tired of the whole ms thing

[marymoto]

feeling deflated and hoping to move forward from my diagnosis of benign ms my recent mri did not show much but maybe my neuro can bring in the old mri from 2006 that showed the lesions in the pons. ha

[marymoto]

yes they definetely have me hooked up i dont take all thes anti inflammatorys at once but i cycle through them.yes my gp says i have ms he is the one that sent me to the neuro for ms.the neuro beleives i have something wrong. i am not going to move my appt. up right now  as i have to have someone drive me in now because my hands cramp up on the steering wheel.

[tonyad]

  WOW!  They have you hooked up!  At least they ARE treating the sx's which is a good thing because that show that they DO believe something is gpoing on!

   I would call weekly or Bi-weekly to check for cancellation appt's so that you can get in there sooner if possible.    Nine times out of ten.....you will be able to get a sooner appt.

Fingers and toes crossed  :)
~Tonya

[marymoto]

my next appointment is in july. i take gabapentin,baclofen,toradol,diclofenac,indomethacin,and i take alertec for the fatigue.

[tonyad]

    Hi Hun,
Sounds like you have a good "Plan of Attach!"
Good for you.   between now and then I would jot down little notes /reminders to ask as well as any symptoms (either same ones or new ones) and any questions you want to ask / or need to know...

    Glad you are AHEAD of the game and already have ruled out several mimics.
When is your next appt? Do they have you on any meds now to treat symptoms?

Take CVare,
~Tonya

[marymoto]

hi Rendean how are you this evening? i will see what my neuro thinks of the mri and see what he decides to do next.i am hoping that he continues to follow me over time. yes i do feel i need the spinal mri as i have numbness in the bottom of my feet and numbness in my legs,i also have issues with walking and sometimes my feet dont move properly,i also have spasticity in my legs.i have lots of pain in my legs as well ecspecially at night. i have balance issues as well.tingling down my left arm i think i have lhermites but it is not there all the time only when i start out in a relapse then i notice a lot of sensory things happening.

[marymoto]

hi tonyad how are you today?about the negative mri i will see what the neuro says about it and what he decides to do next. i still have some time before my next appointment.i would like him to look at  the films himself and give his opinion. i will see what he suggests i do next. i know that he needs to mri my cervical spine and the thoracic.he did tell me in february that he thought i have benign ms or the begiining of ms.i have already ruled out most of the mimics last year before seeing this neuroligist my b 12 is fine,i do not have lupus or lyme,and my thyroid is fine. my gp already has ruled out all of the other possibilities.it is a long  wait to see another neuro but i will see what my gp thinks.

[tonyad]

  We have to keep in mind that a negative MRI does not rule OUT MS.
An negative LP can NOT make a negative dx of MS for you either. As well as an VEP and other test. Some here on this Forum have a dx of MS with a Negative MRI and some NEGATIVE LP!

    Now, you can "RULE OUT" mimics through some blood work such as Lyme. B-12, Thyroid problems. and an array of other possibilites. Again, this is ruling those OUT.

    As the Health Pages (top upper right hand corner) and QUIX has mentioned as well as the MS Society, MS is a Clinical dx...These test are there to possibly help what is suspected, but can not be used as a sole diagnostic tool.

    If you have a doctor who is doing this then I would see someone else! Some one that knows the diagnostic Criteria and FULLY understands it as well as goes by it.

    As far as using the word "Benign MS"  I posted that info from an article to another post a couple months back...I will try to find that and re-post it.

Take Care,
~Tonya

[rendean]

Thank you for the kind words.

As for the LP and other MRIs, I'm not sure. Do you have any symptoms that would be directly related to the cervical spine like Lhermitte's sign or to the thoracic spine such as problems with motor skills such as walking or MS hug?

The LP is only good if your neuro agrees that a negative LP has no meaning and a positive LP is more evidence of MS. Since you've been labeled "benign MS" , I'm not sure he/she would take that stance regarding the LP.

I was labeled "benign MS " initially and sought out other opinions. I also had what was thought to be a MS mimic (Sjogren syndrome) so that muddied the waters as well.

I wish you well. I truly know the frustration you are experiencing. Hang in there!

Ren

[marymoto]

hi thanks for the message you have a way of speaking that gives hope and undetrstanding thankyou.yes i had two lesions in the pons in 06.my vep came out normal do you think they weill do an lp next or a cervical and spinal mri?

[rendean]

To Mary and Steph: I am sorry you both are without a definitive dx. I remember those days and the frustration I had during this time.

Actually, time was the only thing on my side, after 5 years of symptoms which gradually began to worsen, I was finally dx by an older neurologist at an academic teaching hospital.

He had been practicing neurology and dx MS before the MRIs and was confident n dx me after all mimics were ruled out. Here's hoping you both can find a confident, experienced neuro who's willing to get off the fence and make a decision and dx.
BTW, I only have 2 "MS" lesions, negative LP, VEP,SSEP and minimal findings on initial exam so there IS hope.

Ren

[steph74]

Hi Mary,

I (and many others) can totally relate to what you're going through.  For myself, after 18 months of looking it ended up being best to take a LONG hiatus from the  search for a dx/understanding.  Things leveled off and I was able to ignore the smaller sx (including months of the MS hug).  I made a deal with myself that if things ever got bad, I would start looking again. 5 years later, I started having occipital neuralgia and TN.  Then bilateral TN, then a mild case of ON...  I started seeing a new MS specialist.  She found lots of other neurological problems that I hadn't even noticed.  But, my MRI is still clear.

So now I'm just in a holding pattern.  She is treating my sx (including solumedrol when the flare is bad) but no DMD.  I wish I could say you'll get an answer within X amount if time, but there's just no guarantee.

Good luck.

Stephanie

[rothexl]

That sounds very frustrating, do you need more "evidence" to be put on a DMD?

Best of luck and hang in there!

Rike