ms appt didn't go well

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domanique
Regular Member


Date Joined May 2008
Total Posts : 156
   Posted 6/14/2008 9:49 PM (GMT -7)   
i went to the ms specialist and he did the usual reflex tests, the strength tests ect...  then he looked at my mri, which was w/out contrast and said theres no way its ms, i had no lesions on the mri and passed the neuro exam.  i know i should be happy about that news, the problem is i still have no idea whats wrong with me.
 
i have 3 daughters and a dh i love very much and i feel like evryday that goes by i'm letting them down.  i want answers so i can do something, anything to try to make things better.  i'm tired of going to bed feeling bad and waking up the same if not worse.  i am stuck right now.  i don't know what to do now.  i'm trying not to just give up. 
 
heres my story, i had my first daughter when i was 17 and from that day on i've had problems with fatigue and weekness.  however for about the past 3-4 yrs new things have been happening.  it starts off with these pain episodes, its like this deep down pain that seems to come at night or early am.  it radiates from my fingertips to my toes.  after the pain leaves i feel achy and exausted.  the tiredness i experience is like i need to be in a hospital, like i can't function. 
 
these episodes come about 2-3 times a year.  the last time it hit me alot of other things happened, i got so week i had to lean on things when i walked, i started losing my balance,feeling dizzy like eveything around me was spinning, i started seeing floaters, feeling out of it, spacey.  i couldn't concentrate at all, i couldn't hold a pen without pain, i kept dropping my utensils.  i started forgetting things like my zip code, address, phone number.  i started to lock my self out of the house.  i kept forgetting words. 
 
i started having muscle spasms, my muscles would visibly jump in mylegs, hips, arms, then there was the twitching in my face, hands, arms, and legs, i have severe insomnia, feel vibrations in my legs.  feel like i have electricity surging throughout my body which makes me feel like i want to jump out of my skin.  i get shaky inside and out.  i can't take the heat, i take a shower and feel like i'm gonna pass out.  i feel like my knees are week.  i have times where i feel a tightening in my throat which makes it hard to swallow that can last a day or week.  it just feels like someones choking me, but i can breathe fine.  my arms and legs feel at times like they are being drawn up. 
 
the ms dr just gave me lyrica to try, i don't get why he'd do that when he has no idea whats wrong with me.  he said maybe its peripheral neuropathy and then he said no i don't think its anything neurologic.  so, why do i have all this going on?  what else would cause these things but something neurologic?  do any of you have any advice?  thanks for caring.

carolynvb
Veteran Member


Date Joined Oct 2006
Total Posts : 540
   Posted 6/15/2008 5:52 AM (GMT -7)   
Hi Domanique,

I know it is so tough. I had unexplained symptoms for a long time. I did not have any evidence on the brain back then. Why I have them now I do not know. Look around for answers. I know it is a point of great contention but when there are no other answers we sometimes have to look at other possibilities. Check out the lyme forum on healingwell. Copy this post and see if you can get a referral to a Dr that can help you figure out if this is what you might have. I do experience almost all the things you mention and it is scary I know. It seems I may have both. I know I have lyme as I tested positive after many tests for this. I am now being tested for MS and the doc thinks real possibility I have that also. I was told not ms for a couple of years and now everyone and their brother think it is...dr's ....go figure!
If no one knows what it is you wonder where it will all end. You just want answers. I am sorry you have no answers yet....hang in there.

Carolyn

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 6/15/2008 6:51 AM (GMT -7)   

Domaniqe,

I am very sorry that you are left without answers.  I do feel it is good news that the doctor does not believe it is MS.  Clearly, you have something going on.  Perhaps it is something more treatable than MS.  That is my hope for you.  You have gotten some good advice from Carolynvb.  Keep at those doctors and now you can tell them, "I went to a neurologist who feels that it is not neurological.  What direction do we take now to get some answers?" 

Try to hang in there.  Keep up with your quest for answers.  Good luck and let us know how you are doing.
Gretchen       co-moderator MS board       diagnosed with MS July 2006


Willowmom
Regular Member


Date Joined May 2008
Total Posts : 88
   Posted 6/15/2008 6:57 PM (GMT -7)   
I'm sorry.  It is frustrating and I think many would echo my sentiments that while no one wants to be diagnosed with MS, it was somewhat of a relief when I finally got the dx.  I was worrying I had ALS.   Did the dr. mention doing an MRI with the contrast to see if that would be different.  Also- did they MRI brain and spine or just one?   Willow

carolynvb
Veteran Member


Date Joined Oct 2006
Total Posts : 540
   Posted 6/17/2008 7:42 AM (GMT -7)   
Domanique,

How are you feeling? what is your next step? sometimes helps to talk it all through. Also, sometimes, it is a good idea to start all over again. Leave all your other medical records behind and start fresh so there is no-one meeting you with any preconceived ideas....Does your insurance give you that option or do you need a referral?

I do think that it is necessary to have the mri with the contrast as willowmom stated.......can you ask for this? You may want to have the thyroid checked and also hormone balances.....when we are unwell our adrenal glands and thyroid and lots of other things act up and everything can get out of whack .....I plan to have mine checked a little while down the line as I just had a baby...
Have you checked vitamin levels? Although I eat well I had scurvy!!!!!!!!! eye eye captain!!!!!! my vitamin c level was completely depleted and I have to supplement with LOTS of c as well as continue to eat well.....

Are you taking any medications. Some of these have terrible side effects that are not even listed....our bodies react differently sometimes. I knocked out a lot of meds to see if any were making things worse. You do need a dr to assist you with this...some you can not just come off of. I came off mine as they were antibiotics and I have cut down my anxiety meds slowly. I have only been taking them a couple of months so I figured it would be ok to do on my own.
Not a good idea though without drs approval. I researched a lot before making that decision.

Just a few thoughts.....did not want you to feel isolated....do you have a lot of family support? My family is all abroad I just have my immediate family...hubby and kids so I know it is hard trying to figure things out on your own especially when you do not feel well.


Let me know if there is anything I can do to help :)

Carolyn

domanique
Regular Member


Date Joined May 2008
Total Posts : 156
   Posted 6/18/2008 9:12 PM (GMT -7)   
thanx for the replys.  it means alot to me.  i decided to try the lyrica he gave me and everytime i take it i get a huge headache like a 1/2 hr after.  i relly still am not sure what to do. 
 
i have an appt with my neurologist on fri.  he didn't know that i had gone to the ms specialist so i'm quite nervous to go back knowing the ms specialist has sent on the info from my appt with him. 
 
my family is there for me, they see how i struggle to get through everyday and they want what i want, answers.  i've been considering going backto square one and returning to my family dr. and try to talk to her about all of this and see whatshe thinks. 
 
i am not on any meds except the lyrica which i just started last week.  the ms specialist did order a test to check my vit b level.  my thyroid has been checked over and over, and its fine.  thanx again for caring.
 
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