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Posted 5/31/2009 9:25 AM (GMT 0)
Hello everyone,

I was hoping to get answers regarding MS from people who are actually experiencing it.  I am 31 and suffer from anxiety which has been multiplied because I am worrying about MS.  I know this board cannot diagnose me, I am only hoping for answers to questions about the disease.  I think with these answers and talking with my GP, I can put this fear to rest. 

2 1/2 years ago, 6 weeks after the birth of my 2nd child, I started feeling a very dizzy/drunk feeling.  I was a little wobbly when walking and thought I felt my left side of my boy (face and hand, foot) feeling slightly numb.  I panicked and went to the ER because I was worried I was having a stroke.  Nuerologist on call immediately said MS can appear after having a child (I think something with hormones?) and attending physician ordered a brain MRI to rule out stroke.  The MRI came back clean and I passed all of the other tests in ER. Neuro wanted to admit me for observation but with a new baby along and nursing (baby couldn't stay) I decided to go home.  Dizziness went away about 2 days later and when I say my GP she said what I experienced sounded more like a panic attack not MS.  Since the Neuro said MS I have become obsessed with this disease and cannot let go of the fear that I may still have it even though my MRI was clean.  Mostly because when I have something weird happen with my body, almost always in the possible causes section on internet searches, MS is always there which keeps bringing me back to the ER visit and the anxiety begins all over again.  I constantly have this feeling like "what if I do actually have it but it was too early and did not detect a lesion on the MRI?". I know this must sound crazy to think this.

I also had back surgery 2 months ago.  I wanted to mention that because I know that some of the same symptoms can occur with MS and Herniated Discs.  I had a lumbar MRI 3 months ago and no lesions were found there either.  I saw a chiropractor to help with the back issue (before the MRI and before I knew I needed surgery) and he did a neuro exam.  I have developed SUPER fast reflexes and during a few of the balance on one foot excercises, I had trouble on one side.  He said "we see this a lot with MS" and again begins this viscous circle.  Just when I think I have myself convinced "no, I don't have this" I have a doctor or website mention "MS".  That is why I can't let this go :(.

During this 2 month recovery from back surgery, I have started experiencing things like MAJOR anxiety (it was only mild to moderate before surgery, now I am seeing a therapist...sigh).  The most annoying thing happening to me now is muscle twitches in my right forearm that can spasm every 10-15 seconds for, recently, as long as a day straight.  I do not have vision problems, my balance is pretty good and I do not have any numbness or tingling. When I woke up from surgery at the hospital, I had my left arm muscle (between elbow and wrist) start contracting every time the leg bands (to prevent blood clots) would go off.  This was gone the next morning and the surgeon did not know why this was happening.  I panicked (shocking...I know) and started wondering if this was "muscle spacicity".  In the same arm (only since the surgery) My pinkie and ring finger have a slightly numb feel that comes and goes.  Surgeon said this could have been from the way I was positioned on operating table and said it could be Cupital Tunnel Syndrome.  A woman I work with has a family member who has been diagnosed with MS and when I asked her what her first symptoms were she told me her only symptom was a finger going numb. 

That being said...Here are my questions about MS......

When you have a lesion, will this cause a symptom where the nerve is affected on the spinal cord and the symptom will appear on a certain part of the body?  How long does the symtoms usually last (days, weeks, Months?)  I would think it would last as long as the lesion is present on the spinal cord.  Do the lesions heal and then the symptoms go away?

With MS, is there at least one major indicator like Vision problems, balance problems, and numbness that would be present? Would this stay consistant and not come and go in a days/weeks time? 

How severe are the symptoms typically (just mildly annoying or debilitating?)

Would any numbness that I would feel be complete numbness or partial?

Would any incontinince associated with MS be consistant, not just random? 

Thank you to anyone who will reply to this.  about 90 percent of me believes that what I am experiencing is due more to anxiety and not MS.  But the other 10 percent just can not let this go after 2 doctors have mentioned this disease with me.  Again, I am hoping that answers about this disease from people who experience it will calm my fears once and for all.  When you reserch MS online it is not clear to the severity of symptoms and the symptoms can mean so many other things too. Do I have memory loss and fatigue...YES....but I also work 40-50 hours a week, juggle 2 young boys have a husband who works more than me, and can't sleep because I am worrying so much about having MS? LOL  My GP has recently left the state and I have a physical in September (the earliest they could get me in, UGH) with a new GP.  So, I will be discussing this all with him then and getting his opinion if I need to see a Neuro.  In the meantime, here I sit wondering.

I am going back to bed now but hope that tomorrow I will sleep much better having answers!!

