Ok wonderful mamas - will you please help figure out what's going on with me?

[pianojazzgirl]

A couple of months ago I went to my family dr to try to figure out the cause of some weird symptoms. Since then I've had a CT scan of my head, chest x-ray and MRI of my brain and still no answers.

First symptoms:

fatigue (much more tired than usual, though not crazy exhausted like when I had mono).

intermittent nausea. This felt an awful lot like mild morning sickness but I was NOT pg. Sort of a mild nausea that would be helped by eating small amounts of food. For a couple of months I almost literally NEVER felt hungry - just kind of nauseous so I knew I should eat something.

intermittent headaches. Nothing crazy - but I usually don't get headaches at all.

swollen lymph nodes behind my ears, in front of ears, in my neck and under my jaw.

Then I started getting tingling sensations in my face (this is when I called the dr). It started around my jawline on my left side. For quite a while (a month, month and a half?) it would show up only on that side of the face. Sometimes it would be there almost all day, sometimes nothing for several days and sometimes somewhere in the middle. The neuro I saw (who ordered the head CT scan) wasn't worried since the scan was clean and the tingling was only on one side of my face he attributed it to an "irritated nerve".

But then the tingling started on my other cheek as well and on my tongue. And then my lips as well. There were a few bad days where it was in all of those places all day every day. So my family dr called the neuro and got me an MRI ASAP (got the results finally and they were clear). Then the tingling got better and better (quite quickly) and now it's still there occasionally but days will pass without anything. BUT I have started to have the occasional tingling in my right little finger!

The other thing that's been going on for a while (not sure how long) is hair loss (UGH!). About a week or two ago I started getting a little worried about how much thinner my bangs were looking - the hair in that area is much sparser than the rest of my head.... EXCEPT (a few days ago I got the bright idea to use a hand mirror to see....) the back of my head! It is way worse than my bang area. I can easily see the scalp through the hair. Oh yes, and my scalp feels irritated and itchy.

So I forgot to mention that the weird mild nausea thing actually went away around the time of the CT scan (2 months ago???), but now it is back (as of the past few days).

ETA another symptom: for all of this time I've been seeing lots of "floaters" in my right eye. Pretty much all the time everyday.

More info:

I have a lot of anxiety. I tend to be an anxious person in general and since this health stuff my anxiety has ramped right up. I'm having trouble functioning normally at times - I just can't stop thinking and obsessing (the prospect of being bald is not helping!). I don't know if the anxiety is a cause of some of my symptoms, or if it is some medical condition causing the anxiety (or if it's a vicious circle). I'm also feeling depressed (I think?). I just want to stay asleep so I don't have to deal with the anxiety. Not sure if that's depression or what, but there you go.

I also have a LOT of amalgam in my mouth. So yup... I have a feeling like this could very well all be mercury related. I have an appointment with my dr next week to tell him about the hair loss, see what our "next steps" in finding a diagnosis are, and I am definitely going to request a test for mercury poisoning (blood test? urine test? what should I ask for?).

I ALSO am homozygous for an MTHFR gene variant (not sure which one). So - possible B vit deficiency = tingling, hairloss??? Who knows...

Oh yes, and the chest x-ray was because I had a persistent cough. Results were that I had "inflammation in my lungs". Dr prescribed Flovent which cleared it up. Mentioning the x-ray to say that nothing besides the inflammation was found.

Ok, I think that is all the info? Oh yes - one other thing: my cycle was really weird 2 cycles ago - about 2 wks shorter than usual and more days of bleeding (usually my cycle's about 5 wks, this time it was 3). Relevant? Probably not.. but thought I'd mention it anyway.

So, any insight mamas?

And any thought about what I can do (supps to take etc) to help with the hair loss, that would not negatively impact possible mercury poisoning situation (I know some things can cause the mercury to move around in the body), or negatively impact MTHFR situation (ie. what's the right balance to supp B vits - esp Biotin since I know that they tend to work together and too much of one can lead to a deficiency in another).

Thanks for reading my novel!

[balancedmama]

Have you had thyroid tested?

[pianojazzgirl]

Uh yes... but all I know is that the blood work came out "fine". I don't have any numbers or know exactly what they checked or anything. (It's actually a long story which I started typing out but then decided not to bother). I plan on asking more details when I see my dr next week.

[rayo de sol]

Hugs! I have a lot of the same symptoms, and I think they're mercury amalgam related too.

