Auntie Bee is falling apart! Not just POTTY but a... - PMRGCAuk

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Auntie Bee is falling apart! Not just POTTY but a case of the SANRTs!! Anyone else with this tachycardia , or just me and the Bin of Doom!

Blearyeyed
Blearyeyed
83 Replies

Hello Folks , just thought I'd send you an update from a very wet and windy North Wales.

I finally received a letter from the Cardiology Department this morning , five weeks after my follow up appointment , confirming POTS . Not that anybody reading my posts on the forum would have been suprised at me being POTTY , but even my heart rate was taking exception to me doing silly things like standing still or sitting up .

It also turns out that my Cardiac System was clearly so jealous about the rest of my body getting all the attention for its various uncommon Chronic Conditions , that it has decided to have not one , but two rarer Heart Conditions of its own. Along with Postural Orthostatic Tachycardia Syndrome , I also have a case of the SANRTs.

I did wonder at first whether my Cardiologist was suffering from Dyslexia and had gone into cahoots with the Neurologist and had tried to diagnose me with another illness based on a Lewis Carroll book.

I had already been diagnosed with Alice in Wonderland Syndrome , a form of migraine headaches that makes you see things as bigger , smaller or different than what they really are . Now , perhaps my Heart Doctor, did not want to be outdone and wanted to go Hunting for the elusive SNARK around my circulatory system .

Having a bunch of much loved Children's Characters racing around my body could explain a few things.

The aches , pains , creaks and groans in my body and various whizz bangs in my head and ears could be mistaken through a stethoscope as the soundtrack to an episode of 'Wacky Races' . I should have guessed years ago really that I could have been Medically misdrawn by Hanna Barbera as if I laugh too heartily I have always sounded like that lovable sidekick to Dick Dastardly , Mutley.

Yet no , the spelling was not Wonderlandian and SANRT stands for 'Sinoatrial Nodal Re-entrant Tachycardia' . Yes , Auntie Bee is trying to outdo herself again and has managed to get another unusual Chronic Condition that hardly anyone has ever heard of!

This could be part of the cause of my Dysautonomia and POTS and it involves a constant tachycardia between 100/150 beats a minute caused by a possible malfunction or malformation of the Sinus Node which differs from Atrial Fibrillation and other Atrial Ventricular Tachycardia issues because of the difference in pattern change in P Waves. Unfortunately , the drug I am taking for POTS may not be enough alone to get this in order , which is probably why I'm still stuck on bed rest as my circulation has concluded that the en trend colour for hands and feet this Winter should be Alien Blue ( at least if I get asked to play Jack Frost in a forthcoming Christmas Panto I won't need any stage make up , there's always an upside!)

I'm back for another 24 hour ECG next week , although I think the good old Blood Pressure Monitor might need to be dusted off too so I can finally put this set of symptoms to bed , and then hopefully I can get up off it .

I would be interested to hear if any other GCA/ PMR sufferers have been diagnosed with SANRT , or POTS , too , and if the symptoms began at the same time as the GCA/ PMR , or sometime after beginning medication.

I will , of course , keep you all in the loop as things progress , and if you have any tips about how I can stop adding to my ever growing list of Uncommon Illnesses and Syndromes I would greatly appreciate it . Although extreme treatments suggestions like jumping off Menai Bridge , or chopping off my head ( an injury which , despite Nannys insistence on 'Blackadder' , cannot be fixed with a bit of ointment ) will be answered with a Paddington style Hard Stare. 😋😂😂😂

Unlike my month long Cold on the Chest , kindly donated to me via a Kiss of Death from my eldest daughter , I'm pretty sure SANRT is not contagious , but I'm not sure the ' Bin of Doom ' agrees and has decided to suffer from it too.

As , in the high winds last night , it took the opportunity ( while my Family were away of course) to suffer yet another Psychotic episode , or sudden case of Acute Anxiety Disorder , fled across the drive , into the back garden and decided to try and climb the ornamental cherry tree. The shudders and screams of the shivering black devil were so loud that I was forced to leave my bed at 3am in order to save my neighbours from a night of Hell and go outside to retrieve it.

I am on that many drugs now that I probably could have rolled over and slept through it as even the Pred induced insomnia is finding it hard to hold its own in light of all my new magical and mystical symptoms but the guilt of keeping the rest of the village awake all night was too much to bear.

I prodded it numerous times with a damp stick and shone a torch into its eyes just to make sure it was willing to bow to submission. I definitely did not want to be nearly eaten by it a third time , especially in the middle of the night and with the others away , I've tempted Fate enough. It seemed to realise that I was getting enough abuse on the inside and decided to behave itself more sensibly for a change , so I was lucky enough to get it back in its spot quite quickly and returned , somewhat soggily , to bed.

Well , there's another unusual exercise to add onto my physiotherapy Activity Diary , it can fit quite aptly in the list of things that trigger moments of Acute Joint Pain , like trying to change the case on my extra large body pillow , putting on my compression clothing, and the multiple extra trips to the toilet required by the amount of fluids I have to drink to help reduce the POTS.

