid to late afternoon, then seem to feel a bit better (less numb, less confusion, better coordination) until bedtime...then the numbness and tingling hits hard.  Also, I have a loss of appetite...weird for me for sure.  I am fatigued pretty much 24/7 with spurts of energy every so often throughout the day....
 
Thank you for listening and any input would be much appreciated.
 
Oh...btw...neuro did order a BAER test for this Thursday...also just found out that i'm very slightly deficient in B12 (taking pills for that now too)

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 7/27/2009 7:53 AM (GMT -7)   
Hey Vocalist,
 
I am sorry you are still concerned.  I remember that your doc told you that your MRI was normal.  Did you ever get the MRI report yourself?  Is it lesion free?  That will still be your biggest indicator.  If you don't have any lesions showing up then you may want to try a new direction for a bit.  It doesn't mean you don't have MS, it may be too early to get a diagnosis and hence treatment. 
 
You could take that time to look for other possibilities.  Remember that MS is a disease of esclusion.  You have to rule everything else out in order to get that diagnosis.  Have you consulted a rheumatologist? Or an endocronologist?  Both of those are also good places to look. 
 
My symptoms are always better in the morning and get worse as the day wears on.  I do have a bit of fatigue so that plays into this.  When I get a little tired (or a lot) all of my symptoms are more pronounced.  I have chronic vertigo and that makes me pretty loopy when I am tired or when I have had a full day.  My nystagmus is worse and so reading gets harder.  My numbness is pretty constant.  I am always numb.  That numbness can transition to nerve pain at the end of the day.  I have some coordination stuff on my left side.  I get spazzier in the late afternoons.  It is never a good idea for me to unload the dishwasher late in the day lol. 
 
Well good luck.  Keep looking!!
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Vocalist
New Member


Date Joined Jul 2009
Total Posts : 13
   Posted 7/27/2009 5:25 PM (GMT -7)   
Hi Gretchen,

Thank you so much for your reply. My neuro took me off the Depakote today. I guess he's thinking it could be causing some of my advanced symptoms. Today the back of my neck felt burnt...like a sunburn but nothing was there...I also started having more double vision and worse numbness and dizziness. Hopefully it will get better by quitting the depakote.

I do see a rheumatologist for fibromyalgia...I've had a few people tell me that my symptoms could be advanced fibro...thing is nothing I am taking for the fibro is making a difference in my symptoms. I do go Thur for the BAER test...hopefully that will tell something.

Thanks again for the encouragement.
Rachelle

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 7/27/2009 6:13 PM (GMT -7)   
Get that B12 taken care of.  And you might ask for evoked potentials test.  I had those at the same time as the BAER.  I had already been diagnosed but they were following up with more testing to see the extent of damage.  Just so you know, I passed the BAER even with MS.  It won't tell you much.  You need the visual evoked potential as well as extremeties.  Can you ask for that? 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Vocalist
New Member


Date Joined Jul 2009
Total Posts : 13
   Posted 7/29/2009 2:57 PM (GMT -7)   
Hi Gretchen,
 
I am taking B12 now and it has definitely helped with the fatigue...not taking the depakote has helped with the groggy feeling.  The numbness, tingling, dizziness, and muscle twitches are worse though today.  I am planning to ask about those additional tests since you brought it up.  Talked to the neuro's nurse again today..she said he wanted to put me on Lyrica...I explained that my rheumy had already suggested that and it's too expensive for me...she didn't even realize i had been dx'd with fibro...great another doc that listens well!!!
 
oh well...i'm just dealing with it for now and we'll see what happens.
 
i sooooo appreciate your information and encouragement....
 
Rachelle

popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 7/29/2009 5:11 PM (GMT -7)   
Hi Vocalist,

My symptoms also get worse when I am tired and when the sun goes down. I have a baclofen pump now that helps spasticity/pain. The dose is minimal in the day but even tripled at night I still have some spasticity. I used to have that really bad fatigue but has been gone for years. I think cutting the fat out of my diet helped that I know that fried food definitely makes me weak.

Good luck. Keep looking the answer is out there somewhere.
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.

"The past is history, the future is a mystery, the present is a gift."


Vocalist
New Member


Date Joined Jul 2009
Total Posts : 13
   Posted 9/2/2009 2:17 PM (GMT -7)   
Ok...so I'm still really frustrated and just want some answers.  My symptoms seemed to get better after starting the b12, but after a month of that, my symptoms have returned and are worse.  I now have a buzzing/tingling feeling in my middle back...again on the left side.  Also spots of that same feeling on my face, mostly the left side.  Numbness on face, neck, arm, back, hip, leg, foot...all left side.  The fatigue is ridiculous.  I won't even realize i was so drained until I awake 3 hours later...sometimes don't even realize i'm drifting off.
 
Went to PCP again and he retested my B12 level...has increased over 500 points, so we are good there.  PCP looked at me like I was crazy so I picked up my purse to leave and he said, now wait....he thinks I should seek an out of town second opinion at a major medical center.  The reason he is saying this is all of the neuro's in the area are in the same office.  Told me to call neuro's office again.  I did that...they never called back. 
 
Deal is...I don't WANT to have MS....I just WANT to feel better!!!
 
I'm sick of this...half the time I am unable to take care of my daughters and have to have them stay with their dad.  I started college courses, thinking that I was doing better and would be able to handle it, but now i'm worried about that because I barely have the energy to work everyday let alone take a full course load.
 
OK...i'm done venting for now...thanks for listening.
Rachelle

popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 9/2/2009 4:48 PM (GMT -7)   
That tingling/buzzing sounds nasty. Not something I have ever experienced but I see Zakia is posting about something similar - see "second opinion". Maybe you could pool your ideas and come up with something.
Good luck.
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.

"The past is history, the future is a mystery, the present is a gift."

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