The mercury toxicity only shows up on hair tests (and then in an indirect way). You can order the hair test yourself online. Check the "chelating mamas" thread in the dental forum for details.

[karika]

are you currently taking any medications, supplements or vitamins? Do you ingest any foods that are not marked organic, or third party tested to ensure no GMO? Have you gotten a vaccination in the last year, or had a severe illness like mumps or scarlet fever?

[Addy's Mom]

Have you been tested for Lyme Disease?

I'd also ask for your numbers in the thyroid screen. Neither is regularly checked as part of complete blood screenings, at least not in my area, so you may not have been tested for thyroid. Almost certainly not tested for Lyme.

Get the numbers on the thyroid and do some research. Even if you are normal (and especially if you are borderline), it may be worth talking about supplementation because one person's "normal" is not necessarily within the averages. It's best to track that over time, so you begin to see what's best for you.

[pianojazzgirl]

Originally Posted by karika

are you currently taking any medications, supplements or vitamins? Do you ingest any foods that are not marked organic, or third party tested to ensure no GMO? Have you gotten a vaccination in the last year, or had a severe illness like mumps or scarlet fever?

No vax and no serious illness.

No medications. I do take (fairly regularly) probiotics, fish oil, multivit, elderberry extract (during the winter months) and vit D3 (was taking fermented CLO but ran out and couldn't afford more). I was taking extra folic acid, b12 and b6 (because of MTHFR) but have stopped them for a while as I'm waiting for the methylfolate I ordered to arrive (as opposed to folinic acid which I've read is actually worse than taking nothing for someone with MTHFR). I also sometimes take a Vit C supp (if feeling run-down or fighting off a cold etc) and sometimes drink nettle tea (during menses).

Food: we eat mostly organic. We get all our meat from a local organic farmer, and we get our veg from him in the summer and fall. In the winter we are a bit more lax and, though we try to buy organic, we sometimes buy non-organic. We eat out at restaurants a few times a week as well (usually breakfast) and I'm sure that's not organic.

[pianojazzgirl]

Originally Posted by Addy's Mom

Have you been tested for Lyme Disease?

I'd also ask for your numbers in the thyroid screen. Neither is regularly checked as part of complete blood screenings, at least not in my area, so you may not have been tested for thyroid. Almost certainly not tested for Lyme.

Get the numbers on the thyroid and do some research. Even if you are normal (and especially if you are borderline), it may be worth talking about supplementation because one person's "normal" is not necessarily within the averages. It's best to track that over time, so you begin to see what's best for you.

I'm sure I haven't been tested for Lyme disease. I've never known myself to have been bitten by a tick. Is it possible that I could have been bitten without knowing it?

I will definitely get more info from my dr re. what I've been tested for (esp thyroid). I have an in-person appointment scheduled with him in just over a week, and I have a phone appointment scheduled with him on Monday.

[pianojazzgirl]

Ok, one other thing I thought of mentioning, though I don't really see how it could be related (but what do I know, huh? ). I had a miscarriage last fall (Nov). It happened a month or month and half before the symptoms started. Just mentioning it cause maybe it (being pg) could have triggered some hormonal issues?

[pianojazzgirl]

Originally Posted by rayo de sol

Hugs! I have a lot of the same symptoms, and I think they're mercury amalgam related too.

The mercury toxicity only shows up on hair tests (and then in an indirect way). You can order the hair test yourself online. Check the "chelating mamas" thread in the dental forum for details.

What are your symptoms (if you don't mind me asking)?

I thought I had read that hair tests only show recent exposure, but blood/urine/stool tests show long-term exposure? I'm really not sure though - I've been doing so much random internet reading lately that I'm starting to lose track of all the info! I am definitely feeling overwhelmed (emotionally too).

[kjbrown92]

Originally Posted by pianojazzgirl

I'm sure I haven't been tested for Lyme disease. I've never known myself to have been bitten by a tick. Is it possible that I could have been bitten without knowing it?

I just read that 50% of people with Lyme don't remember ever being bitten...

May I ask your age? When my periods went from 55 days to 28 days (and also started sputtering on and off, at age 39, the doctor said my ovaries just weren't as good as they were when I was younger).

Magnesium (I prefer glycinate) might help with the anxiety (helps mine, I actually had mine tested and was deficient).

Also when DH had tingling on one side of his face, and had a huge workup done, they told him that they were a type of migraine (no headaches involved, just the tingling).

[pianojazzgirl]

Oh man, I totally forgot another symptom!

