New to Forum: Sometimes I wonder if I really have MS. Final Installation

[meregoddess]

Then I developed a new problem of tripping over my feet all the time.  MAJOR tripping.  Snowball tripping...trip over one foot, then the next, etc. etc. until I finally stopped when I ran into the wall.  (Luckily so far, there has been a wall and I haven't had to stop myself by falling on the ground) I became tired again.  The pain returned in my feet and legs.  Did I mention I was tired?  I mean TIRED.  and the cramps?  OMG the cramps were at times debilitating.  My knee started giving out more, but still not as bad as it used to.  

My neurologist  put me on a solumedrol treatment.  (They had done that before when I first presented symptoms and gawd I loved that stuff.  For the first time in 2 years I felt normal.  I had forgotten what it was like to feel normal, and didn't realize how far from the norm I had traveled). The neurologist  took me off the copaxone, said it wasn't working, and that I now had a new symptom  "foot drop."   The reflexes in the backs of my feet no longer seemed to work.   I am now taking Rebif 3 times a week.  

After my 7 hour drive to see the MS specialist  (I did mention he was a Nazi dr?), where I wound up seeing the Physician's assistant  who told me that "Your neurologist is doing what our Nazi dr. would do, so I wouldn't change anything, keep doing what he's told you and come back and see us in October. The Nazi Doctor won't need to see you today.    This was April, about 4 months after they started me on the copaxone, they knew I was having new symptoms, and the Nazi doctor couldn't take time to check me out. (Maybe he knew my husband was Jewish...C'mon, don't get offended.  It's just a joke  *wink*)    Needless to say, I'm scheduled to see a new MS specialist on October 20th, and I won't be seeing the Nazi anymore.   He never wanted to see me anyway it seemed.......

My neurologist wants me to go see some kind of orthopedic specialist or something to have a "neuro" brace of some sort that will send a painless electrical shock to my feet to make them lift so I won't trip anymore.  Of course there is a very serious chance that my insurance won't pay for it...........still working on that one.  I'm going to check with my new MS specialist before I go that route.  

Well, to make the long story shorter......uh, is that possible?  *thinking*   Let's get to my REAL question.  

Sometimes I wonder if I really have MS and I'm not being treated for something else.  I have no lesions they say on my brain or spine, although my brain MRI did say  "Small gliotic focus within the right frontal sub cortical white matter.  Minor symmetric perifrontal white matter changes.  Largely symmetric periatrial T2 hyperintensities and with a left periatrial site of cystic encephalomalacia."  (And please, don't ask me what it means.  I don't even know for sure what allegretto means because all the musicians keep arguing over the definition......)

I don't MIND having MS if that's what it is.  But does anyone think there's a LEGITIMATE  chance they're wrong, and I could have something else?  If they had definite signs on the MRI, instead of two different opinions I would feel more confident of their diagnosis.  I do have the OTHER symptoms associated with MS, but could they be associated with something else?  

Thanks for letting me ramble, tell my story.  I've taken all this in good stride, kept a positive outlook, but it seems kind of more difficult lately for me for some reason.  I'd really be happy if I could just walk normally, not be tired anymore and could THINK.

Suppose I'm wishing for too much?

Thanks in advance for any and all replies.  It's nice to have some support.

Sincerely,

meregoddess

*******************************

I am merely a woman with delusions of grandeur, coupled with a severe inferiority complex.......

[Salamander2]

Your specialist  (the Nazi)  and my doc (Mr. Personality)  must have attended the same medical school!  After reading all these posts,  I am beginning to think that MS is a diagnosis based mostly on neuro's subjective findings which explains why it is greatly under diagnosed.  I would think your diagnosis is a "no brainer" (no pun intended).  My understanding is that a diagnosis is made when a test  (MRI or LP) is positive and you are experiencing symptoms.  This is over simplified but you get the picture.  I would think it unlikely that you be told you have MS if you don't. The other way around seems to be the problem.  Being told you don't have it when you do.  Good luck in your search for the truth.

Blessings,
Sally

[Deb61]

Welcome!  I really am enjoying your sense of humor--you gave me a good chuckle!  I can so relate to your symptoms.  I have almost all of them (if not all of them).  I'm seeing the ENT tomorrow about the hearing loss and ringing in my ears.  

I also have pain in my feet and balance problems.  I'm also a teacher--middle school special education, but have a degree in music.  My husband is a musician.  

In my opinion, your symptoms are classic for MS.  I can see why the doctor has you on Copaxone.  The number and size of lesions have nothing to do with the severity of the disease.  Many people with progressive MS have fewer brain lesions.  I want to echo what ess says about getting other MRIs on a 3T machine and of the spine (if they haven't done this already).  Brainstem lesions (which it sounds like you may have) are harder to detect--so are spinal lesions.  

