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Can't go on like this! What the h is wrong with me!

16 replies

LargeGlassofRed · 03/10/2011 22:07

feel Luke I'm going mad, since January have had one thing after another.

Diagnosed with sarcoidosis, and folliate deficiency, borderline aneamic, borderline thyroid. Dry eye causes by sarcoidosis.

Have had dizziness head spins for ten days.
Pins and needles in hands and feet sometimes travelling up my legs.

Hairloss
Cold easily and heat wipes me out.
Ribcage pain
Neck feels swollen, swollowing feels uncomfortable.
Periods every 2 weeks very heavy.

Have a Gp appointment on wednesday, feel awful had a GA today for a laparoscopy ?sp and dizzy ness and numbness awful.

Sorry about awful typing on my phone and fingers numb.

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LargeGlassofRed · 03/10/2011 22:26

(like)

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AttilaTheMeerkat · 04/10/2011 09:27

How are you feeling today post lap?. Lap surgery can make a person feel very uncomfortable for around 24-48 hours post op. (Why btw did they do a lap, was endometriosis suspected?).

When were your thyroid levels last checked?. I would think your underlying thyroid condition is the root cause of many of your current symptoms now (those like hairloss, heat/cold, periods every two weeks).

LargeGlassofRed · 04/10/2011 10:23

Thanks Attila, yes they wanted to check for enodometriosis, but there wasnt any. Still feel awful, have a a numb tingle tounge today too. Had my thyroid checked in August do you think it could have changed since then?

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AttilaTheMeerkat · 04/10/2011 13:14

I would hope that the GP would be checking your thyroid levels again as they can change markedly. You certainly need to give him the details of all your current symptoms. Are you on any medication re your thyroid?.

Wish you all the best re your appt tomorrow.

LargeGlassofRed · 04/10/2011 14:15

Thanks again Attila, not on any meds apart from steroid inhalour for lung sarcoidosis and eye drops.

Really hope I get somewhere tomorrow with the gp, I really need to get well soon. dp taking this week off and my mum doing all the school runs as too dizzy to drive.

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Tota1Xaos · 04/10/2011 16:47

It can take a while to recover after a GA, so not surprising you feel rotten today. Agree with Attila, that given the folate deficiency, possible anaemia and possible underactive thyroid aren't be treated, that could be causing a lot of the symptoms. There can be a link between anaemia/thyroid and heavy periods, sort of a vicious circle.

noddyholder · 04/10/2011 18:01

b12 deficiency gave me most of those. All improved once I had the injections.Esp the numbness and tingling

LargeGlassofRed · 04/10/2011 18:02

Thanks tota hopefully will go well tomorrow.

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LargeGlassofRed · 05/10/2011 21:50

Still feel rotten, saw Gp today who thinks it's neurosarcoidosis and waiting to see a neurologist soon.

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LargeGlassofRed · 12/10/2011 06:09

Just thought I'd update. I'm in hospital day 7 now, they are pretty shore it's neurosarcoidosis as have brain leasions, I'm having ling biopsy in next day of two to confirm.
Vertigo still bad and weekness and pins and needles in left side .
I'm having a tilt test today to see how the vertigo it affected.
Feeling very fed up having ever been separated from the kids for more than a night before. :-(

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ripstheirthroatoutliveupstairs · 12/10/2011 08:56

Good luck with the tilt test.
It isn't much consolation, but you are being seen and investigated which, fingers crossed will lead to treatment.
Good luck again.

LargeGlassofRed · 12/10/2011 10:52

Thanks just being assessed by physio, and he doesn't think I need one as he doesn't think it's a problem with inner ear. They're having a meeting about me today so may get more answers.

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Friendlymum67 · 12/10/2011 19:11

Good Luck LargeGlass. My dad lived with sarcoidosis for 20+ years - managed successfully with steroids. He had a wonderful consultant at the Royal Brompton Hosp.

LargeGlassofRed · 12/10/2011 19:32

Thanks, that's good to know, they were taking the other day about sending me to the royal Brompton, they are the only uk hospital with a neurosarcoidosis clinic.

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ThePumpkinofDoomandTotalCha0s · 12/10/2011 19:41

oh gosh I never dreamt that you weren't in a position to update, hope they sort out treatment soon so you can get home.

LargeGlassofRed · 13/10/2011 05:39

Thanks pumpkin

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