Neurological exams normal how can this be?

[dutchflower]

Hello and thank you for taking the time to read my questions.

I'm a 42 yrs old female. 1 Year ago i had (still have) a dropfoot, i had lots of pain on the lateral part of my lower leg so i was prescribed Gabapentine (Neurontin, 1800 mg/day). It helped a lot for the pain. But now it comes: over the year that followed i developed severe muscle weakness in my right lower leg and since 3 months same for the left hand. I can't stretch my fingers, only the thumb is kind of normal. I can't walk without a walker anymore and i walk very slow, my foot turns to the inside and i stumble a lot. Since a few months i also experience mild weakness in my left lower leg. And strange tingling in my calf.

For the drop foot i was examined with EMG, MRI (back, hip, upper and lower leg), bloodwork was done, as well as a lumbal. The MRI's all came back normal. The EMG showed conduction block at the knee of the n. peroneus, but nothing was found on the MRI. Bloodwork showed a higher BSE and the platelets were too small.

They sent me to a specialised clinic where i got an EMG of the lower legs and both arms. In the legs they found nothing! For the left arm they found a block a little bit above the ellbow and signs of carpal tunnel syndrom. So an MRI was made of my left upper arm. Again nothing was found, the bloodwork came back normal. So the docters can't explain my condition, they are convinced there is something wrong, it is not a psychological issue, but they don't know... this does happen to 15 out of 100.000 patients i was told.

Any suggestion would be welcome, symptoms: muscle weaknes in both legs, left hand and lower arm, nerval pains (burning!), severe fatique, not able to stretch finger (only the thumb), not able to stretch foot/toes, not able to stand on my heel or toes, need a walker. The symptoms onset were acute starting with dropfoot. They seem to be progressive. They get worse when i exercise too much and become a little better after periods of rest.

And a question regarding Neurontin: it can influence reflexes, so for example if your reflexes are weaker and Neurontin makes them stronger could this show normal reflexes  on a neuro exam? Same idea for the emg, as neurontin influences the neurotransmitters! Has this ever been part of a clinical trial? And same for the bloodwork: neurontin can lower the leukocytes so, if you have a higher BSE and Neurontin lowers the leuko's, could this result in a "normal" outcome of the BSE level in the blood. In other words: you get a false outcome...

Do you think a biopt of nerve tissue would make any sense? They haven't done this yet.

I'm desperate, i don't know what i have, don't know what the future will be, docters just don't know. How can this be. I'm scared more muscle groups will start getting weaker. Any suggestion is more then welcome. Thanks a lot for reading and have a wonderful day Dr.!

Kind regards, Anja

PS: I'm Dutch so please forgeve me if i have used strange words or so, please ask if something isn't clear :)

[dutchflower]

Hi Selmas!

I'm prety sure they ruled out scar tissue as the knee was on the MRI too and I guess it would show up on a MRI if that would be the cause, but i will bring this up too!

I will first try to talk with my regular neurologist to see if he is willing to do more tests and/or explain why not. You're absolutely right i deserve better answers than "we don't know". If my neuro doesn't want to help out i will go for a second opinion!

[selmaS]

  The brain MRI would be to rule out ne neuro issue....not that I know for sure ....

If u had knee surgery, did they rule out scar tissue pressing on the nerve?

  If u can request copies of ur reports I would, and going forward always request copies of all testing done, MRI's and reports even blood labs this way if u go for another opinion u have all the info and do not have to wait for it.

[dutchflower]

Hi Selmas,

Thank you so much for your answer! As for the MRI: they did MRI's of upper and lower leg, hip and pelvic, the cervical spine and upper right arm. They did NOT do a MRI of the brain, do you think they should do that and if so why?

Unfortunately i don't have copies of the reports but i can ask for them if that helps!

I never sit with crossed legs, i have had many surgeries on my right knee and i can't do that too long, only a few minutes and then it starts to hurt, so that isn't the issue ;)

I was checked for HIV, and the thyroid was tested too, also ANCA and ALA, etc. I'm not sure about free T3, free T4 and TPO antibodies and TSH, they did not do an ultra sound, maybe they should, i will discuss this with my regular neurologist as soon as i have a new appointment.

As for the family: lots of arthritis is in the family of my mother. I don't know who is my father so there some "mystery" there :)

Thanks again, I appreciate it a lot!

[selmaS]

  MedHelp has a Dropfoot Group u may find some info there-

http://www.medhelp.org/groups/foot_drop_

[selmaS]

  Hi...I read u had a MRI, what area was done? cervical spine, brain? Since this seems like it is a neuro issue, I would imagine that is what they would have done...do u have copies of the reports, and the MRI itself, try seeing a diff Dr if u can...not sure how ur medical system works, but I would push for more answers.

I just had a friend deal with drop foot, and I have to ask, do u sit with ur legs crossed?

As for how neurontin affects ur lab results ur Dr should be aware of all meds u r on and how they may affect the outcome, but do bring it up on the next visit,.

As for the weight loss, have u been checked for an auto immune issue? Like Hashimoto's thyroiditis? Something to at least rule out, and when running reg blood labs they do  a TSH test that can show normal result for thyroid when in fact there is something amiss.....do ask about them running free T3, free T4 and TPO antibodies along with TSH, and possible ultra sound of ur thyroid to see if u have ne nodules....

Look to ur family medical history....

[dutchflower]

I forgot one very important symptom: severe weightloss! (over 25 kilograms in 1 year)