My sister and I both have MS--hers is more progressive than mine.  Her brain MRI shows few lesions than mine and they are small (I counted three small spots when I saw her MRI a couple of days ago).  Some of my lesions are about the size of a dime and are numerous.   So, the location has the most to do with the severity of them.  

Hopefully your new neuro will bring everything into focus.   You must really hate giving yourself shots wondering if you're doing the right thing.  I also went through period of denial--especially when I started giving myself shots.  

Nice to meet you!
Deb

[sllowe]

Well hello there!

I see you've gotten many welcoming comments and solid advice.  I'm just saying Hello, and also want to thank you for coming our way.  If I'm reading into what you've said here, I want to share some of my thoughts with you.

I was diagnosed last year, and you know, denial is a heck of a thing.  It was for me anyway. You sway in and out of it. You believe sometimes, other times you don't.  You take your meds, reluctantly. You think, well, the Drs must know best, so I better take them because I don't want to get worse than this.

Sometimes you are lost in indecision, not knowing which way to turn because your not 'thoroughly' convinced.  You think, they must have 'missed' something.  Something else is the matter with me.  I had a stroke, durrnit!  I questioned anything and everything, went to a hematologist, ENT, a 2nd opinion Neuro, etc.  I could go on and on here, but feel you'll understand.

It's just that there are some things in your words that remind me of some of my thoughts, and like the others, I can't say with absolute certain that you "don't" have MS.  It's your right to ride on that sliver of hope that you don't have MS.  It's surely understandable.  

Just wanted to share this with you no matter where your persistence lands you.  Mine did land me in acceptance, though it wasn't a short journey. I'm doing well with it thanks to my friends here.  I've learned so very much and I cherish our forum family.  Welcome to our family, we are very glad to have you.

Looking forward to seeing you around,
-Shell

[OperaMBA]

I can relate to most all of the symptoms that you describe.

I pray for your new MS Specially (not a NAZI hopefully!) to be sympathetic and competent and to help you to improve your situation!   In my vision of a perfect world, Sympathetic beats Pathetic 47-0 at Pathetic's homecoming game!  

Let me tell you that you could not have found a better place to discuss your situation.   You will find nothing but here but knowledgeble and compassion people (with an occassional Scotsman who has stumbled in from the pub to annoy us)....

Welcome!

Richard
OperaMBA

[essdipity]

Or godessly one. Hi there and welcome. I think you'll get through anything with that zany, thinking-out-loud attitude. As to keeping a long post together despite MedHelp limits, it's best to just type in a fairly long amount at first. Then press 'submit' to post, then come back and add to your own thread again. Repeat till you've finished. Perhaps you've already figured that out, I couldn't tell, but no big deal.

If you don't have MS, you sure have every symptom there is! My goodness, it's almost textbook. My only recommendation at this point is regarding MRIs. You should get, if you haven't already, MRIs of brain, cervical spine and thoracic spine, ideally under a 3T MRI setting (explanation in Health Pages). They should administer contrast dye halfway through. That should better settle the question of lesions for the time being, although MRIs don't show everything even under the best technology now available.

Keep reading up on MS, and stay with us.

ess

[Momzilla]

Hi, and welcome, welcome to our forum!  It's taken me about twleve minutes so far just to get this far, because I have severe dyslexia for some reason today.  As our resident physician here, Quix, likes to say, "Dyslexics of the World, Untie!"  With your great sense of humor, I thought you'd get a wee chuckle!

Anyway....FIRST of all, I want to know how to get in touch with your neurologist, because I also have NO lesions, nary a one, and I am undiagnosed, and would LOVE to meet this gem of a guy!  It is highly unusual for a doctor to make a diagnosis like this wihtout a patient meeting certain criteria, and to put said patient on the greatly needed Disease Modifying Drugs.  So good for him!  And good for you!

But, you wonder if these wonder drugs are what you really need, or if they are actually toxic to your healthy body.  Good question, indeed.  Can we tell you this over the internet?  I am here to tell you ....we can't!  (This is our safety disclaimer.  Subtle, isn't it?)

I'm being a little silly.  You have me rolling with your humor already this morning.  The answer is, your doc seems to think you do have MS.  And he has good reason to.  Actually, your MRI DOES say that you have a "focus."  That can be translated to mean "lesion."  In MS, some lesions are found in the frontal subcortical matter.  Hyperintensities are also "lesions," as I understand it.  I don't know what these locations are, the periatrial hyperintensities, but it seems you have lesions there.  Someone will be along to sort this out better than I can.  Especially today.

In the mean time, search around our Health Pages.  There is great info on Lesions by Quix, who is a retired physician.  She's sharp as a tack and puts things into lay terms brilliantly.

The symptoms you have jsut shout out MS.  The foot drop, the feeling of your knee not being there.  It's unusual for a doctor to diagnose a patient on symptoms alone, and your tests (evoked potentials) certainly helped your doc.  I think if you look around the Health Pages and get some feedback from others here, the diagnosis may make more sense to you.

