OneGuyFromBarlick

Overnight and this morning, I have all the symptoms of a head cold and sinus infection. It’s amazing how a couple of Paracetamol can relieve a lot of the misery though! I shall be having a quiet day with plenty of fluids...
Goodness knows where I got this with all the social distancing and hand washing!

"( I am a great one for ignoring things)"
So am I Maz. My first reaction to things like that (and they happen) is to go to bed and see if I wake up and how I feel. I am told repeatedly this is wrong but funny thing is that it has got me this far... So far so good!

Marilyn wrote: ↑14 Oct 2020, 22:23 Goodness knows where I got this with all the social distancing and hand washing!

Put it down to Panspermia.

I had to look Panspermia up, Smarty Pants.
I know what “pan” means, but I was a bit concerned about the “spermia” bit...
( didn’t want to become pregnant on top of a cold/sinus infection)

Marilyn wrote: ↑14 Oct 2020, 22:23 Overnight and this morning, I have all the symptoms of a head cold and sinus infection...

I've had bouts like that during the pandemic, Maz, but they were due to hay fever and responded well to Beconase nasal spray.

Well, whatever it is/was, I have spent a great portion of my day on the loo and haven’t eaten much, though I have had about 3litres of water.
But...I feel a lot better...I really do. Still feel like I have a head cold, but the rest of me will be “right as rain” by morning I reckon .
It has all been quite cleansing, whatever it was!

Its that infrequent visitor to the Medical Thread again. As I said in my last post, I had an appointment with the Neurologist on Tuesday. Hoping for an answer to what this condition is. No go I'm afraid. He ruled out Parkinsons which he assures me is a good thing. He doesn't know what it is I;d need to have a muscle biopsy to get a better idea, reading between the lines I get the impression there is a low chance of any convincing treatment if they did know. He has left it up to me, I call him if I decide I want to go ahead with the muscle biopsy, He's advised against it whilst Covid19 is still on the go and he says I'll suffer with it anyhow if don't get imfected with something and theres a good chance it isn't going to achieve much if I do go ahead. I get to play dice and I'll need a pair of sixes for a favourable out come and I'll be worse off if I throw 5 or under......

I was a bit down yesterday or I'd have posted yesterday. Ho hum.

In my meningioma support group (Brain Trust now), Neurologists get a bit of stick from some of the tumour patients who have been put on watch and wait and have been put under their care rather than a neurosurgery team. A common complaint or observation is that they seem to do a lot of "passing the buck" or playing down symptoms refusing to accept in some cases that seizures, headaches, vertigo and loss of muscle function are linked to to tumour position or growth! Glad I was put directly under the surgical team rather than passed to a Neurologist.

If I was you I would be pressing for another opinion. Putting the ball back in you court for a testing plan that by their own admission is probably not going to be successful or relevant is not good enough. You need better than this Stephen you are still a youngish bloke and should not be abandoned. Time to become a bit awkward it's your life!

PanBiker wrote: ↑15 Oct 2020, 10:19 If I was you I would be pressing for another opinion. Putting the ball back in you court for a testing plan that by their own admission is probably not going to be successful or relevant is not good enough. You need better than this Stephen you are still a youngish bloke and should not be abandoned. Time to become a bit awkward it's your life!

Sounds like you've been fobbed off even if they are telling the truth. If you haven't been accepted for further treatment and not on any waiting list, then you are off the NHS radar. We know the NHS is under pressure but it isn't a reason not to accept a patient for investigation. You plainly have something wrong with you and when you know what it is then you can deal with it. Like Ian says, I'd opt for further investigation and get some information about your problem. Good luck, Stephen.

It doesn’t sound right to me either Pluggy. They should find out at what level your degeneration is coming from, be it peripheral muscles or deep nerves ( not just with a muscle biopsy, but with electrical stimulation/conduction tests).
I think we all feel for you. No wonder your happy thoughts have gone AWOL.

Stephen, it's beyond my pay grade of course but I think all the above opinions sound about right. You definitely deserve better. I think my first route would be to go back to my GP and ask his opinion on the grounds that you have not had a satisfactory answer or even a fair crack of the whip. The other thing that strikes me is that you are not the first to experience whatever it is and there will be an organisation out there somewhere that can help but how you find it when you can't even identify is a bit of a puzzle. Time for the Taylforth brain to go into overdrive!
Get angry and fight the buggers!

One other thing that struck me is, which side of the border are you, Lancashire or Yorkshire trusts? We can ask for either route in Barlick. I have always favoured the Airedale side and beyond as it turned out for me, never let us down. Neurosurgery, head, spine and Neurology centre of excellence is at LGI. Have you been seen by the team in the AAU at Airedale?