Heart palpitations (feels like a skipped beat or something - kind of a suddenly irregular heart beat that quickly goes back to normal). I have gotten these all my life (infrequently) but recently they've been happening way more often (pretty much every day, often many times a day). I haven't mentioned the increase to my dr yet.

I also (when pg with the pg that ended in mc) had a 15 min episode of tachycardia (so scary!). My family dr referred me to a cardiologist and I'm STILL waiting for an appointment. When my dr spoke to the cardiologist he (the cardio) wasn't too concerned and thought it was probably pg-related. But I'm thinking I should re-visit this with my dr in lieu of all my other symptoms in case they're related.

[pianojazzgirl]

Holy crap I remembered something else as well. A few months ago I found a hard lump seemingly attached to the inside of the left side of my clavicle (in the hollow of my throat). One dr (ER) thought it was a lymph node but my dr and the neuro both thought it didn't feel at all like one. I'm waiting to get an ultrasound appointment to check it out. My dr said normally he wouldn't worry about it - it seems to him like just the way my clavicle is formed, but since I'm having other weird unexplained symptoms he's going to err on the side of caution!

[pianojazzgirl]

Originally Posted by kjbrown92

I just read that 50% of people with Lyme don't remember ever being bitten...

May I ask your age? When my periods went from 55 days to 28 days (and also started sputtering on and off, at age 39, the doctor said my ovaries just weren't as good as they were when I was younger).

Magnesium (I prefer glycinate) might help with the anxiety (helps mine, I actually had mine tested and was deficient).

Also when DH had tingling on one side of his face, and had a huge workup done, they told him that they were a type of migraine (no headaches involved, just the tingling).

Thanks for the info!

To answer your question: I'll be 34 next month. I would have thought that's a bit young to be perimenopausal, but I imagine it's possible.

I guess I better bring up Lyme testing with my dr. And I'll ask if the MRI would have shown evidence of migraines (?). I know they were ruling out MS, but honestly I have no idea how these things work, so I don't know if they were looking for multiple possible problems or what.

I'm interested in the mag supplementation. Do you know if there's any counter-indication to taking it, or if there's anything else I should supp at the same time (I know sometimes over-supping in one thing can lead to a deficiency in something else). Also, do you have any dosage recs?

[Violet2]

I would definitely look at hormonal stuff. I wouldn't say you are a clear cut case but I would want to rule out PCOS for sure.

It kind of bothers me that they've done all sorts of imaging but haven't done simple lab work.

As for what supps to take I really like the Prescription for Nutritional Healing book.

Also a membership at Consumer Lab.com is worth its weight in gold.

V

[sahmmie]

Hmmm.... I have some of the same symptoms and also suffer from severe anxiety which has become almost unbearable in the last year. For me it started with a strange chest pain that comes and goes, mostly in the back but on the left side so of course I thought it was my heart. Also, I had an episode like you described of tachycardia and began having more frequent heart palpitations. I've been to the cardiologist and had tests done (thallium stress test, EKG, blood work, and ultrasound of the heart) and the doctor assures me I'm fine. Still I worry constantly.

Anyway, I did tons of research and found lots online about heart palpitations in women. Apparently it's very common and is related to estrogen and the menstrual cycle. These palpitations supposedly increase with peri-menopause. I'm over 40 so the peri-menopause possibility is very real. You are considerably younger but I think it's possible that you could be experiencing some peri-menopause symptoms.

Floaters I've read are normal for most people. Have you had your eyes checked? That would probably be a good place to start in ruling out any problems with your eyes.

Hair thinning is a classic sign of peri-menopause. So is fatigue. Nausea and headaches can also be caused by hormone fluctuations. If i were you I'd ask the doc to do the blood test that checks to see if you are in peri-menopause. It would be good to know because then you can relax and stop worrying about a lot of the symptoms.

Have you been to the gyn lately? Your cycle being different two months ago and having had a recent miscarriage are clues that some of this could be hormonal. I had a very weird cycle in January followed by some heavier than normal periods and various other symptoms and it turned out that I have fibroids and had a bleeding ovarian cyst. Cysts in the ovaries can cause all kinds of weird symptoms.

I'm not sure about the tingling. Maybe a pinched nerve? It's reassuring that your brain scans were both normal.

I hope you find the answers you need. I know how tough it is to be constantly worried about having something seriously wrong with you. Anxiety can really exacerbate any physical symptoms you have and it becomes a vicious cycle.

