Help Please!!!

[Valorie2469]

I have been suffering from an undiagonosed illiness for over 2 years I am a 36yr old female I was welder for 16 yrs. I first started off with tremors in my right hand and being off balance. Then the tremors started all over, head, arms, legs Dr. said some essential some resting tremors. Also a fe months later I started having Myoclonic jerks, problems walking, talking ,thinking, and confusion, stomach and bowel problems and low blood pressure, migraine headache and anxiety. That was  in the first year, second year ,on top of all the other stuff, my immune system crashed went to hospital running fever white blood count was under 1 stayed a week in the hospital. Doctors were undetermined on what caused it, my white count now stays around 3.0 , I am not very good at medical terms, but also was said my the stuff that makes my blood clot is low. Insomia started kicking in, with sleeping aids I sleep maybe 4-5 hrs a night. The newest onset is now I am hypoglycemic, I am not diabetic. I also had a 24hr E.E.G  which showed mild seizures at night but Dr.s say that it is not what is causing my problem. I have been tested for: MS, Parkinsons, Maganise level (were a little high but not dangerous) , Lukimia, Lupus, HIV(laughed at that one), Wilsons diesease, Diabeties, had spinal taps, MRI's, Cat Scan, had the camara to check stomach and colan. Had ears tested to see if that was causing off balance and probably more test that I can't remember. Everything has came back negative. I have been through 4 Neurologist( do to insurances and second opionins and no longer having insurance) I now go to charity hospital, to try and get more test done which I have been seen 2 times in the past yr do to over load of patients. I do see a regular nerologist in the town I live in for check ups and perscription he is a very good Dr but do to my limited funds we do test as I can afford them. We have been eliminating one thing at a time. Right Now I am on Keppra 1000mgs a day for the mild seizures seems to help with essintial tremors and some of the myoclonic jerks. Lunesta and Ambian to sleep, margesic for headaches, and Paxil for anxiety. I am tired and need help If You have any suggestions on anything it would be greatly appreciated.

[fish22]

Hi Valorie, I was surfing this forum hoping to find any answers to my problems when I came across your posting...For starters, most of your symptoms mirror mine, although, I also have fatigue and a host of other problems.  What striked me about your posting is that your doctors said your seizures are not causing your problems and all those tests you've been through yielding no diagnosis.  If future tests are negative, including Dr. Pho's suggestion of seeing a neurologist who specializes in seizures, you might want to check out WWW.UMDF.ORG.  This site is for Mitochondrial related disorders.  I am 50 years old and was diagnosed in 1997 with Mitochondrial Defects,  "Myoclonic Epilepsy and Ragged Red Fibers Disease" (MERRF #8344), and LHON.  By the way, some of my symptoms were not present at time of diagnosed.  Through the years, new symptoms appear and may or may not be related to this defect. Also, this is not to say you have this, and even though I do have these defects, I can't definitively say with certainty that Mitochondrial is my culprit, however, for me, to date, all my research points in this direction.  I also have hemochromatosis, etc...I wish you the best and hope you get to the bottom of your problems.  

Best of Luck.

[Kevin Pho, MD]

If you have been to 4 neurologists, it is unlikely that I can come up with something over the internet.

There has been a comprehensive evaluation done, which would rule out many of the major neurological disorders.  I agree with the tests done thus far.

I agree with the possibility of seizures, given the EEG findings.  Going to a specialized seizure center or a neurologist that specializes in seizures would be the next step.

The Keppra may help.  You can also consider a variety of other seizure medications as well, and this can be discussed with your neurologist.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patients education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
www.kevinmd.com