I didn’t post straight away Pluggy because I am really feeling for you. It’s hard to know what to advise. But... This isn’t fair. Make them know that, pester them, kick butt!
If you keep on at it, somebody somewhere will help you to get the treatment you need.
All the best.

Marilyn wrote: ↑16 Oct 2020, 00:47 It doesn’t sound right to me either Pluggy. They should find out at what level your degeneration is coming from, be it peripheral muscles or deep nerves ( not just with a muscle biopsy, but with electrical stimulation/conduction tests).
I think we all feel for you. No wonder your happy thoughts have gone AWOL.

Already had EMG https://en.wikipedia.org/wiki/Electromy ... omyography which is what I think you're referring too. It raised as many questions as answers. I've already had a second opinion of sorts, my mother had what appeared to be the same condition, diagnosed and treated under a seperate Hospital (Blackpool) she was given a diagnosis of IBM (Inclusion Body Mysoitis) but there was some doubt. Theres no real treatment. Its certainly a neuro-muscular aliment which is a quagmire of different conditions and symptoms.

I've got the positves back. After a period of being down. Being recently accepted for the enhanced rate of PIP helped. It pays almost as much as I was earning mending computers.

Pluggy wrote: ↑16 Oct 2020, 12:19 I've already had a second opinion of sorts, my mother had what appeared to be the same condition, diagnosed and treated under a seperate Hospital (Blackpool) she was given a diagnosis of IBM (Inclusion Body Mysoitis) but there was some doubt. There is no real treatment. Its certainly a neuro-muscular ailment which is a quagmire of different conditions and symptoms.

I've got the positives back after a period of being down. Being recently accepted for the enhanced rate of PIP helped. It pays almost as much as I was earning mending computers.

Good news about your PIP payments but a bit of a shocker with HIBM. I'd never heard of this condition but have now looked it up on the internet. It says there are medicines available to help you cope with the symptoms. Nag your GP to get some help, don't suffer needlessly. Best wishes for the future.

I see that one of the only things that can help (apart from medication) is exercise to maintain muscle tone and increase stamina. I would assume you would need a physio regime set by a suitable expert in that field. Stick at it Stephen and I would agree that your first port of call is back to your GP.

I know there is a strong case for this to be linked to your mothers condition. Having said that, you are not your mother and you did indicate that the medics were not certain of that diagnosis either. I still think you need more information and a more definitive answer, how can you tackle it without?

I am not comfortable with people giving medical advice for a condition which I guess they had never heard of until Pluggy mentioned it today. I've been deeply involved with a similar, but unrelated condition (not in myself) for over 30 years. It's very tough.

Stephen is intelligent enough to read what information (and there seems to be plenty) is out there, and doesn't need people on here to recommend courses of action. I know from experience, he will have already read it all. I am pleased he will get full PIP - it's good to remove some of the financial pressure.

Stephen I wish you the best, and I hope no one is offended with what I say. Your reaction is perfectly understandable. It's just a word from someone who has 'been there'.

That was a good post David and I agree. I would say though that based on experience, I agree with Ian, the Yorkshire choice if it exists would be my favourite.
Whatever it is it's a bugger Stephen. You will be in my prayers if that's any consolation.
I'm glad you have regained your positives, at the moment that is your best line of defence! KBO!

I am living in what is currently the worse place in Ireland, Ballyjamesduff Co. Cavan for covid19, i am in theory trapped in my own house, no visitors etc, but i have 2 dogs, 2 cats and a donkey so i'm not lonely conversations are limited though

Love your Spirit Bodger

Believe me when I say you have ALL the conversation and love that you need by the sounds of it Bodger. ( having recently lost son’s beautiful Labrador, we are really feeling the hole in our lives! )

Spooky! I have just written about talking to animals elsewhere. The cats don't respond much Bodge but I'll bet the donkey is good value. I love donkeys!
One interesting thing I discovered about donkeys. I used to deliver bulk skim milk to Moorside Dairy in Bradford which was a milk farm. I noticed that there was a donkey grazing with the cattle and at milking time it came in with them and was fed. I asked why and was told it was a 'well known fact' that of you had a donkey grazing with Attested Cattle they never got infected. I arrived one day and told them that their donkey was laid in the field with its feet in the air. Next time I went they had a new donkey.

The problem with donkeys, is that they take up so much room on the couch...

See THIS New Scientist article on research into micro particles of plastic found when using plastic feeding bottles for infants. If I was a mother I would switch to glass immediately!