Who knew Pacing Yourself with PMR and the Rest would actually mean taking rests after rescuing bins , wobbles for a wee, and putting the sort of tights on that would put Yellow Bluebells Tiny Wedding Spanx to shame. At least I haven't fallen into a washing basket ..... Yet !!!

Hope that everyone is keeping warm and above all cheerful , no matter what horrors your PMR , GCA and other Chronic Illnesses are throwing at you.

Big hugs to all , and keep looking for those Silver Linings , no matter how small they may be , love Bleary-eyed aka Auntie Bee xxx

83 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Some people are just too greedy for their own good. 😳😂🤣😂-

but I’m sure in your case it a matter of don’t want it, don’t want it, don’t want it!

Just hang on to your sense of the ridiculous- that and your sense humour will get you through most things! Even rampaging dustbins! ❤️

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Blearyeyed

I'm trying my best , although as you say , there are some gifts I have been given lately that I would happily give back!

Take care yourself , do you think that this is some sort of revenge via the NHS , just like GCA and PMR , to those of Scandinavian descent for the years of Viking invasions centuries ago ? I do wonder....😋😂😂😂😘

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DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Blearyeyed

Could well be...but I don’t know that any part of the UK government or its departments nowadays has the mental capacity to work out anything as clever as that!

All too busy knifing each other in the back and talking bo@@?&s!

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Yellowbluebell
YellowbluebellModerator
in reply to DorsetLady

She just cant help herself! She has to have everything and even her bloody bins a nightmare!!

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KellyInTexas

Yes, I have Dysautonomia/POTS.

I’m trying to include a link for you, but my iPhone is playing up, so I’ll give you the information for you to look up.

Please google Dr Sanjay Gupta, a Interventional cardiologist in Yorke. ( sorry he’s in England- would have been better if he were in Wales... but I do have good news for you!)

Good news is:

1. His special interest is POTS

2. He is young! What does this mean? He loves to post to you tube and all sorts of social media... great news for you! He has a face book page. Try to join it. From the comfort of your own home you can learn a lot.

3. See if you can find his Oct 12 2019 ( just last month) presentation he gave to a small group on POTS. It was recorded. It was at a hotel small conference room in Yorke. I think he posted it on his Facebook page. ( I found out about it through the charity I’m involved with for a Hughes syndrome- all of us pretty much have dysautonomia- Ehlers Danlos, Sjögren’s syndrome, all go hand in hand with Hughes Syndrome- Also known as Anti Phospholipid Syndrome.)

4. I have a cardiologist In San Antonio Texas ( very near where I live) who had told me everything he had said. she stressed the importance of not becoming de conditioned. A stationary recombinant bicycle is what she recommends. Swimming she said would be very good, but I have epilepsy That is not yet fully under control so we are careful.

With PMR plus your other heart issues, i imagine a deconditioning regime will be highly individualized just to your body. Your doctor will guide you wisely I assume. Maybe just walking, keep on keeping on!

I was diagnosed via tilt table testing. My pots is not very severe. I feel very luck it is not. My dysautonomia presents itself in other fun ways. ( like gastro paresis.)

I do encourage you to ,” meet” this doctor Gupta!

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Blearyeyed

Thank you very much for the info.

I've been reading through various articles , I'm on the POTS and Dysautonomia International Boards and have the Dysautonomia Project Book which is very easy to read and helpful .

I've had POTS for a number of years but it has been controlled until about 6 months after the GCA by exercise and self care.

I have Ehlers Danlos too , and am waiting to get back to the Rheumatologist to be sent to the CoE in London for EDS and Genetic Testing.

I have a feeling that the SANRT has something to do with the EDS and has been made worse by the GCA , and is likely a genetic issue passed to me from my Father's side of the Family, Cardiac issues and Marfan's were things they had .

My GP, unfortunately , couldn't guide a ruler along a straight line with a map and full set of instructions but I have started to get some luck in having one of the only Physiotherapists

( actually the only Medical Professional I have seen so far!!) who has a interest and specialism in Chronic Pain and the Autonomic Nervous System. He is using me to help him create a tailor made programme of exercise and self care for Dysautonomia as part of other Chronic Pain Disorders . It's about the only piece of luck I've had so far.

Good luck with your mission to succeed over the House of Chronic Health Cards , it really is a full time job isn't it! xxx

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KellyInTexas

Ok, I can help you with Ehlers Danlos also.

( I also have Ehlers Danlos.) all part of the connective tissue “not holding together properly” variety.

I’m not particularly “h” variety- or hyper mobile. Mine is more integrity of veins and connective tissue that holds muscles in place. When I was only 18 months old I had bi lateral inguinal hernia repair... very odd for a toddler! My mother nothiced while bathing me I had goose eggs 🥚 protrude out- then pop back in place. That kind of thing. Other surgeries have been similar— umbilical hernias- repairs not ,”taking”...

I’m out the door right now- off to San Antonio for a hematology follow up. Will find links for you that are very important for you.

In the mean time google Dr Jill Schofield. She’s in Colorado, USA. She is my “specialty “ APS consultant. She trained in London at the London Lupus Centre under Dr Graham Hughes. She is also a POTS / Dysautonomia specialist, as it goes hand in hand with APS.

