Symptoms of MS?

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Bally
Regular Member


Date Joined Oct 2005
Total Posts : 24
   Posted 3/20/2007 9:52 AM (GMT -6)   
I have an appt with my Neuro on the 26th to discuss new symptoms that have appeared. Needless to say, I am terrified! I have been "ill" for over two years now and so far no diagnosis. This illness definitely waxes and wanes with periods of remission and exacerbation. It started with horrible fatigue and malaise, then migraines, then disequalibrium then severe neck pain, and so many other symptoms to list sad Within the last month... my neck has become so weak that I cannot sit or drive without resting it on a pillow behind my head. Also, I have noticed that I am having major weakness in both of my legs. It's so hard to stand or even walk for that matter, especially up stairs! I have been to every "ologist" there is and so far they have NOT been able to diagnose anything. I've seen an Endocrinologist, Cardiologist, Infectious Disease, Rheumotologist, and my Neurologist. They have all suspected Lupus, MS, Lyme and as a last resort Fibromyalgia. I have a weakly positive ANA (titer 1:80), but ALL other labs they have run are normal. I did have a brain MRI about 2 weeks after this all started in '04 and it was normal, also a Spine CT which was normal. I am only 28 years old, and it's so frustrating to be so ill and the Dr's have no answers sad Especially when I have NEVER had any health problems before. Every morning I wake up and wonder "will this be a good day or a bad day"? My life has been severely altered and effected and I just wish I knew WHY. What this illness is. Does this sound like MS? Is this how it starts? Looking for advice and hope.
Allison (28)

~DX'd Basilar/Complicated Migraines 10/05
Is it Lupus, MS, Lyme, or Fibro??? Still working on a diagnosis.

Treatment: Midrin, Amitriptyline (20mg), Motrin 800mg, Magnesium 400mg, Malic Acid 600mg, B6, B12


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 3/20/2007 10:12 AM (GMT -6)   
Hey Allison

Wow, i'm sorry. It's been a long time for u, but u'r doing the right thing...pushing on. It is scary. Not knowing what u'r body is doing and seeing that the doc's can't figure it out either. I can tell u that some of the symptoms u list here definitely could be ms, but as u know they could be other things too. I"m not too sure of the neck pain tho. U say it's been since 04' that u had an mri done. Why not request updated mri's of u'r head and neck and ask that they be done with and without contrast. If u'r still having these probs this long after the first ones then it'd prob be prudent to update them. MS is different with each person, but as i'm sure u'r aware, there do seem to be some 'classic' symptoms. Fatigue and weakness are two very good examples. Keep pushing on and don't accept the 'i don't know's' if u know something is wrong. U deserve some answers and tho it may take some time...oftentime a long time...u should be able to get them if u just keep going. We're here...lean on us and we'll help u get thru this all we can. There are many here...myself included...who've been on this roller coaster for awhile and understand exactly how u feel. U'll get thru this.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


KAS1
Regular Member


Date Joined Feb 2007
Total Posts : 161
   Posted 3/20/2007 1:25 PM (GMT -6)   
Hi Alison,

your post almost brought me to tears. As Rhonda says, you really are not alone, I could have been reading my own story....what you've been through is so hard. It's frustrating and heart breaking to not have the answer....but hey, let's hope that the neurologist will have some more ideas for you on the 26th!

Thinking of you lots!
KAS

P.S. would be interested to know more about your neck pain.....

Barbieob
Regular Member


Date Joined Apr 2006
Total Posts : 65
   Posted 3/20/2007 4:47 PM (GMT -6)   
Hi Alison

I Just wanted you to know, I know how you are feeling. I started with the same sort of symptoms as you and have had all the same tests and DRs. I am so normal its not funny acording to the tests. I too had a slight positive ANA.
and also wonder every day what is going on in my body and why cant they tell me what this is.
I am seeing a new neuro on the 28th , its been 18 months since all my symptoms started and hope I have more luck this time round finding out whats going on. I would rather just know and deal with what ever it is because the not knowing drives me crazy.

Good luck for the 26th I hope all of us here who are in Limbo get some answers soon.

Regards

Barbie

Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 3/20/2007 6:19 PM (GMT -6)   
Hi Allison,
 
    So sorry, you've been having problems for so long with no answers.  It's very difficult when you know something is not right but yet all the tests keep coming back normal.  Frustrating too!  Try to hang in there.  I know its very hard to do but keep trying to push forward.  How are you doing symptom wise?  Have you found anything to help with your symptoms at all?  Good luck with your appointment and I hope you gain some direction from it.  With your MRI's three years old, they might want to rerun them.  Not sure how long your labwork was done but if that's been a while they might want to do that again too.  Let us know how you make out.
 
Kimber
 
Co-moderator for Multiple Sclerosis
 
Allow Healing Well to continue to help others, clink link for details

MS Buckeye
New Member


Date Joined Mar 2007
Total Posts : 1
   Posted 3/22/2007 7:30 AM (GMT -6)   

Allison,   Like all the others who have replied, I sympathize and empathize with ya; your story reads just like mine.

Some advice to get you closer to a diagnosis:

Keep a journal of all symptons, no matter how strange or seemingly "unrelated".   This does a few things- it allows you to find triggers to avoid, track trends, and lends a great deal of credibiity to your story when presented to medical professionals.  In my journal I also keep a score each day, 1-10, am I chair bound or am I walking normally?   Can I feel my feet like I used to, or are they tingling, or are they dead weight?   Each "level" of every sympton merits a certain score.  Bring this journal, as well as a list of your current prescriptions and OTC drugs/supplements/herbals with dosages to EVERY appointment.   Also, when possible, submit a list of new symptoms and any questions you might have, a day or two PRIOR to any medical appointment.    This allows the doc to prepare in advance if research is required, and it prevents you from forgetting something important.   My neuro actually leaves these in my file so that we can re-visit items as needed over time too.

Find an specialty center (like an MS Center or Institute) near you.   You may have the world's most competent neurologist but if he/she doesn't have experience with MS, (or whatever your gut tells ya you have based on lots of internet and library reseach) you may not be getting the best care/diagnoses/treatment.   Once you do get a diagnosis, it really helps to befriend the person who sets appointments and can get ya in when needed with little notice. You also need the RN or LPN or NP or whomever  does the doc's work 'behind the scenes' to know you and your case.  Having a person who knows YOU as a person and not just a case file helps, especially at some of the bigger centers where people drive hours to be treated and the actual doc-to- patient is out of control.

Keep records.    Every blood test, every MRI...keep a copy, and when you get to any appointment,   leave them in your car but be prepared to go get them, in case the results didn't make it from office to office, etc.  (Ask for MRIs on disk, like a CD or DVD, much easier than those silly films. And be sure your MRIs are done with the gadolinium contrast injected.)

Lastly, hang in there!    I know it is so terribly frustrating to feel like life is on hold while you putz around looking for some answer that you are probably not gonna like anyway!  Focus on the things you CAN do!  And while you wait for a diagnosis, treat the symptons.   There are drugs out that that help very much with fatigue.  There are antidepressants available to help you get thru this period in your life.  There are helper tools like canes too.   (I hated the cane idea at first, until I found a really cool one that folds up and looks like it might contain some James Bond like weapon!) If your docs act like treating the symptoms is crazy, ask them why they feel your quality of life should suffer while they scratch their heads trying to diagnose.  

Keep us posted.   Best of luck to you, I'll keep you in my prayers. 


Go Buckeyes!

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