Newbie Question - Not officically dx'd yet

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Denda
Regular Member


Date Joined Jun 2006
Total Posts : 329
   Posted 12/22/2006 6:30 AM (GMT -7)   
Hi All - I posted under Crittle's topic a week or so ago and theLight answered a couple questions of mine, but I have a few more and thought I better start a new thread for my next couple of questions.  Here's my history.
 
I have not been officially dx'd yet, but my neurologist has told me that it's a pretty good possibility that I am in the early stages of MS.  I went to her for rt hand tremors, random rt side numbness and random body tremors.  I had an EEG which came back normal but showed signs of possible minor seizure activity, so since I have migraines as well, I am now on Topamax, should be on 100mg/day, but 50mg/day is making me dopy, it's helping so far, so we're hoping I don't have to bump it up to the 100mg.  My MRI came back with multiple white spots on my brain which I was told could be one of the following 1) an infection 2) old severe brain injury 3) old stroke scars 4) early stages of MS.  I have never had a severe brain injury, so we know that's not it, I have no idea if I have had a stroke (I'm 38 years old and extremely healthy).  As far as I and my parents know, I have never had any type of brain infection that has been detected or treated.  It's hard to determine if I'm experiencing the 'normal' symptoms since I've been blind in one of my eyes since birth (deformed optic nerve) and the disease hits the optic nerve pretty hard and I can't experience double vision due to the monovision.  My coordination and balance has been getting worse in the last few months, but I didn't think anything of it, just me not paying attention since I'm blind in one eye.
 
I have always had intermittant right side numbness, however this morning something new happened, where just my right toe went numb and I immediately felt like I could throw up ( the kind of upset stomach of severe pain, although I had no pain ).  I've had the flu shot, so I'm not thinking flu, it was just very weird.  The right side of my face continually goes numb, but usually no upset tummy with it.  I have my spinal tap scheduled for Wednesday 12/27/06, so we'll see what that brings. 
 
All this terminology is new to me, theLight as well as other members mention 'exacerbations', when I have the numbness attacks is that considered an exacerbation or is it when I am so tired I can barely walk? confused
 
I'm still very concerned about my multitasking skills that are going down the drain.  A couple years ago I was extremely good at multitasking and I have been getting worse and worse at it.  This past year, I can't concentrate and I can barely do two things at once, not good for someone in the IT world and going to school full time.  Carrying on imprompteau conversations is very hard for me as well, getting harder this past 6 mos, I know what I want to say, but can't form the words properly, so that is very frustrating.
IF this does come out that MS is in my future, does the meds help put things back into perspective or is this just something that I need to figure out how to overcome like the rest of you? 
 
Thank you all for your words of wisdom!

tropical dreams
Regular Member


Date Joined Sep 2006
Total Posts : 76
   Posted 12/22/2006 8:01 AM (GMT -7)   
Hi Denda,
Hang in there, I know it's hard. Before I was dx I was so frustrated, couldn't think, couldn't do more than one thing at a time,always off balance (still am) cried all the time, forgot the simplest little things, not good for a lab processor, like you in IT multitasking is a must. After dx in aug, doc put me on betaseron, believe it or not my thinking became clearer after a while although I still struggle with it along with my leg numbness and pain. It can get better, I am also on an anti depressent, which is not working these last few days but I guess I'll snap out of it.
I know conversations are hard, once my co-workers were told that I was dx with ms they understand and help me out in our conversations, me the chatterbox needing help is soooo funny. Anywho, hang in there and keep us posted on your outcome and good luck with your spinal tap.

Hugs
***Carla***
 
EVERY DAY I WAKE IS A NEW POSITIVE BEGINNING
 
Dx 08/02/06 MS
Betaseron
Citalopram
Gabapentin


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 12/22/2006 9:47 AM (GMT -7)   
 
I have not been officially dx'd yet, but my neurologist has told me that it's a pretty good possibility that I am in the early stages of MS.  I went to her for rt hand tremors, random rt side numbness and random body tremors.  I had an EEG which came back normal but showed signs of possible minor seizure activity, so since I have migraines as well, I am now on Topamax, should be on 100mg/day, but 50mg/day is making me dopy, it's helping so far, so we're hoping I don't have to bump it up to the 100mg.  My MRI came back with multiple white spots on my brain which I was told could be one of the following 1) an infection 2) old severe brain injury 3) old stroke scars 4) early stages of MS.  I have never had a severe brain injury, so we know that's not it, I have no idea if I have had a stroke (I'm 38 years old and extremely healthy).  As far as I and my parents know, I have never had any type of brain infection that has been detected or treated.  It's hard to determine if I'm experiencing the 'normal' symptoms since I've been blind in one of my eyes since birth (deformed optic nerve) and the disease hits the optic nerve pretty hard and I can't experience double vision due to the monovision.  My coordination and balance has been getting worse in the last few months, but I didn't think anything of it, just me not paying attention since I'm blind in one eye.
 
