it's back... the odd symptoms, pls. help

[Cassy4225]

Hi, I am a 39 yr old female, with odd neuro symptoms that started about 3 yrs ago.  I had 2 neurologists examine, poke and prod me, and a total of 9 MRI's - and also an MRA.  and and EMG. I also had tons of blood tests, for metobolic issues, inflamaiton, liver testing, vitamin deficincies, etc.  EVERYTHING WAS NORMAL.

I had buzzing, tingling, and all other little weird symptoms that almost drove me mad.  The buzzing was the worst.  (90% of it occured waist down.) In addition, (for me the most frightining, was when I'd flex my neck forward, i'd get a weird moment of numbness or pulling of sorts in various spots- which when to normal when my neck went back to normal posture.

In addition to all of the tests, and negative results, I still went for an opionion outside my region.  My doctors BOTH encouraged me to do so, and sent all my records to Boston, where a neuro at the hospital, did a full exam, reviewed notes, and concluded that he agreed that I am not showing any clinical signs of anything that he would investigate further.  He said that most diseases of organic nature, progress- and nothing is progressing in my case.

I was devestated to NOT KNOW what was wrong with me... he told me that although there wasn't a name for it, to just accept it.

I lived in worry that it would PROGRESS- and it has not, thank god.

HOWEVER--- I got my sanity back, because it did go away for almost a year and 1/2.

Now it's back..... I just don't know.  I'm upset again, and trying to ignore it. I have not gone back to the Dr.s... because nothing has changed.  I'm just concerned that it IS something- why else would my neck flex, and weird spots go numb or pull for the second that my head is down?

any suggestions?

P.s. the MRIs were of neck, 2xs brain2xs thoratic, lumbar 2xs  then repeated on neck and lumbar about a year later.

all were negative.

any suggestions to a girl, who dosen't want to panic, worry, etc again.  I'm still concerned about ms.  One physician told me I could have a benign form of MS, but that he would never treat such a case, that at times people do have odd MS like symptoms that never are confirmed, or develop into anything.

Thankyou,
Cass

[Cassy4225]

Huh??

I had 9 total MRIs with all being negative for anything.

2 on brain
2 on neck
1 on thoratic
2 on lumbar

then the brain and neck re-done a year later.

All negative.

[soldy]

Hi

Am I correct that you had 9 MRIs  on your had.Did you see any changes in your pineal gland  cyst size..IN MILLIMETERS

[Cassy4225]

Thank you for the reply.....

What do i do, if both neuros agree, that if nothing is 'dramatically different' that they don't think that you should do anything else??

Also, they ALL said there was NO reason to do a LP, because you shouldn't tap somone unless there is a sign of somethig else wrong- they said with clear MRIs bloodwork, and emg, and neuro exams, there is no reason to justify a lp- that it shouldn't be done, without good reason.  

They also said that lp can be skewed because of red blood cells sometimes entering the fluid....

they also said that the side effects of lp can be debilitating for someone who dosen't NEED one....

thank you,
Cassy

[DrNoopurMD]

Hi,

MS is a difficult disease to diagnose at one go and many times all the tests may be negative.
Now you have got similar symptoms again so it is important to do a complete reevaluation including MRI of brain and neurological exam and even a LP.
It is also important to look into other possibilities apart from MS like fibromyalgia and peripheral neuropathy.
Pease do not delay and get a neurological exam done. Do keep us posted!