Thanks Again,

JB

 

Posted 5/31/2009 4:03 PM (GMT 0)
Hi JJ,

Well it took me about a year to read your post....just kidding.  You have a lot going on here.  First, let me say, welcome to HW.  I am very glad to see that you have also posted on our anxiety and panic board.  You will gain so much support from HW.  You are obviously bright and well educated.  You have already mentioned all the areas I would have hit on.  You have identified anxiety as a problems as well as stated you know that we can't diagnose you. 

You have correctly stated how difficult it is to identify the cause of fatigue and memory loss while being a working mom.  If we had been talking face to face, I would have been saying," yep, yep, uh huh, and yep."  You seem to understand the nature of diagnostic medicine, anxiety and MS. 

First, let me say that there is no way I can completely set your mind at ease.  I am not a doctor, as you know.  You are correct in being concerned that two doctors have mentioned MS.  Unfortunately you are also correct in questioning, "could I have MS but it is just too early to find on an MRI?"  We indeed have had members that have had clear MRIs then go on to have lesions show up after a few months or years.  What you can probably say is this, "I don't, at this time, have MS."  And really, that is what a clear MRI means for anyone. 

You are right on with all your symptom junk.  My symptoms last because I have fairly large lesion that are permanent.  Most of the time MS is "relapsing/remitting" type disease.  I can be in remission (as I am now) and the symptoms I have are "residual" or from old lesion damage.  If I flare, then I add to that symptom load.  On occasion a small lesion might not cause symptoms or might even heal on it own.  After a flare, there is always a bit of re-myelination that occurs.  Your brain is also amazingly good at finding new neural pathways to do things that might have been lost from lesion damage.  The only part of the CNS that is not good at new neural pathways is the spinal cord, brain stem and cerebellum.  Those tend to be more serious sight lesions.

I feel compelled to address your anxiety to the best of my ability.  Please stop searching the internet with your symptoms.  You are going to make it worse!  I have a little anxiety myself and can relate, albeit my anxiety manifests itself as OCD more than anything.  Please know this, MS is a terrible disease, but (and this is my opinion) you can live with it.  For the vast majority of us living with it, it does move slowly.  It is not fatal.  It cannot take away your joy for life unless you let it.  One thing I learned early on with MS, is that people with MS say this over and over, "if only I could stay this way, I would be fine."  This leads me to believe that the hardest part of MS is adjusting to the new you after a flare.  This quote has been said by MSers with mild symptoms as well as MSers in wheelchairs.  It seems that we as humans have an unbelievable capacity to adjust to new challenges.  It is that adjustment period that is so stressful.  Once adjusted, we ususally carry on pretty well. 

I am trying to give you the worst case scenerio (as if you might develop MS) so that you can see that this is not a disease that ends your life or your happines.  It is a disease that will challenge you greatly.  I hate having this disease but it does not take my joy.  I will live without limits. 

JJ, your post has touched me.  You are erudite and perceptive.  I promise you this, whatever you have, YOU will be fine.  You have what it takes to manage your anxiety as well as any other challenges life throws at you.  Try to take a deep breath and relax.  Enjoy the wonderful gifts you have in life, especially those children!!! 

You are welcome to post here as you wish.  I would love to hear how you are doing.

Posted 6/2/2009 12:40 AM (GMT 0)
Thank you, Gretchen, for your response :). It was very much appreciated in my search for answers. I do not frequent this board enough to read your posts to others but from the few paraghraphs that you replied to me, you sound like an uplifting wonderful person and this board is lucky to have your guidance!!

Just so that I have this correct, for the most part MS symptoms come and go and range in severity. When you have a bad flare up, a little bit of the symptoms stay with you permanently depending on how bad the damage is to either the spinal cord or brain. Then, you just adjust to the "new you".

It is so hard to know if what I am experiencing is simply from my severe anxiety or perhaps the early start of MS. I am following up with my new GP in September and hope that I will have more answers then.

Again, thank you for replying to me.
Posted 6/2/2009 1:03 AM (GMT 0)
Yep that is pretty much the story.  MS is terribly variable.  A few people will have a very benign form of MS; and after a flare, they might return to a normal baseline.  Most, however, have residual symptoms that they deal with.  Those residuals accumulate over time as flares occur.  As residual symptoms accumulate, so does the possibility of disability.

There are four types of MS.  There is relapsing-remitting (RRMS); the disease lays low then flares up.  There is primary progressive (PPMS); marked by a steady progression and worsening of symptoms but not the acute flares associated with RRMS.  There is secondary progressive; this is when after having RRMS, one transitions to a more progressive form marked by steady progression.  Then there is the very rare progressive-relapsing (PRMS); this is a very progressive form that is marked by both acute flares and steady progression.  

 

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