My Story..Need Direction
 

In the summer of 2008 I had what I refer to as attack on my way home from work. I live in Atlanta and drove 35 miles one way to work. On the way home from work I had sudden a spacial disorientation like I was loosing total control. A vertigo type attack but not exactly. It was very troubling and it seemed like everything was moving in slow motion and my equilibrium was off.

I was basically bedridden for months and only went out to go to doctors appts.

I was sent to a cardiologist, eye doctor and all test came back normal. I had a cat scan, two MRI's and physical therapy. Was initially diagnosed with BBPV, Vestibular Neurtinitus (sp) and then finally Migraine Associated Vertigo.

Within months of this happening I started having terrible pains in my legs and knees to the point it was painful to walk. They did vascular studies, xrays and said they found nothing wrong. Then I started having what felt like running water down my left leg.

Then I started to get numbness and tingling in my arms and weakness in my left arm. Muscle twitching all over.

Within weeks I started having a strong pulsation in my left ear that stayed for several months and then went away but will return if I put an ice pack on the back of my neck.

Then the stomach issues started, gurgling, burning pain on the skin and a vibration that is so strong at night I feel like it is going to jump out of my insides. It happens every night.

Somewhere in the midst of all of this I began to have an internal tremor that moves from place to place within my body. Most times it seems to be centered within my abdomen, back and upper back area.

I have stop growing hair on my legs, my feet are very cold all the time and I have recently starting having issues with both big toes being red with pain.

And there are other issues, it seems to have some correlation to eating the waviness/dizziness.24/7..not what I eat but as soon as i put something in my mouth. The facial sensations are very odd and seem to intensify with eating thus making the other symptom worse.

So far I have been to three neurologist, two cardiologist, eye doctor, ENT, PCP, two gastro doctors.

I have had the following test.
Brain CT Scan
Three MRI brain
MRI NEck
MRI LOWER BACK
CT Scan Abdomen
CT Scan Chest
Endoscope
VENG
EAR TEST
Balance Test
Caloric Testing
Hearing Test
Ultra Sound Leg
Ultra Sound Abdomen

Everything comes back normal.

I went to podiatrist and she is having some additional vascular test done, plus she wants me to have some nerve studies and thinks I need to see a Rheumatologist.(sp)

I have been very sick for almost two years and have lost my life as I once knew it, I need some direction.

If anyone has any suggestions or thoughts about where I need to go it would be appreciated. Life is pretty tough these days, one day at a time is all I can do for now. Would love some answers.

Timeless,
My goodness you have had a rough journey. I would certainly get the nerve study done (EMG) to rule out MND and a rumatologist to check for fybromyaliga or something realated. I have had the woozy dizzy feeling mine was medication related to check all you medications. Mine lowered my blood pressure and caused all kinds of problems. Here is a big hug( ) hope everything turns out ok for you.

Thank you , i am not on any medications except a very small dose of Valium and most of these symptoms were there prior to me starting it.


In addition I forgot to put in my former post that at night I sweat from my abdomen down to my legs and become very hot in that area...just about every night the same spots as the vibrations. It is almost if there is some type infection there but they tell me all my blood work comes back okay ....


What is MND? Motor Neron Disease I assume.

I thought some of this might be menopause but i just do not think it all fits into that category.

Thanks for your kind words.

Have you taken many antibiotics in your life? Had a bad stomach virus with diarrhea prior to the symptoms? SOME of these symptoms sound like a Candida Albicans problem. When you have a kill-off of bacteria in your intestional tract, and the yeast takes over -- you have problems -- sometimes BAD problems. You have to re-establish the "balance".

Google "The Yeast Connection" and see if any of this rings a bell.

From your diet, drop:

1. Anything which tastes sweet, including fruit and sweeteners.
2. Gluten (wheat, rye, barley and oats)
3. Milk.

Eat all the cheese and plain yogurt you want. That should fix it.

Well okay, then just try it for two weeks. It should be easy.

Upside? It will probably cure you.
Downside? Besides initial cravings, there is no downside.
..

Mite not hurt, if you can?
 

To get seen and checked out by a good neurologist? Because a lot of your problems sound 'sensory nerve' related. Wether you go to a neurologist or a rheumatologist, make an appointment SOON as it often takes a long time to get an appointment.
In the meantime? See if you can get copies of any tests all the other docs have done...Just ASK for copies of tests results, and expect to pay anywhere from nothing to about $20. for each set. I'd get them and make copies myself & for the docs I see- it's cheaper and then I've got these gobbleydgook tests and results for my own perusal [and try to make sense of!]
Good luck and please don't give up! You should'nt have to lose your life, but fight for it and get it back. Hugs and hope :hug::hug:'s - j

Hi there, Your story touched a familiar place . How incredibly frustrating it is to know that something is putting your regular life as you knew it, completely out of reach, and look for help yet, find nothing. I have an uncommon disorder which is complex, and unknown to many doctors. I have 14 specialist, none of whom check in with the others. Been down this road for so long it seems like the eternal struggle just to keep putting one foot in front of the other. But what choice does one have other than giving up. Medicine is really throwing one guess after another into the mix until something points to a sure thing. Ever watch the popular TV show House? The main character is someone I would love to find in my own life. The rarity of one who likes to think through a mysterious presentation. It might benefit you to contact a teaching hospital for a more open ended review.

In your case I agree with 'Dhalek's' advice to seek out a good Neurologist. 'Good' meaning someone who likes to confront a mystery because run -of- the mill patients are rather- well, boring. But finding that one who is curious enough to investigate, is the challenge. I also agree with the advice to see a good Rheumatologist. They can run many tests which will at least rule out other conditions and save everyone time, and very possibly point to a -"look here"- scenario.

Your situation forces one to become super responsible to self-educate and self- advocate. I have the greatest sympathy and regard for anyone in this position. It is not easy, yet it can be done. You have done much of the ground work already for the other doctors you will find.

You will certainly learn more than you ever imagined. Please do rely on your instincts on what is helping. The same goes for what feels less than helpful. Skill levels vary so wildly in the medical profession, that it amazes me sometimes. Help can come from unlikely places.

It is a good thing to put it out on this site. I have had more education here than I ever expected. Your story is not that unfamiliar. Many will be able to relate. Hang in there, recognize the empowerment process and avoid the helplessness of those who just aren't able to offer more than the most common forms of treatment.

I hope you find your answers soon. I encourage you to never give up, or give in to the easy prescriptions, easy answers unless they truly feel right. You deserve to know what is truly going on. The answers will come, despite the "help" from the medical professionals.

Best Wishes TT

Hi there- certainly does sound like a long road. Have you (or any of your docs) considered Lyme's disease or the other tick born illnesses? Difficult to assess if the doc isn't Lyme-literate. If you have any interest, I've heard good things about Dr. Bergeron in Roswell, GA. Sorry to throw more differentials at you, but Lyme, Bartonella, Babesia and Ehrlichiosis can often mimic other illness especially those with multisystem symptom constellations. Just a thought.

Best of luck

I would definitely check into the gluten connection too..it is amazing the damage gluten can do to a body. I have sensory neuropathy because of gluten. The tiniest cross contamination of gluten now puts me into a tailspin.