Never asked before,could really do with some words and hugs.

[pulisa]

The reason I asked about ENT was due to the dizziness etc. The cold feet and hands plus facial numbness could be anxiety-related in view of your A&E emergency trip. Do you still have these symptoms?

I don't want to say I hope the MRCP comes up with something but I hope it gives you some answers because you've got a lot of physical stuff going on and haven't got a diagnosis despite a variety of tests and consultants saying "we don't know" .

I would stick with your surgeon who arranged the MRCP and when you see him for the results push for an urgent endoscopy in view of your weight loss and the amount of time you have been left undiagnosed and with obvious gastro symptoms. You shouldn't have to wait long for an endoscopy especially if you stress how long you have been having symptoms and how you are thinking of taking things further with a formal complaint etc.

Feel free to rant away!

[BikerMatt]

I still have the off balance and dzziness. I've had it continuos since the end of July non stop. I've not driven since then, it's that bad. When i sit down it's like the seat is bouncing, when i stand up it's like somebody is sitting on shoulders whilst somebody is trying to pull my feet from under me, when i lay down it's like the bed is a swing or it's being tipped up. My hands are warmer but my feet are still stone cold. The vascular consultant fully checked my circulation and my results were slap bang in the middle of the normal range. I still get a little bit of numbness in my face. Don't really know about my blood pressure. I can put up with my gastro issues and pain but the off balance is horrific.

I really hope the MRCP shows something to be honest and i had my letter within 3 days of my surgeon consultation so i know he's on the ball and was glad that he said he is going to see me again after my tests, again this is not his job but he seemed efficient. The gastro tried to discharge me after a CT scan and that was going to be it.

I know that all of my symptoms can be caused by anxiety but i can 100% say i've got some not so good health things going on and i know it's not anxiety related. Yes i'm super anxious at the mo and had my 1st panic attack in years this morning, but no bloody wonder.

Thanks Pulisa

[pulisa]

So it's not vertigo but is related to position changes and has been constant for months? I'm not surprised you aren't prepared to risk driving. That's really weird about your circulation being normal- I have Raynaud's and that is much worse when I'm stressed.

I hope you would have heard by now if there was something really urgent on the scan but I'd start phoning up about your follow up appointment. Make a nuisance of yourself? For your own sanity you need to know what's shown up on the scan and what's the next move.

[BikerMatt]

So it's not vertigo but is related to position changes and has been constant for months? I'm not surprised you aren't prepared to risk driving. That's really weird about your circulation being normal- I have Raynaud's and that is much worse when I'm stressed.

I hope you would have heard by now if there was something really urgent on the scan but I'd start phoning up about your follow up appointment. Make a nuisance of yourself? For your own sanity you need to know what's shown up on the scan and what's the next move.

Is Raynaud's related to circulation? If so does it make your extremities cold?

Yes the radiologist said my results would be 2 weeks. It will be 2 weeks this Wednesday so i will call tomorrow to get the ball rolling. I suppose i will phone the surgeons secretary. I doubt she is allowed to say anything but it will get the ball rolling.

Yes it's horrific the off balance and dizziness. It also when i'm sitting feels like someone is pushing me in the back or i'm being pushed back into the seat. It's been unrelenting.

I bet your Husbands watching the Masters?

Thanks Pulisa.

---------- Post added at 21:11 ---------- Previous post was at 21:04 ----------

Yes Pulisa it's been constant since the last Friday in July.

---------- Post added 09-04-18 at 00:39 ---------- Previous post was 08-04-18 at 21:11 ----------

I have suffered depression for 25 years so know how bad it is for you and tbh it's not just a money issue with the NHS its a lot more besides like in your case theres no urgency about it even your surgeon was shocked how little was done by the gastro person but bet it wasn't followed up and looked in to that's a lot of weight lost over a year which could be caused by stress yeah like I said try and find a hospital (private) which is funded by the nhs often the same consultants will work in the NHS and also the private sector too, Find you choices and options and take it from there
ATB

Thanks Dave, I know plenty of people who work within the NHS and the amount of money that's wasted that they tell me about is a joke.

---------- Post added at 00:50 ---------- Previous post was at 00:39 ----------

Matt,

I'm really sorry to hear you've hit another "pass the parcel" job. It must be incredibly frustrating. When you are so ill the last thing you need it to be chasing around the NHS to do their jobs. When I relapsed I had to chase my therapy around between different parties with referrals and it just feels like there is no ownership at times with the NHS. I was lucky to drop on a nurse, who I suspect thought I was being dumped onto them knowing it wasn't the right pathway, who chasing people around and got me a result.

