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Fibromyalgia Action UK

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New GP Needed Apply Here!

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Hi Have a Pituitary Tumor to go along with my Fibro&Raynauds etc which said here before Endo shoved me on Tgels/HRT which have/seemed to have caused many problems like breathing problems/High BP/high heart rate/sleeping problems or lack of sleep!/pee'ing problems/Heart racing at night/Weakness,pain in left arm/plus high pain levels.

Had while back a problem where collapsed in the street with vision problems over that weekend then everything went numb couldn't speak properly police said to P medic face kept dropping felt like been to dentist even while in hospital,couldn't move legs /arms my BP was 185/100!

Plus have problems still afterwards like memory loss and face still numb and just soo tired all the time etc

Anyway was chatting to a lady by car as was sitting with her dog as while other was shopping it was nervous of people as someone had hit with crutch! said was nice in Tesco's as aircon on so could breath as was very hot in carpark said since been on Tgels after tumor have high bp(149/95 on monday) and really struggle to breath in heat.

Said had collapsed while back and like above everything went numb slurred speech face dropped etc she said TIA then said BP was 185/100 she said deff TIA then asked what my Quack said? I said panic attack she said you need a new Quack as not looking after you if said that and don't know what doing!

She said im a specialist stroke nurse and without shadow of doubt a TIA.

Had to ring Quacks Monday as weight clinic wouldn't let me do exercise as BP too high did come down a bit on next test so did just leg raise for 2mins to check fitness? but said to ring GP's one rang me said not worried about BP(i was while back 90/60 and sub 50 heart rate) and said to her have a patch/mark like darker dry skin above ankle she said not interested as emergency phone call.

Friend that works in cafe her saw it and said get that looked at quick as that was how other guy had it and he has it all up legs he has blood problems and diabetes (said i was pre before as Family thing but got it down low again)

Don't know where patch came from about size of two pound coin it's like harder/scaly skin.

9 Replies
cathy21 profile image
cathy21

Hi

I had the stroke symptons you are talking about ladt year, was at work, got rushed to hospitel,.blue lights and everything. Got rushed straight to stroke unit had half a dozen doctors round me in minutrs, wired up closed stripped off was realy scary. But wasnt stroke turned out to be bells palsy which mimics a stroke. My face stayed like that for months, i had to tape my eye shut at nigjts cause it was paralysed open my left sideoof face down to neck totaly paralised. It was all so so scary. Face ok now apart from left eye the droop hasnt gone back and when stressed stutter and i cant smile fully. Worth adking about.

Hope you get sndwers x

TheAuthor profile image
TheAuthor

I am so genuinely sorry to read all of this and I want to sincerely wish you all the best of luck with finding the answers that you so desperately desire and deserve. This is just my personal opinion and nothing more, but if the symptoms of a TIA or anything similar happen to you again it may be advisable to pop along to A&E and let somebody else check you over to try and ascertain what is happening for you?

I want to genuinely and sincerely wish you all the best of luck.

All my hopes and dreams for you

Ken

lovelyredhead profile image
lovelyredhead

Hi ,I truly know how you feel ,I have the same brain tumour ,also iv had a Stroke ,an HEART attack, im also Dibetic ,and I have ME and FIBROMYALGIA,

I'm Asthmatic ,and under active Thyroid.

Iv got Kidney and BLADDER problems.

I alsm so suffer with a Damaged Heart ,and Spine Damaged in 4 places.

Iv had ME since 2000,I had 10 major operations ,that they think caused me to get ME ,and 8 car accidents.

The last one I was giving CPR to a man ,when a car hit me ,I stopped breathing ,lucky for me ,I started breathing after a minute or so .I'm Epileptic and I have AWFUL balance and Tremor's.

Plus Arthritis in all my joints ,and now I have the worst case of BIPOLAR and DEPRESSION,iv not been out side the house for 2 years.,But yesterday I managed to drive to my parents home to help look after my mum ,so I'm very proud of my self for doing that ,I did have a bit of a wobble ,but got through it.

Please take care ,make sure those Doctors look after you.

Iv been unlucky ,my Doctors are Crap ,I moved to Clacton on Sea ,10 years ago ,and iv not seen anyone for my ME or FIBROMYALGIA ,Iv just learned what affects me ,food has alot to do with it ,,sugar ,gluten,dark meat ,potatos ,peppers, Tomatoes,I take alot of vitamins ,that helps alot.

I do feel for you ,

Take care

Big Huggs ,love

JACQUI

Have a problem with feet to as been getting for years like blisters coming up under skin which have like a slight pus to them showed to foot clinic at hospital to ask them what they was and related to as split after a while if on edges anyway got call from quacks asked if i'd been to hospital yes i said after i deciphered questions! worked out in end foot clinic they'd written to my quack and said to get referred to Dermo place could that be related to Raynauds?

