Many Symptoms, yet to find a diagnoses.

I just want to encourage those of you with mysterious symptoms that the doctors are unable to diagnose not to give up. I suffered for five years with severe fatigue, low grade fevers, frequent infections, muscle and joint pain, stomach issues, etc.

I saw so many specialists and got diagnosed with Chronic Fatigue Syndrome and Fibromyalgia. I wasn't satisfied so last April I pushed to see a rheumatologist at a special diagnostic clinic. In August, it was discovered I have a primary immune deficiency that's fairly rare. My body cannot make antibodies to infections, etc. I am still waiting on my insurance to approve the very costly monthly transfusions. I also stopped eating gluten so much and my body pain went away.

Please don't give up and do keep advocating for yourself. Feel free to PM me if you'd like to talk about anything.

Our daughter and I have had an undiagnosed chronic illness as well.

We recently discovered that our daughter has a mutant gene for MTHFR and that means certain things get very messed up because she cannot dump toxic stuff out of her body for lack of an enzyme.

It's not too difficult to treat. Stay away from folic acid (the synthetic kind) and take some supplements till it's straightened out. There are some medicines it's best to stay away from. But for the first time in 7 years we have hope she might live a normal life, so that is something.

Looks like she got this mutant gene from both dad and me, so dad and me will be doing a bit of work too.

Fibromyalgia is a very real disease, but I'm concerned by the number of people who get diagnosed with that, and it ends up they have Lyme, or this mutant gene, or problems with toxic mold.

See a Functional Medicine doctor if you can. Other MDs really don't have the time to figure it out, since insurance companies won't pay them for spending time enough time with a patient to do much more than drug you into oblivion.

Resource for mold: survivingmold.com (Dr. Shoemaker)

mthfr.net (Dr. Ben Lynch)

Also Google Dr. Amy Lasko

You may find some answers.

I have a lot of similar symptoms.

Last year I was rear-ended while waiting at a traffic light. While eating a biscuit in my car on my way to work, my head was thrust forward. At the time, I felt an electrical current move from the middle area of the neck up into the center of my brain. Afterward, I felt slightly different for a minute or two, but afterwards I returned to normal. I figured that everything would be okay. Little did I realize that the five to ten mile per hour impact to my car, with no damage, would do damage to my skeletal and perhaps my nervous system.

Ten or so days following the accident, I had an electrical current zap/vibration in my brain. Two days later, it happened again for around five seconds. This second time, it was followed by light-headedness for twelve straight days. All in all, for a span of twenty-five or so days, I felt light-headed most of the time.

After the twenty five days, I returned to mostly normal, only that I noticed that in areas with fluorescent lighting I began to become slightly sensitive.

Two months later it returned again for a week, followed by a month and a half of near normalcy. Last August, I had another period of light-headed dizziness that lasted a day or two, followed by three months of normalcy, except my hearing seemed to decline around fifteen percent.

Starting this February, I have been light-headed, very sensitive to fluorescent lighting, loud sounds, constant noise, and have felt very faint for long periods of time. I feel a constant pressure in my head, and my eyes feel like they aren't exactly balanced at times. I have felt electrical currents in my head, especially when I talked and coughed. I now have migraines and headaches, despite never having a headache prior to the accident.

Working in a building with fluorescents is like pure torture, a battle from minute to minute, feeling as though you are going to pass out.

I take medication and I have undergone chiropractic, but half of the symptoms are still here. Medication helps with the light headed form of dizziness, and chiropractic has helped with the electrical currents, but the head pressure is the same. I still feel slight currents every once in a while. I still get light headed every once in a while.

I have undergone an MRI, MRA, CT-scan head, CT scan neck, EKG, EEG, ENG, blood glucose test, blood testing, and the only thing that came up as abnormal is that my atlas had been moved out of place. The ortogonal chiropractic worked to move it back in place, which helped with the electrical currents, but I wonder if I experienced nerve damage in the accident. I've read that scans often can't detect very specific/small area nerve damage, as it's too small to be detected.

I pray that my symptoms will go away soon.

Not to say this is your problem--a friend had the same thing, Nobody could figure it out--until one dr took her off Ibuprofen! On some people, Ibu causes ringing in the ears. Don't give up--there are 1000's of things that they can' figure out, some is just guess work.
I've had horrible burning on my legs for years, tried no end of things and meds, medical marijuana helped a lot. I accidently discovered a very odd thing that has helped even more--yogurt--not eating it,, applying it to the legs! Of all the crazy things, I couldn't believe it. But it really helps!
A friend ran around for year with her head tilted to one side, it gradually got worse over the years---finally she knew she had found the right dr--she walked into the waiting room, and most the patients had their heads tilted!--Just a little chemical in her brain was missing-she was fine after some treatments--but it took years.
Have hey done the cardiac workup on a tilt table? Don't know the whole procedure, another friend had it done and they found the problem to her dizzy spells.

You are not alone in having a mysterious illness. I have spent the last 3 years with rather horrifying symptoms that are disabling and MS was what they came up with but they have not written a diagnosis for it due to lack of concrete evidence as it may be something else. I have had vision loss, loss of control of bladder, permanent impotence, intense muscle spasms feeling like a knife going in and out of my legs and arms (they last for hours at times, usually at night when I TRY to sleep), loss of taste time to time, balance issues and losing the ability to walk on occasion. I can sometimes walk but need a cane in difficult cases that are not severe enough for a wheelchair. The docs don't seem to know what is really going on. MRIs showed several brain cysts but the radiologist said they were of no concern. Lumbar MRI showed my lower back to be in fantastic shape (no slipped disks, stenosis, ect). I have no energy at all. I cannot exercise, I can hardly work and be on my feet all day. I am sluggish, slow to react as proven by a physical I had where my reflexes are slower than they should be. I have had blood tests for everything you can get them for, literally. I have had an EKG, EEG, many xrays, eye exam, been to an orthopedist, neurologist, cardiologist, optometrist and of course my main doc for years now. I am out of money, savings is gone from years of stashing away for exams and tests and nothing.

Sings4GodsGlory said:

For the past two and a half years, I have had non-stop dizziness, and high pitched ringing in both of my ears. I've been to over 16 doctors, Neurologists, ENT's, cardiologists...gone through a ton of tests, eng's, stacked abr's, MRI, CT scans, and some I can't even remember.

The dizziness and ear ringing is always there at a baseline, and it gradually worsens and then gradually recedes to the baseline again. When the dizziness gets really bad I can't really do anything besides sleep. I can't concentrate on anything. These episodes of greater dizziness usually last from 5-7 days at a time. Making school, and a normal life impossible for me. It's very hard, the only thing I can joke about is that I missed my awful freshmen year of High school, and I pray that I'll at least be able to go somedays for my Sophomore year this year.

Is there anyone else out there who can't figure out what's going on with them? It would be nice to know that I'm not the only person going through something like this. Or do you have any idea's? I am open to hearing anything that I might be able to tell the doctor's about, to lead to an answer! And if anything, just some people to talk to, other than my parents would be wonderful!

Right now, they are suggesting an eeg? Don't really know what that is...

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Like many others, I had health issues that the health community could not find the cause of. I put my diet under a microscope and discovered many toxins and deficiencies and eliminate them to get the results I was looking for. If any of you are willing to share diet information with me I will do the same for you.