Sadly we do have to push doctors at times or they sit back. My parents have had that a few times and had to keep going to the GP until he/she rang elsewhere to push doctors at the other side as to what is going on. Hospitals just discharge us but the GP has to own the patient the rest of the time and I think they should be pushed to chase things up for us.

Is there any help from the NHS here? I guess it would mean raising a complaint though and I can completely understand how that might be just too much right now.

Given the situation with your weight you can understand the specialist wanting to rule out cancer but I live in hope this is only about ruling out because losing so much weight over a year and this going on so long makes me think you would be very ill. I know you feel like crap a lot but I just feel like you would be very seriously ill after 12 months if it's shedding the weight off you like that. It's just a guess based on the stories of others I've known who were very ill with cancer and without treatment they would have snowballed much more.

I hope that's not upsetting to hear? It just feels like a possibility that points elsewhere.

Don't be daft asking for help on here mate, you give to others and others will give back to you because of that.

Keep having a laugh with us on the lighter threads if it helps even a little bit.

Terry, Thanks for such a detailed well thought out reply

I really don't understand how my weight loss has just been palmed off by GP's and the Gastro. It's worrying but at least i now have the surgeon on my side who was very good, but it really isn't his job to sort out these investigations i've got to get through.

Thanks Mate and for the

[KK77]

That's really weird about your circulation being normal- I have Raynaud's and that is much worse when I'm stressed.

Do you also have tinnitus by any chance, Pulisa?

Raynaud's Syndrome is a nerve disorder causing blood vessels to go into spasm, I believe, thereby restricting blood flow to extremities.

You are a brave chap, Matt. You've certainly got a lot going on right now and I wish you well. Chins up, old boy

[pulisa]

Do you also have tinnitus by any chance, Pulisa?

Raynaud's Syndrome is a nerve disorder causing blood vessels to go into spasm, I believe, thereby restricting blood flow to extremities.

You are a brave chap, Matt. You've certainly got a lot going on right now and I wish you well. Chins up, old boy

Well I have a low level tinnitus which is more obvious if I think about it but it's no big deal, KK. The Raynaud's is very annoying but only affects my fingers and toes.

Are you seeing a General Surgeon or one with a speciality, Matt?

[BikerMatt]

Do you also have tinnitus by any chance, Pulisa?

Raynaud's Syndrome is a nerve disorder causing blood vessels to go into spasm, I believe, thereby restricting blood flow to extremities.

You are a brave chap, Matt. You've certainly got a lot going on right now and I wish you well. Chins up, old boy

Thanks KK it means a lot.
I'm not brave i'm bricking everything and it's all set my anxiety off big time

---------- Post added at 16:00 ---------- Previous post was at 15:58 ----------

Well I have a low level tinnitus which is more obvious if I think about it but it's no big deal, KK. The Raynaud's is very annoying but only affects my fingers and toes.

Are you seeing a General Surgeon or one with a speciality, Matt?

General surgeon, but the guy i saw at the end of Feb was the surgeons registrar. To be honest he was more on the ball than Gastro though.

---------- Post added at 16:10 ---------- Previous post was at 16:00 ----------

I phoned the general surgery secretary today, no results yet. She told me that the 2 week wait for the results that i was told was very optimistic. She also told me she can't tell me the results anyway which i thought would be the case. What a pain in the a#s#!

[Magic]

Honestly, The NHS is in a terrible state. Had a lift from the bust stop this morning.
The lady told me she was waiting for the results of her brain MRI results.
Takes up to sixteen weeks for results!!!!!!
Good Luck BM x

[BikerMatt]

Honestly, The NHS is in a terrible state. Had a lift from the bust stop this morning.
The lady told me she was waiting for the results of her brain MRI results.
Takes up to sixteen weeks for results!!!!!!
Good Luck BM x

Thanks Magic, Yep it's crap!!

My Mum is 77, she was diagnosed with a heart valve problem through an echo last May but didn't get to see a cardiologist until the Autumn. He referred her for a heart CT scan which she waited about 14 weeks for. She then waited until January to see the cardiologist again who said they could control her problem with meds, but he had to write to her GP for him to prescribe. Guess when she got her prescription................... last f###### week!!!!

Nearly a year from 1st diagnosis to work out and prescribe a course of action!!!!

---------- Post added at 19:20 ---------- Previous post was at 19:18 ----------

Oh and i think she waited about 4 months for the echo in the first place!!!

[pulisa]

Do you have to wait for the surgeon's secretary to contact you to make an appointment with him? If so what a pain. I can't see why things take so long to come back-I suppose the only consolation is that you would be seen quickly if anything really alarming had shown up.