Do mark/get sores easily like if sat on chair at pc too long get sores start like spots or if things press on skin

Plus one thing that some might think funny? since been on this Tgel gear grown massive amount of breast tissues would get N getting so sore just sitting in front of pc one day like rubbing wire brush/sandpaper over them plus flakes on them lost weight but they was bigger it's actual tissue not fat as firm but need to wear a bra now all the time as if don't get more problems as get sore N's Now 44E/F but where it presses on breast bone get those sores and marked there from it but found ones better but not alone in needing/wearing either but said to them i don't mind wearing a bra but just would like some help with things!!!

Mind have many things i can't wear now as irritate me.

Asked Quack about Slocerderma to which he started spluttering about going here and there as got a referral to Royal Free ENT as my right ear isn't clear/loud as other one now as did say about if had a tumor trigger something signs are poor ear/tinnitus (which get sometimes like a fire alarm)Balance problems which have all the time loose my legs when standing sometimes so fall over or just manage not to by holding onto something! but would explain face/stroke like problems.

Anyway after winding his neck in as found didn't have marker tests sent me for blood tests now been asking for years to go to royal Free clinic as they said come or either a one off or could need reg to check my Raynauds but none want to send me.

But at the moment not getting any treatment for BP problems mind could change after Tuesday as Quacks day!

But think this is also something in Family as my sister has fibro problems my cousins are having hand problems etc but my other one they said has Meineres disease (balance problems/dizziness)Is now having similar problems as just too tired to do anything totally exhausted.

I'm wondering if to do with Menwith Hill north yorks as seems many problems and cancers in family did do a search on it and there came back with a big list of same questions! eye opening!

Have had a few episodes since the collapse but as quack said panic attack just left it as had eye problems but on right side now like shimmering lights plus started to go numb and while out friend said you don't like right and was feeling like starting again but it died down.

But keep getting like thumping headaches like been hit over head with a hammer.

But guess still alive so can't grumble!

Thank you all for kind comments.

Had my re scan on P tumor yesterday lady doing it did another test to it as said about TIA said should show things up.

Shazzzy profile image
Shazzzy

Hi oscarbravo, this also sounds similar to a hemaplegic migraine i suffered from recently, i was taken into the stroke unit as they first thought i had suffered a TIA, as the stroke nurse was saying to you. I also had 11 days of migraines out of the following 22 days, extremely painful. I was exhausted and had problems with right eye flickering and seeing flashes, very disconcerting. Hope you get some answers soon. All the best,

lovelyredhead profile image
lovelyredhead

Dear Doug ,iv had Epilepsy for 25 years ,the condition that I have DOES NOT cause seizures, and I would know when my condition was going to happen .I have been lucky to be on a drug that has worked an not cause me any problems, as long as epilepsy is controlled longer than 2 yrs you are allowed to drive.I have driven once this year ,an that was last Saturday to my parents home ,which is 10 mins away. I have been driving for 32 years ,I have always had and have a clean licance,and I'm very proud of that. I won't ever drive if I feel I'll at all ,and I don't ever drive if I'm on strong pain killers.

So thank you for your concern,.its ashame you wasn't around when I got killed giving CPR to a man ,you could have nicked the driver that hit me ,he got off Scott free.

Kind Regards.

JACQUI

lovelyredhead profile image
lovelyredhead

Well you are lucky ,I wished I could go out and about ,but with my BIPOLAR ,DEPRESSION Damaged Spine ,and ME ,FIBROMYALGIA ,Angina ,Asthma ,Diabetic ,Catheterised every 2 hrs ,I can't stand for longer than 5 mins and I can't sit for longer than 20mints ,I'm in bed all the time ,which is very boring ,I had 3 companies and 8 staff ,be for my accident ,and a £360,000 bungalow ,I lost the lot . I didn't get compensation either.

I love to go out for the day.but that's never going to happen.

Regards.

JACQUI

Hi Oscar bravo

How I can so relate to you.have raynauds,fibromyalgia,skin rashes on legs,possible pituitary problem-seeing endocrinologist on Friday.meantime Dr won't refer me to gynae until I've seen endocrinologist.despite persistent abdominal and pelvic pain and heaviness.have poor memory and forgetfulness(fibro??).told pre diabetic cos of weight but refuse to accept my weight gain is abdominal and not self inflicted.have absolutely no appetite and force myself to eat.

Also wanting to sleep more just lately,on Sunday night I noticed my legs were swollen and spent all Monday morning trying to get thru to Dr.finally did and saw Dr at 5pm.sent me straight to A &E.did tests and gave meds ,back this afternoon for scan,can t get there,2- 3 hours each way by public transport, don't meet criteria for patient transport despite having memory problems,agoraphobia. Not able to make transport journeys I don't know.

Even though I cannot walk far at moment cos leg swelling and pelvic pain.still refused transport.they said need 48 hours notice and can't guarantee getting their for appointment time.

Feeling nauseous all the time.light headed.

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