Frustrated- update

[Evie7133]

Hello everyone,

I had my third Neuro consult yesterday and the doctor looked at my old MRI reports and notes, checked a few reflexes and said that he doesn't think my problem is neurological in nature, LOL.  He then referred me to a rheumatologist across the hall that took blood work to check for RA, etc.  

She seemed surprised that he did not do an EEG/EMG when considering my symptoms, so she is sending me for one of those as well.  I honestly don't know what to make of this whole process...I tried almost everyones suggestions and he did not even look at ANY of the films I brought, nor did he keep it to review for a later date.  Is this right?? LOL.   I honestly don't know what to make of this...If I don't laugh about it, I will cry.  Thoughts??

E :)

p.s:  again, thank you to everyone here for the fantastic advice and moral support...it means more than you know <3

[Sidesteps]

Evie,

I am having similiar issues. My symptoms also started to be chronic just over a year ago. They started out with an atypical initial presentation of myoclonus, then difficulty swallowing, then fasciculations, balance issues and my full system meltdown last fall.

My residual issues are mostly visual, numbess and pain on my face (like you I wondered and asked if I had bells palsy), balance and coordination issues, myclonus/fasciculations, tremors, right arm/left heaviness and stiffness. Fatigue.

The doctor's I am encountering seem to have problems reading the MRI's themselves then discounting my concerns with "all the tests are normal. I am not sure what is going on but it is not MS." I'm turning into Alex and saying when they don't look at the cd's themselves and aren't willing to go over them with you then move on.

You know your body, believe in yourself and keeping searching for the answer. Sending you strength.

[HVAC]

I had to go too many Neurologists until I was taken seriously. When they will not look at cd's or films I go to another.

Alex

[LisaJF]

You're most welcome.

Depends on what kind of pain you're experiencing.  If its burning, tingling, etc. Lyrica, Neurontin are the most popular.  As your doctor if they will prescribe that for you.  Lyrica and Neurontin can be used in conjunction other medications for maximum pain relief (ie: Cymbalta).

Oh you definitely need to figure out what is going on for yourself as well as your family.  But you come first.  Can't care for family if you're out of commission right?

Hop on the calling the MD for those medications mentioned.  He may want to "see" you first before prescribing.  If that is the case, make it as soon as possible (your office visit).  There's no time to waste to alleviate pain that you don't need at this time.

Lisa

[Evie7133]

THANK YOU SO MUCH!!  I have to figure out what is going on...if not for myself, certainly for my four kids and husband that deal with my symptoms.  

Does anyone have suggestions on pain relief??  I am currently maxing out the dose of Aleve...or does anyone know if I can combine with something else like Tylenol?  The pain in my legs is EXCRUCIATING!  I cannot take more than a few steps before the limp begins and the pain intensifies :0(

[soulties3]

I agree with Lisa no one can tell you about your body but you and also you can speak up and tell these doctors if you feel they not doing something right or not listening to you.  My pet peeve is when you get people who think they know everything or think there above you because of there status that don't make anyone smarter than everyone else,because some of the most smartest people can be the dumbest also. So in the meanwhile read up on issues you know you have and you can suggest test you want done remember you kicking out your money and going through these issues not them. Hope you can get that right doctor for you and they can be able to find out what's going on and straighten it out,good luck.

[LisaJF]

Hi Evie,

I've read some of your earlier posts to gain some perspective on what you've been experiencing.  You have quite a list of neurological symptoms.  I can understand why you came here and are investigating as to why you are having these symptoms on and off for two years.  

I can't even imagine how frustrating it is to go to a Neurologist who doesn't even look at your MRI images and just reads the report?  That in itself says to me "move forward to the fourth Neurologist".  One who knows what they are looking at in MRI images and compare.  Dissemination is space and time is critical as far as I'm concerned and clinically, you appear to fit.

I know that MS is the diagnosis of exclusion, therefore, everything else needs to be excluded.  (Such as the rheumatologist, EEG/EMG).  Follow through on that.

One thing I realize is to trust your own instincts.  You above all, know your body and what is and what is not normal.  Far too many Neurologists would like to pass "psychogenic" issues for the explanation of symptoms.  Yours goes beyond that.

I can understand the feeling of wanting to laugh, because if you don't, you will cry.

I wish I could extend more educational input and expertise, but I'm not one to do so.

I would, if I were you, to continue onward with your search for the right Neurologist.  There are plenty here that have been through many until they found someone who actually listens, actually cares and actually does something about it.

Lisa