What are your STRANGEST symptoms?

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What are your STRANGEST symptoms?

Postby DrDiana » Tue Jul 12, 2011 5:44 pm

I'm digging deep into M.S., and wonder if you could share your strangest symptoms, whether or not you are certain they're related to M.S.?

OK, I'll start -- my fingernails are flattening, some are turning under, I have times of severe hair loss that then goes away.

OK. Your turn....

thank you!
:)
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Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
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Postby lyndacarol » Tue Jul 12, 2011 6:45 pm

Dr. Diana – a few years ago I also lost hair over a period of several months. I attributed it to Avonex, which I was taking at the time; but now I wonder if I was having problems with the thyroid (I did not have the gland checked.).

The hair loss has stopped, but I have frequent, icy cold extremities. As I understand it, this can also be due to a thyroid problem. I have had no "clubbing" of my fingernails, but my nails are brittle from time to time – thyroid again?

Have your thyroid hormones been checked?
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Postby DrDiana » Tue Jul 12, 2011 10:47 pm

Hi Lindacarol,
With Ehlers-Danlos, we tend to get "endocrinology gone wild", so yes, I have my thyroid checked quite often.

I'm just wondering what "strange effects" MS patients may have (who DON'T have EDS)? By comparing notes on that, we may be able to find answers sooner and learn about contributing factors, etc.

Thank you so much for your input!
:)
Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
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Strange symptoms

Postby Alexandra » Tue Jul 12, 2011 11:41 pm

HI Dr. Diana,

I had severe hair loss last year on Avonex to the point that I almost got bold. Then the hair growth started. This year, on Betaferon, I am again having bad hair loss. So I am not sure if it is the interferons or the MS.

Another symptom that bothers me a lot is that if I talk on the phone, or put my foot under me, more precisely any movement of the body (except when laying down), will lead to numbness after short while and then to pins and needles. The doctors can't say if this is because of interferons or it is MS.

A very strange symptom that I have is of blocked ear (like in the airplane) toghether with lots of dizziness, but no hearing loss.

Wish you all lots of health
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Re: What are your STRANGEST symptoms?

Postby NHE » Wed Jul 13, 2011 1:49 am

DrDiana wrote:OK, I'll start -- my fingernails are flattening, some are turning under, I have times of severe hair loss that then goes away.


I have developed longitudinal ridges in my fingernails. They have been notable for the last few years. I don't recall ever having them before. I tried doing some searches on fingernail ridges a while back but didn't come up with much except that they're associated with "inflammatory" conditons. Not like that information was of any help...


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Postby maynaka » Wed Jul 13, 2011 9:48 am

I have always had fine hair but it gradually started to thin out around the crown of my head (not a good look for a woman)! I just always associated it with genetics; my mom had very fine hair. I never thought it could be MS related...hmm..that would explain why my two sisters have massive amounts of hair.

I have been taking a product call Hair Factor by Twinlabs. It's the only biotin product I've tried that works. They are horse pills, so I t two in my smoothie. I'm on my second bottle and am about to start my third. I no longer see scalp there when I check it in the mirror. Also, my part line is not as wide.

I do not own stock in the company, or in any way affiliated with the company.

M
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Postby DrDiana » Wed Jul 13, 2011 11:38 am

Thank you, NHE,

This is the kind of information that if we all share, we may be able to figure out more common links.

I'm right there with you on the longitudinal nails!

Oh, I'll add petechia to my weird stuff. I know we've had some threads on that before, but it may be a clue!
:)
Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
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Postby DrDiana » Wed Jul 13, 2011 11:39 am

Thanks, Maynaka,

It will be interesting to see how many others share the same symptom!
Thank you!
:)
Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
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Postby tara97 » Wed Jul 13, 2011 12:05 pm

my nails are groovy too. and with white spots=zinc def. they also break apart. my hair which is dishwater blond has curly black hairs sprouting out of the top of my head. the spookyest symptom was either the sense that I could no longer push air out of my lungs or the time when my shoulders froze in the contracted possition.
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Re: What are your STRANGEST symptoms?

Postby euphoniaa » Thu Jul 14, 2011 4:36 am

Ah, DrDiana, strange symptoms are my whole life! I've been accumulating them for my entire life (38 years of it with MS) and I've chronicled my (absolutely true) experiences in glorious detail on dozens (100's?) of threads here.

Still, I can't pin a single one of them directly to MS. With the unique way each of us is hit with MS, combined with our age & other medical conditions, not to mention the variety of meds/supplements we take, it's pretty difficult to identify patterns.

But it's a great plan, so...good luck with that! :D

NHE wrote:I have developed longitudinal ridges in my fingernails. They have been notable for the last few years. I don't recall ever having them before. NHE


There's no point in re-telling all my stories here, but I do have to comment on NHE's post about nail ridges, which, coincidentally, is one of the symptoms I added to my Official Daily Symptom Charts about a year ago.

True to my usual habit of reacting to anything I swallow, I noticed the nail ridges after I started taking vitamin D (working up to 4000 IU) and then added B12 (1000 mcg) a couple weeks later. Within a month or 2, I made a note on my chart, "nail ridges from new vitamins?", since vitamins were the only obvious change I'd made in my life. Every month since, I've made a new note, "Nail ridges from vitamins – worse," and they are.

This was just an observation about myself, not a diagnosis. But I'm much more positive about another effect specifically from B12. The day after I started it, the left side of my scalp started tingling (several times a day) with enough intensity that it spread over my body, making me shiver until I peed my pants. It has gradually lessened over the last few months, but it's still there (right now, for instance).

Then there's the Flaxseed Finger Episode, the epic Recurrent Osteosciatic Spasmodic Twisty Nerve Syndrome Events, the Itch & Twitch, the One-Jolt Clonus. Oh yeah, for awhile, years ago, every Restless Leg spasm ended with 5 rhythmic kicks.

Strange enough for you yet? :)

P.S. You knew I'd have to stop in to this thread, didn't you?
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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