Weird symptoms and no answers

[lcarlson90]

Please forgive me if this is long. Around 2001 I started getting dizzy spells that would last for a week or two and go away. I also had what I would describe as "brain fog". I saw a bunch of doctor's and a nuerologist who did an MRI to check for MS (I think) but everything was clear. He said I had a Vitamin B12 deficiency and gave me some shots and sent me on my way.

Then in 2008 after DS2 was born I started feeling lethargic, still had the dizzy spells and then I started getting night sweats. I went to the doctor and they ran a bunch of tests and said that the screening test for Lupus came back positive. I went to a rhuematologist and they did more tests and said that I didn't have Lupus. After researching night sweats on-line I became paranoid that I had Lymphoma and my doctor said he did feel a slightly enlarged lymph node so I had a CT Scan and while they found some enlarged lymph nodes they weren't overly worried. This was 4 - 5 years ago so I assume I would be really sick or dead by now if I had Cancer.

I kind of gave up on trying to get answers because it just seemed like there were no answers. The night sweats, fatigue and dizzy spells are still here 5 years later and I am getting really tired of it. I am only 34 so I don't think it's a menopause thing. I am planning to see my doctor again next month. Does anyone have any ideas about tests I should ask for or conditions that I should research?

[Nyfeara]

I've been experiencing on & off dizzy spells & "brain fog" for a few years, much like you describe. I too, had the MRI with contrast to rule out MS (I am now 39), all kinds of bloodwork (vit D deficiency found), saw an ENT, neurologist - nothing ever comes up.

So, I took it upon myself to see a cardiologist, just to make myself feel better that it was not cardio related and the same hospital had a Balance Center. I went there for an evaluation as well. The testing was all completely non-invasive and took 30 minutes to complete. It consisted of wearing a scuba type mask with a bunch of tiny cameras in it that track your eye movements. They then run you thru a series of tests following a red dot, laying down & sitting up, blowing warm & cold air into each ear. The results were that I have a minor inner ear disturbance. They didn't recommend doing much about it now b/c it only happens every once in a while. My concern was whether or not I needed to worry about passing out when alone with the kids.

For the fatigue, my PCP decided to refer me to a sleep center. I know I snore more than I'd like to admit now & she said one of my results could be indicative of not getting enough air/stopping breathing while sleeping. We'll see how that goes...

I really just wanted some kind of explanation. The ENT did some allergy testing b/c I thought maybe it was sinus related (my mom had horrible sinus issues) and then just called it a day, said it was just a vertigo thing and sent me on my way. I guess it really is just that, but I feel like the testing at the balance sent was a lot more 'diagnostic' than my ENT was.

I've know several other people that have complained of the same thing with dizzy spells and they've never really gotten a definitive answer and then it just went away in most cases. I've heard that some feel it may be hormone related. I do think that I notice it happens more during AF's visit - I've never tested as anemic.

That's been my experience so far. It is pretty frustrating.

[Aishe]

Hopefully Melbel will respond, but Lyme disease is the first thing to cross my mind.

[wendibird22]

I'll weigh in with my standard "get tested for Celiac". Foggy brain, neurological symptoms, and the low b12 are symptoms. It's not unusual for celiacs to first be tested for MS, lupus, and other autoimmune conditions. Symptoms can wax and wane and be charged by stress, illness, and pregnancy.

[lcarlson90]

Hopefully Melbel will respond, but Lyme disease is the first thing to cross my mind.

I would think this too but I live in Southern California and I don't think I have ever been exposed to ticks.

[lcarlson90]

I'll weigh in with my standard "get tested for Celiac". Foggy brain, neurological symptoms, and the low b12 are symptoms. It's not unusual for celiacs to first be tested for MS, lupus, and other autoimmune conditions. Symptoms can wax and wane and be charged by stress, illness, and pregnancy.

I will ask my doctor about this. The thing that really concerns me is the night sweats because if you google them there really is only a few explanations...menopause, cancer and TB.

[Globetrotter]

I had ongoing dizziness a few years ago so my doctor ran some cardio tests. It turned out to be related to my ears and allergies.

Did you have a positive ANA? That can be a potential marker for many things, not just lupus, but some people just have the pos. ANA without any autoimmune issues. I had similar symptoms (except no night sweats) and, in my case, the only thing that has come up positive so far is thyroid antibodies, and that turned out to be the issue. Even then, I had to push for treatment.

Night sweats can have a variety of causes so try not to panic.

If it goes undiagnosed, is there a university hospital you can consult? At the very least, get a second or third opinion. You shouldn't have to live like that!

[wendibird22]

I did have a few periods of night sweats before going GF. I wouldn't wake up soaked but I was sweaty and I'm usually always freezing. I haven't had an episode since going GF. When I get gluten end I get an almost immediate buzzed feeling in my head and I feel foggy and fatigued all at the same time.

[hillview]

Hopefully Melbel will respond, but Lyme disease is the first thing to cross my mind.
:yeahthat:

[KLD313]

I've had night sweat issues when my Grave's disease was active. It's actually a sweat day thing. I've also your other symptoms with it. If you've never had a test for Grave's antibodies it may be worth a shot. It probably wouldn't hurt to test for Hashimotos either.

[mommylamb]

Wat about sjogrens? One of my best friends has it and has similar symptoms, but also has dry eye and mouth which is associated with it. The doctors first misdiagnosed her with lupus. Apparently that is a common misdiagnosis for someone with sjogrens.

[Globetrotter]

OP, I was wondering if you had any updates??

[rin]

First thing that came to my mind is a gluten intolerance. Your symptoms sound similar to those that a blogger I read had (although I don't remember the night sweats, but she had the dizziness and neurological stuff); she went GFCF for one of her kids and realized that all of her weird symptoms had resolved after a while.

[queenmama]

Have you had your hormone levels tested? This sounds very similar to what my doctor experienced... up until he passed out at the wheel with his children in the vehicle.

He had tons of tests and scans and nobody could give a diagnosis. He was a busy OB/GYN so everyone blamed stress. Finally, a colleague suggested he have his hormones checked and it turned out he had a severe imbalance.

I hope you find the answer so that you can get well!

Lara