I have been undiagnosed with health problems for 6 years and I'm hoping to find anyone willing to help or offer advice. My health started deteriorating suddenly, without warning and ever since I've continued to have what I call "episodes" that occur daily. Sometimes I can deal with them but mostly I need help doing normal things such as bathing, cooking, cleaning, etc. I've seen 8 doctors who have no idea what's going on and I'm so far in debt that I can't afford to see another one.
My symptoms include:
leg weakness/numbness/tingling/cramps (most recent)
dizziness, not vertigo
lightheadedness on occassion
headaches that can last for weeks or up to 2 months
burning or stinging pains in legs and arms
head fullness, or pressure
sinus tachycardia, which hasn't been figured out yet but so far, no known cause
intolerance to heat
can't walk or stand for more than 5-10 minutes at a time
buzzing sensations in the head
nausea, which can happen with or without dizziness
All of these occur daily, except for the headaches which happen every few months, and leg weakness which happens about 5 times a year and last about a week. Tachycardia happens mostly when I stand up but does occur while I'm lying down as well.
Sometimes I feel these "episodes" mimic a sugar problem because I get the shakes and feel clammy but I've had numerous tests to rule this out. These episodes can occur at any time as well and can last for days.
This has taken over my life as I am forced to be bedridden 90% of the time. I've missed out on normal things like working, having a family, and missed several weddings and family funerals. I only drive a few times a year and I can't do my own shopping. I've had so many bad episodes while shopping that it causes severe anxiety when I go in there now. Sometimes I can control it, until the dizziness kicks in. Then I have to run out to the car.
I was scanned for MS in 2005 and it was negative. Also Lupus, Lyme, ANA, smooth muscle, tilt table, stress echo, 2 regular echos, holter monitor, event monitor, CT of head....all normal. My potassium has been low by no more than 2 points on 3 occassions. Liver and kidney tests were normal. I was also tested for vertigo tons of times and I don't have that either. They ruled out fibormyalgia, chronic fatigue syndrome, and P.O.T.S.
I'm 29, very light smoker, don't drink. The only meds I take are birth control and dramamine. I feel I'm very sensitive to meds now and get weird side affects from everything buy tylenol. I stopped my birth control for a while to see if it would help and nothing changed. I didn't start the dramamine until 2 years ago so it's not causing this. I've never done any drugs, never been around any toxic chemicals, never traveled overseas. Any suggestions would be helpful!
Maybe you should get rescanned for MS. I certainly wouldnt want to alarm you but I was scanned in 1998 and was negative..symptoms persisted and I was rescanned in 2000 with a diagnosis of "classic MS". It's one of those elusive diagnosis..you should also get an MRI of your spine which can correlate with the numbness tingling in hands/legs??
I have most of your symptoms but mine happened after a mild Traumatic Brain Injury. Even though doctors know the cause still medically nothing much can be done. They name it as Post Concussion Syndrome which encompasses almost all the symptoms a human being can experience. Even frustrating lot of diseases has the same common symptoms.
You can try with NIH where they started a new program with all mystery illnesses if you are in U.S.
The program is called : "National Institute of Health's Undiagnosed Illness Program"
I have had almost identical symptoms for 12 months and finally tracked down the likely source of infection, EBV.
After 4 months infection, EBV can tends to produce false negatives, so most doctors are not able to diagnose it using traditional diagnostic methods. Gene sequencing might be possible, but the symptoms can be matched to the vector using a Sherlock Holmes deductive process.
There are two known treatments.
Pure virgin coconut oil. 3 tablespoons a day. Swill it round the front of your teeth till it is liquid and swallow with some water. I have a sour sweet and/or some liquorice at hand. It tastes bad but the symptoms of EBV are so much worse. I have been crippled by it. I already feel just a bit better after a day of coconut oil.
The other is a lightly researched preservative, BHT. I am likely to combine this with the coconut oil. I want to hit the virus harder than it is hitting me and this morning before the treatment I was punch drunk. 2mg is an appropriate dose. If you EBV, BHT etc ... you will find much more info. BHT has been shown to be effective on Herpes Simplex and EBV is in the Herpes family, but it has not been tested yet for EBV treatment, so it might be best to see a health care professional before embarking on a BHT treatment. BHT is used in the food industry, so most will have all taken it already.
My daughter also has it, so I know it is a contagious disease. There seem to be hundreds if not thousands of people who are suffering with this ailment without diagnosis. I hope this information is of use to you.
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