I have always had intermittant right side numbness, however this morning something new happened, where just my right toe went numb and I immediately felt like I could throw up ( the kind of upset stomach of severe pain, although I had no pain ).  I've had the flu shot, so I'm not thinking flu, it was just very weird.  The right side of my face continually goes numb, but usually no upset tummy with it.  I have my spinal tap scheduled for Wednesday 12/27/06, so we'll see what that brings. 
 
All this terminology is new to me, theLight as well as other members mention 'exacerbations', when I have the numbness attacks is that considered an exacerbation or is it when I am so tired I can barely walk? confused
 
I'm still very concerned about my multitasking skills that are going down the drain.  A couple years ago I was extremely good at multitasking and I have been getting worse and worse at it.  This past year, I can't concentrate and I can barely do two things at once, not good for someone in the IT world and going to school full time.  Carrying on imprompteau conversations is very hard for me as well, getting harder this past 6 mos, I know what I want to say, but can't form the words properly, so that is very frustrating.
IF this does come out that MS is in my future, does the meds help put things back into perspective or is this just something that I need to figure out how to overcome like the rest of you? 
 
Thank you all for your words of wisdom!
Welcome to the forum!
 
Another thing to consider with the "white spots" on the MRI -- you said you have a history of migraines? Migraines can also cause white spots -- or lesions -- to appear on an MRI, as can seizures.  So it's important for the neuro to rule out those things -- or decide that they are causing the lesions, and not possible MS.
 
As for your nausea -- even though you've had a flu shot, that doesn't mean you can not get the flu!  There are all sorts of viruses that are attacking folks right now, and the flu shot does not protect entirely against any of them.  It may just be that you have a mild case of flu. Otherwise I can't envison any connection between a numb toe and nausea!
 
Exacerbation means an intensity of current symptoms, or a sudden escalation of disease, with new symptoms occurring.  Some folks use "exacerbation", others use "flare", to mean the same thing.  The numb toe thing would be an exacerbation if it continues for more than 24 hours, and is a new symptom for you. 
 
The fatigue is a chronic condition.  MS can bring about fatigue, but there are lots of other disorders that can have that as a symptom too.  If you are experiencing some sort of seizure, the seizures can come with fatigue.  You might also ask about getting a sleep study done. You might be dealing with sleep apnea -- which can seriously affect your health in a lot of ways. You'd need to get a sleep study done to see if you are sleeping soundly through the night, getting enough deep sleep, that sort of thing.
 
The MS meds that you hear many of talking about -- Copaxone, Rebif, Avonex, Betaseron (sometimes called the CRABs) -- wont relieve any of these symptoms, (nor will they cure MS), but will slow the progression of the disease.  If indeed you do have MS, you'll need to talk with your doctor about perhaps going on one of them. There are meds for some of the symptoms (like the fatigue), but they don't always help every person, so there will be a period of trial and error to figure out what might work best for you.
 
Good luck with your spinal tap!  Keep us informed as to how it goes.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Denda
Regular Member


Date Joined Jun 2006
Total Posts : 329
   Posted 12/22/2006 11:02 AM (GMT -7)   
Thank you both for your replies! It is such a relief to know if something like this does end up coming into our lives that you all are out there for moral support. I really like my dr and she explains things pretty well, I just need to remember to ask things and if I don't, I can call and she does call me back with answers, so that is always nice.

Thank you for the explanations, I feel stupid asking these types of questions from anyone, let alone my dr, it's kind of like 'hey please stop trying to heal that gran mal (sp?) seizure patient in your office and tell me why my big toe is now numb and my tummy upset.' I feel like such a baby. I never used to have to go to the dr but once a year for bronchitis and the occaisional migraine episode! 2 years ago, had to have a hysto, now the whole body is going to crap! :o)

So white spots and lesions are the same things? I'm not telling my family that. That word will freak them out. Hopefully everything will come out fine next week. I definately will let you all know. I can't thank you enough for the information you have already given me.

Have a great holiday!
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