New permanent symptom--now 7 years no DX

[tjj3761]

Hi to everyone,

I am now 7 years without a diagnosis, but I have a "new permanent symptom."  I started in late summer to early fall with my right face/lower eyelid visible twitching, which feels as if it goes into my neck, like an underlying spasm/tremor or something.

Now, if I touch my face, yawn etc., my face and lower eyelid start twitching for seconds and then stops.  This has become very annoying.

Before Xmas, I called my neurologist and for the first time he prescribed me Vicodin and Flexeril because I would have such severe spasms in my face with an unexplainable feeling of pain as if my body was on fire.  The only thing that will relieve this is this combination of medications.

I now am going on Friday to see the neurologist once again.  He has been very vague still always saying it is stress, for me not to doctor shop as somebody could hurt me, has said in the past its not MS, but he cannot tell me what is wrong with me.  He continues to treat all my symptoms and wanted to send me for physical therapy in the fall for my right shoulder stiffness.  If I do not have a neuro disease, then why does he continue to treat me?

I am giving him just one more chance.  I am going to be very straight forward with him.  He makes me feel as if I am a hypochondriac.  I absolutely dread going to see him because of the way he makes me feel.  The only reason I have stayed with him is because he has my entire history and it is like starting all over with a new doctor.

Any suggestions would be greatly appreciated....Thanks......

Terri

[tjj3761]

I just wanted to let you all know how my appt went today.  I tried to keep myself calm before I went, but my blood pressure was up anyway.

My neurologist was acting a little better today and not as dismissal.  He looked over all my electronic records from Cleveland Clinic, which of course were all negative.  He asked me why I did not do the physical therapy he ordered, and I told him I have a deductible and would have to pay for it myself.

My eye/facial twitching was very visible for him to see, which was a good thing and it was going on like crazy, but he said it is most likely benign orbicularis oculi fasciculations and said he, in fact, has them too.

He wants to start me on Cymbalta for anxiety I am assuming, do no further tests right now, and see me in 6 weeks.  We could possibly look at testing in future.

At that time, I told him if I could WISH IT ALL to go ahead, I would.  If he knew me, I am not a hypochondriac.  He told me that he has never thought me to be a hypochondriac.  He said sometimes there are things that we cannot see that are going on.  He also said he is not putting me on Cymbalta for fibromyalgia as I do not have that disease.

He was much nicer to me this time as, of course, I broke out crying.  I did not want to do this as I was trying to be strong.

He continues to want to treat me, but WHY?  I can only think there is definitely something wrong with me or he wouldn't.....

Thanks for listening.....

Terri

[tjj3761]

Thanks so much for all of your comments.  I really appreciate them.

I am already not looking forward to going tomorrow, but I am going to stay cool about it.

To answer of few of your questions, my very first extreme onset of symptoms in 2003 was right-sided severe stabbing pain in my face, blurry vision, and then right-sided head to toe body numbness.  

After about a year at that time, my neurologist did not diagnose me to have trigeminal neuralgia, but he started treating me with Neurontin, which was a life saver.  Actually, I guess I kind of diagnosed myself prior to him doing this.

That is another thing, since I have been a medical transcriptionist for almost 30 years, he thinks I know TOO MUCH, which in turn makes me a hypochondriac.

As far as testing goes, I have had about everything from MRI/MRAs, VEP, SEP, EMG, LP, blood work etc.

I know there is something wrong.  I feel in "my heart" that it is MS, but I am open to any diagnosis because I need something to stop this in its tracks now.  

I remember back how I stumbled onto the forums and how much "it helped me cope", and that we are not alone.

Thanks again, for all your suggestions and help!  This is my neuro's last chance to open up to me about something or I will be moving on for sure.  I too cannot believe he thinks that going to Cleveland Clinic's Mellen Center is "doctor shopping."  

Terri

[Karen99]

Ditto to what has been said already.

This neurologist is keeping you under his wing, for what reason I cannot imagine.  He is interjecting the fear factor for patient compliance.  It's not as though he is keeping a close eye on you or anything.  

It is out of line for a doctor to suggest a patient NOT seek another opinion.

Have you had MRI's or other testing?

[biowham]

Terri--I'd really recommend at the least getting a second opinion. That's not doctor shopping, it's a valid approach when whatever your current doctor is doing doesn't seem quite right to you or you simply want confirmation of what your current doctor is saying.

As Tonya says, request your records, all of them. You will have to give a history all over again, but you've been lingering with this for too long. I wouldn't expect "stress" or whatever to bring permanent symptoms. And if your neuro were worth his salt, if he really thought it was stress, he'd've sent you for a psych eval a long time ago. Reason enough right there to move on.

Bio

[tonyad]

  Wow! You have certainly been very patient with this Neuro.
My opinion........I would "move on" or as what HE called it "Doctor Shop" (of course, that is NOT what you are really doing). You obviously don't feel comfortable with him and with that, you may let him (unintentionally on your part)  intimidate you in some ways by giving you the ( "Ol' -  Doctor i know it all because I have a degree hanging on the wall - God Complex) then he will.

   On a final note.....It is very easy to get your records from that doctor. They belong to you and you have the right to have them. I hope you can get some answers soon.
(7) Years is a long time not to have some kind of answers.  AND.....Like you said, if he has been suspecting MS  for quite some time.....then why is not taking stes to make a deffinate commitment to rule in or out?  Like Amers had said, another "Weenie Neuro".

~Tonya

[cainer]

no  words of wisdom  just   keep  on  -   years  ago  they  made  me feel  like  i  wanted  to have  it!!
   lots of us  here  have been  through  that    -stuff-      hang  on!!  tick

[amers789]

I am sorry you have another "weenie Neuro" It does seem to be more of those then ones who will listen and take a thorough history and then continue to try to get to the bottom. Keep on trucking, it is a pain to get a new neuro but if you read the many posts it is well worth it when you get the right one.
As for the muscle, burning spasm in the face. I have bilateral TN and mine is the atypical so it starts to ache then an intense burning occurs from my chin to my ear. It comes and goes off and on all day, every day. I have had it for two years and still not diagnosed. Ice helps mine, but hopefully you can get relief soon.
Hang in there
Amers