Multiple diagnosis's received. Where do I go from here?

[Annalia]

Brief summary: 1999 collapse at work, dx w/lupus, fms, advanced bilateral neuropathy,TOS, nerve entrapments, CFIDS, central nervous system lupus with seizure activity.  Flunked nerve conduction test...multiple abnormalaties.  Awarded SSD back to 2000 for FMS, chronic pain/fatigue, neuropathy. No apparent remission of symptoms but ana/lupus related test fluctuate depending on the lab used.  Previous positive ana's were done at RDL lab in CA, local labs read current results as negative.   Seizure activity is daily and beginning 12/02 my 7 y/o began having partial seizures.  We are being eval. at St. Louis pediatric and adult epilepsy centers.  I have received volumes of workups...to no avail.  Still no clear cut answers as to what is going on.  I'm currently seeing a rheumy, internist, epitologist.  Numerous neurological symptoms run same between my father and me.  He is diabetic, pernicious anemia, cardiac problems.  Me and son have chronic EBV.  I'd like to get to the root of our prob's. if possible.  Do you have a recommendation of what type of doctor would be the best for us to see.  Would it be endocrine, immunology, metabolic?  I just don't know what direction to go.  Frustration level is high.  Would like to be able to know what is happening to sons and myself.  My oldest son, 20, has these same symptoms with fainting and heart murmurs, urinary tract bleeding but no dx, neg. ivp.  he too has symptoms of sz.

[Freddd]

Hi Annalia,

I have or had a lot of your symtoms.  So do/did my children.  The severe peculiar crippling fatigue, sore muscles, lifelong depression with only a few "lights on years" for unknown reasons, thick jellied sticky mucous, multiple bilateral progressive neuropaties, beefred burning tongue, headaches, pain, neurological symtoms all over the place, paresthesias both arms, legs, feet, hands, etc.  We have had a sudden and immediate reversal with 1000mcg-5000mcg of METHYLcobalamin of many symtoms and a reverse progression in others.  Of course a high potency b-complex and 2000+mcgs of folic acid are needed to along wioth general multivitamin and mineral.

The key to all of this is sublingual methylcobalamin (methylb12), the active form of the vitamin.  It turns out that cyanocobalamin can prevent anemia same as folic acid, and like folic acid, it prevents b12 deficiency neuropathies.  Your situation sounds very much like any of almost a dozen B12 crisis in my life.  When I put a 1000mcg methylb12 under my tongue little did I know how much I would be changing my life.  15 minutes after I put it in my mouth a wave swept across me and my entire consciousness was changed.  It kept changing for 45 minutes.  At the end of that time the severe crippling fatigue of FMS was GONE.  The lifelong depression was GONE.  THE LIGHTS HAD COME ON.  They have stayed on for more than 2 weeks now.  ALl three of my children have had a similar experience.  Plus their friends are having these experiences.  MethylB12 is harmless.  If you are having a B12 crisis the change will be almost immediate.  If it doesn't help, you haven't risked a thing.

[ANNYDEB]

WHAT TEST ARE DONE TO RULE OUT  VASCULITIS AS UBDERLYING CAUSE FOR MONONEURITIS MULTIPLEX.. FOR WHICH I WAS TREATED FOR..
MY.REPORTS SAY THERE WAS NO TISSUE AVAULABLE  AND A BIO WAS NOT DONE... I WAS TREATED WITH IV STERIODS AND LATER PREDISON  FOR A CONTINUOUSES 8 MONTHE..FOR INFLAMATION. BUT ALSO TREATED FOR FOLIC ACID , THAMINE , POTASSUIM ETC.FOR 4 MONTHS....
DURING THE SAME PERIOD I WAS DIAGNOSED WITH DIABETES 11 AND SUGARS WERE NEVER CONTROLED  DUE TO STERIODS.. REQUIRING INSULIN SHOTS /AT REHABILITATION CLINIC I HEARD AND FELT MY INTESTIONS RUPTURE , BUT WAS SENT HOME FOR 5 DAYS , EMERGENCY ROOM AGAIN  AND NOW  EXPLORATORY SUGERY FOR BLOCKAGE/ SEVERE   MANY ABSESSES AND RUPTURES  OF LOWER BOWEL REQUIRING SUGERY AND COLONOSTOMY../ STILL WENT TO REHAB ON STERIODS AGAIN ONLY TO COMPOUND DISABILITIES OF HANDS FEET ARM AND LEG WEAKNESS....REGUIRING AMBULANCES TO GO TO DOCTORS / LEGS WEEPING BUCKETS AND 5 X THE  NORMAL SIZE/.HELL FOR 10 MONTHS WHILE ON PREDNISONE UNTIL WEANED OFF...NO ETIOLGY EVER FOUND....LONG LONG STORY........
OH BY THE WAY MY SUGAR LEVELS WERE ALSO HIGH  ON FIRST EMERGENCY FISIT  BUT NOT CONSIDERED.. NO EXRAYS OF STOMACH EITHER INSPITE OF GAS AND HICCUPS...      OF ..  EMAIL MY PLEASE ANNYDEB39@AOL,COM  THANKS

[Annalia]

Thank you doctor.  I appreciate the clarity you provided in giving me some direction.  I will continue with my plan for evaluation at the adult epilepsy center, dept. of neurology at Washington U/Barnes Jewish.  I'm set up for next month.  

Dizz...lol  I've thought of drinking from another well.  Lupus is such a bizarre illness and I've run the gamut of docs for it.  At this point I'm gonna focus on the neurological aspects as the doctor recommended and see where that takes me.  Thanks for the info. I appreciate it.

[Annalia]

Thank you doctor.  I appreciate the clarity you provided in giving me some direction.  I will continue with my plan for evaluation at the adult epilepsy center, dept. of neurology at Washington U/Barnes Jewish.  I'm set up for next month.  

Dizz...lol  I've thought of drinking from another well.  Lupus is such a bizarre illness and I've run the gamut of docs for it.  At this point I'm gonna focus on the neurological aspects as the doctor recommended and see where that takes me.  Thanks for the info. I appreciate it.

[CCF-Neuro-M.D.-JT]

Complex case that probably has some genetic component to it. I agree that there may be an underlying problem that can explain some of your symptoms or tie some of them together.  But the first thing to do is sort out what appears to be the most urgent problem that requires treatment.  I understand that fatigue/chronic pain and the chronic EBV findings do bother you, but I would put this behind seizures (which require more attention and adequate treatment as this can lead to more pressing complications) and what may or may not be lupus and lupus related neuropathies.  The seizures should be controlled first and foremost with medications and a search should be done for an underlying cause, so stick with the neurologist.  An MRI of the brain should be considered to make sure everything is ok if you already haven't had one.

Mitochondrial disease may present with similar findings, affecting multiple organ systems (neuro, heart, muscle, etc...) and is inherited through the maternal line (kids get it from the mother).  This is a possible consideration that can be discussed with your physicians.

Finally, if you're in St. Louis, Wash U/Barnes has a top notch neurology program that may be a good place for someone to get a fresh look at you. Good luck.

[dizz]

think I'd move or start drinking from another water well, if not I'd get in contact with UC Davis Medical Center near Sacramento, CA.  They do research on Lupus and with that many of your family demonstrating symptoms, they would probably do a DNA analysis on your entire family. My ex has Lupus and this is what she went through. However her lupus mainly effected her joints.