[pianojazzgirl]

Originally Posted by Violet2

I would definitely look at hormonal stuff. I wouldn't say you are a clear cut case but I would want to rule out PCOS for sure.

It kind of bothers me that they've done all sorts of imaging but haven't done simple lab work.

As for what supps to take I really like the Prescription for Nutritional Healing book.

Also a membership at Consumer Lab.com is worth its weight in gold.

V

My chiro has that book and I always have my nose buried in it while I'm waiting for my appointment! I should really buy a copy.

Just to clarify - I did get some blood work done when I went into the ER (and a CT scan at the same time). It's kind of a long story of miscommunication, but I didn't ask at the time everything they were testing (though the ER dr did mention "thyroid"), and then tried to ask my reg dr for the complete info but we had a weird miscommunication thing (phone messages) and all he ended up telling me was that he looked it over and everything looked "fine". So next time I see him I want to get an actual copy of the test results.

I will check out consumer lab .com - not sure what it is!

[pianojazzgirl]

sahmmie - thanks for sharing your story.

I will definitely bring up hormone testing with my dr. He doesn't yet know about my weird cycle or hair loss, and when I tell him I'm sure he would want to run those tests anyway. It seems like a lot of things I'm experiencing could be due to low progesterone (?).

For my anxiety I'm going to look into the Mag supplementation that another poster mentioned. I've already tried Rescue Remedy but it doesn't seem to do anything for me.

I was so sad today. I took the kids out to the park and it was a beautiful sunny day, but I couldn't enjoy them or the relaxing day or the fact that we were having a yummy picnic. I just couldn't get my mind off of all that's going on (esp the hair loss, which seems so trivial when compared to the possibility of having a serious illness, I feel almost guilty worrying about it. There's a baseball-sized spot at the back/top that has easily less than 50% of the hair-coverage of the rest of my head and I'm feeling so self-conscious. It's happened so quickly too. )

[Koalamom]

Originally Posted by Addy's Mom

Have you been tested for Lyme Disease?

Yes I think yoiu should get tested. Alot of your numbness and heart issues sound like me but are responding to lyme treatments.

Originally Posted by pianojazzgirl

Oh man, I totally forgot another symptom!

Heart palpitations (feels like a skipped beat or something - kind of a suddenly irregular heart beat that quickly goes back to normal). I have gotten these all my life (infrequently) but recently they've been happening way more often (pretty much every day, often many times a day). I haven't mentioned the increase to my dr yet.

Heart palpitations could mean magnesium deficiency.

Originally Posted by pianojazzgirl

I also have a LOT of amalgam in my mouth. So yup... I have a feeling like this could very well all be mercury related.

And any thought about what I can do (supps to take etc) to help with the hair loss, that would not negatively impact possible mercury poisoning situation (I know some things can cause the mercury to move around in the body), or negatively impact MTHFR situation (ie. what's the right balance to supp B vits - esp Biotin since I know that they tend to work together and too much of one can lead to a deficiency in another).

Just a note- mercury and lyme usually go together.

And B-vitamin really helped with my hair loss. My hair is really thick now and I take Lewis Labs Brewers Yeast as well as b-6.

Originally Posted by pianojazzgirl

No medications. I do take (fairly regularly) probiotics, fish oil, multivit, elderberry extract (during the winter months) and vit D3 (was taking fermented CLO but ran out and couldn't afford more). I was taking extra folic acid, b12 and b6 (because of MTHFR) but have stopped them for a while as I'm waiting for the methylfolate I ordered to arrive (as opposed to folinic acid which I've read is actually worse than taking nothing for someone with MTHFR). I also sometimes take a Vit C supp (if feeling run-down or fighting off a cold etc) and sometimes drink nettle tea (during menses).

Has the fish oil been tested for metals?

Did you notice a difference with the b-6?

What about taking molybdenum?

[pianojazzgirl]

The fish oil is molecularly distilled to remove heavy metals.

It's interesting that magnesium has been mentioned in conjunction with anxiety and heart palpitations. It definitely sounds like I should be taking a supplement.

I placed an order for B vitamins (including methylfolate and Biotin). Right now I have folic acid (apparently not so helpful for MTHFR folks), B12 and B6. I don't know if I noticed a difference from taking them, tbh. The annoying thing is that the symptoms come and go and it's kind of hard to know what's affecting them and what's not, iykwim.

molybdenum... I will have to look into! I don't know anything about it.

Lyme disease - did a little research last night and it sounds eerily familiar. It also sounds difficult to diagnose.