I am sorry about your diagnosis.  It is hard to swallow.  You seem like a vibrant young woman with a fantastic sense of humor.  But, it's certainly not a death sentence, Sweetie.  There's Light at the end of the tunnel here, and we can help you find it!

Lots of love,

Momzilla*

[Heather3418]

Welcome to the MS Forum.  I am an old timer of the Forum and my name is Heather.  If you have quite a bit of history to type out, might I suggest that you go your "MedHelp" page and type it all in a "journal."  Then come back to the Forum with a brief description and direct people to your journal.

I totally understand how the "word limit" thingy on MedHelp can make things difficult when you have a story to tell.  But don't worry about it now with your present posts.  We can figure out that they are tied together.  So don't worry about adjusting them now.  If you have a real long post next time, try the "journal" approach.  I have found it works better.

With all the symptoms that you are describing, I would have felt that they would have seen more on MRI.  I am puzzled by the "cyst" that they saw.  Have they offered any explanation for that?

I have totally enjoyed your sense of humor and glad to see that you still have one, with everything that you have been through.  God Bless you for that.  We need all the humor we can get on this Forum.  Sometimes it helps us through our doom and gloom days to be able to laugh at ourselves.

I hope Neuro number 2 has some better answers for you.  I would like to hear what he has to say about your symptoms.  They ARE suggestive of MS, if all other reasons for these symptoms have been ruled out.  Your doctor's ARE treating you asas an MS patient and at this point, as a layperson mind you; I would not tend to question this diagnosis.  If you feel in your heart that it is something other than MS, then I would ask for more clarification from the doctor's why they are sure this is MS.

Having MS is something we can deal with and treatments for MS get better as the years go by.  We all hope for a cure and a reversal of damage, done by MS, of course.  In the meantime, we have to continue to take the drugs offered, to try to slow this puppy down.
I think your doctors are one the right course, as far as treatment.  I think you could benefit with some physical therapy when it comes to your walking.  Despite having MS, we can still weight train, which helps our bodies overall to handle the outward symptoms that bother us most. Of course, not training to the point of fatigue.

Please keep us posted on your next doctor.  An MS Specialist is someone that deals with MS patients day in and day out and I would tend to follow their lead, rather than a Neuro that only deals with MS every now and then.  Am thinking about making that change myself, even after 13 years since diagnosis.

Again welcome to the Forum and thank you for sharing your story.  I hope that you will feel up to answering some questions on the Forum and lend your personal experiences to others that may be going through some of the same things you are.  We certainly cannot diagnose anyone here, but we can relate to what others are going through and offer much needed support.  It helps to know that you do not face this disease alone.

All the Best,
Heather

[meregoddess]

Yes, I'm talking to myself.

Self, please note to next time type the word "NOT" into the statement in the second paragraph so that it reads " ,,,I would NOT feel the need to practice my keyboarding skills to such an extent."  

Hey self?  Want to try and REMEMBER this time?

[meregoddess]

Hi,

Thanks for the response.  I would have put it all in one post, but having an uncanny ability to type more than 8,000 words in one post put me over the limit this site would allow.  I had to split it into 3 parts because the thought of counting out 4,000 words just so I could put it into TWO posts made my head just thinking about it  : )

I didn't realize I could do that Yvette, I wish I had.  I sincerely hope that in the future I would feel the need to practice my keyboarding skills to such an extent.  I will remember that though, just in case!!

And yes, wobbly, I'm hoping for a 2nd opinion with the new non Nazi neurologist.  Although my local neurologist agrees with the Nazi MS specialist, I'd like to have another opinion from an MS specialist as opposed to the neurologist.

Although my  neurologist here is GREAT, and well informed on MS it would appear, he is just not an MS specialist.  Not that there's anything WRONG with that............

Thanks all

[Wobbly]

Hi there...welcome to the forum...just wondering if you had a second opinion...take your MRI CD copies and reports and ask for a second opinion if you don't feel it's the correct answer for you....

now, that's what I would do...?  

take care
wobbly
undx

[Terrie2008]

Hi Welcome

Oh boy

I can see your dilemma and I would feel the same it will be intresting to here what other people think.

Your post was intresting and some parts had me laughing which is pretty good at 5,56am cant sleep its driving me mad so I have now got another day feeling sick and worn out through tiredness.

Take care.

Oh and the suggestion by Yvette would make it easier.

[vizslagal]

Welcome to the forum.  I am sure the others will chime in soon.  May I make a suggestion to get your whole story under one thread.  It is really hard to keep separate threads together for any length of time.  What you need to do is copy from one thread and reply to your first thread and paste part two and then repeat with final instalation.  

It will really make it easier for everyone to follow your story.

Yvette