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

(17 Posts)
LargeGlassofRed Mon 03-Oct-11 22:07:25

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.

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.

LargeGlassofRed Mon 03-Oct-11 22:26:35


AttilaTheMeerkat Tue 04-Oct-11 09:27:40

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 Tue 04-Oct-11 10:23:17

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?

AttilaTheMeerkat Tue 04-Oct-11 13:14:33

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 Tue 04-Oct-11 14:15:23

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.

Tota1Xaos Tue 04-Oct-11 16:47:44

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 Tue 04-Oct-11 18:01:19

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

LargeGlassofRed Tue 04-Oct-11 18:02:41

Thanks tota hopefully will go well tomorrow.

LargeGlassofRed Wed 05-Oct-11 21:50:48

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

LargeGlassofRed Wed 12-Oct-11 06:09:38

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. :-(

ripstheirthroatoutliveupstairs Wed 12-Oct-11 08:56:15

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 Wed 12-Oct-11 10:52:18

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.

Friendlymum67 Wed 12-Oct-11 19:11:18

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 Wed 12-Oct-11 19:32:31

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.

ThePumpkinofDoomandTotalCha0s Wed 12-Oct-11 19:41:38

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 Thu 13-Oct-11 05:39:49

Thanks pumpkin

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