She and Dr Hughes give a speech in Nachville I believe on behalf of Dysautonomia I termational. It’s a patient led awareness group led by an attorney ( barrister) who is a patient of Dr Jill Schofield’s. They are a force of nature in that they raise awareness and even provide grant money they raise through awareness for research . They help young doctors get a head start on research.

Have a look also on Dr Jill Schofield’s personal website. ( on East Lowery Street in Denver Colorado.) Center for multi system disease. There is a link in her site to that video.

They are Vimeo platform videos.

Let me know if you have trouble.

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scats
scats
in reply to KellyInTexas

Fabulous info Kelly! I never thought we'd find another Blearyeyed, I thought she was a one off!

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KellyInTexas
KellyInTexas
in reply to scats

Oh no... there’s a whole forum of us! ( remember... I’m just a very lucky stray cat here you lovely ladies are kind enough to bring in and shelter ! )

... totally educating me on prednisone. That’s been my request which you have so graciously extended. I have polyarthropathy- and Rheum Arthritis- and a Vasculitis if someone kind- so I’m in your box but not fully. I don’t need such high doses. But I may need for many years. We are not sure yet. I may have neuro Behçet...but no ulcers. We are NOT sure.

I spoke to my doctor ( GP yesterday) again about this forum. His wife - 38- also has lupus nephritis.

PMR pro- he asked where you taught - I told him UK. He asked if you still teach medical students- and in what field of medicine? I told him I didn’t know but assume you are retired. He is super grateful. He might have a few questions .( he thought you were here in USA.) i can PM you if we are going off topic- which we are.

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scats
scats
in reply to KellyInTexas

It must be something special about the condition, but as soon as you appeared here your replies reminded me of Bee's, so informed and willing to help others!

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Blearyeyed
Blearyeyed
in reply to scats

It's the amount of years we have been juggling with many chronic conditions that has given us a bucket load of tips to share with others. Of course , if we could have just learnt it from a book like a Doctor instead of the hard way through bitter experience In sure we would have been alot happier.

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Yellowbluebell
YellowbluebellModerator
in reply to KellyInTexas

She still works and was over in the states earlier this year.x

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KellyInTexas

I’m still working also- (fortunately I have flexibility with hours and a great staff) so if bleary eyes in ever in Texas- I’ll show her some lone star pride! ( I’ll keep her away from bins...)

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Yellowbluebell
YellowbluebellModerator
in reply to KellyInTexas

Sorry i thought you meant pmrpro. Bee cant work unfortunately. X

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Yellowbluebell
YellowbluebellModerator
in reply to KellyInTexas

God help.america if bee gets there! She would probably get sent home very quickly

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Blearyeyed

I am hoping to get things under control Health-wise so that I can get back to working , the symptoms are preventing my work as a Land and Nature Artist , and also because I was eager to take the opportunity now my children are finally Fledging to travel the World.

I'd love to visit America and the Lone Star State , and I have it as a Mission to get well enough to be able to drop in for coffee around the World with my Faraway Friends on the Forum .

Its a shame you don't have runaway bins though , I have become so skilled at corralling my own I could have done an exhibition of UK Bin Wrangling at a rodeo to entertain you all 😋😂😂😂😂😍

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Yellowbluebell
YellowbluebellModerator
in reply to KellyInTexas

We were hoping she was a one off to be honest. More than one of bee is a scary thought. Do you have delinquent bins as well?

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Yellowbluebell
YellowbluebellModerator
in reply to KellyInTexas

Not off topic at all as far as i am concerned x

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KellyInTexas

Very funny! Nope.

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Blearyeyed

The silver lining was that at least when they were monitoring my Uvietis I had a superb Opthamologist whom didn't follow the rule book when she saw symptoms of GCA , got me checked and it was caught before I had the potential sight loss that could have happened.

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Blearyeyed

I was not diagnosed with Dysautonomia / POTS or the EDS and Hypermobility until I went for tests for Behcets at a CoE . Despite seeing two Rheumatologists and Skeletal and Jaw specialists and telling them all my symptoms over a period of more than eleven years nobody ever considered asking me to do a Beighton test!

I did have ulcers and ulcer scars , Uvietis and the Neuro symptoms but they concluded that it was all of the above plus Fibro and Recurrent Apthous Stomatis Syndrome.

They wanted me to go to an Autonomic Clinic in London because of my various Dysautonomia symptoms , the Gastro ( Gastro paresis / slow motility and Pseudo Bowel Obstruction ) and Gynae ones were things that caused the most issues first and caused me to have an early full hysterectomy and gall bladder removal. But , they could not refer me straight through to there or the EDS clinic because I am in Wales and they couldn't approve the funding . Sending me back through the Welsh system , feels like I'm starting all over again to get to be referred where I need to be , and eventually get approval for Biologic Therapy . It's very frustrating , this allegedly intensive diagnostic thing has been going on for two years and things just seem to be getting worse because of inefficient treatment and communication between not just Regions but Departments and Doctors involved.

The Behcets Centre highly recommended Genetic Testing because the Welsh NHS will not treat as EDS , but only as Hypermobile Spectrum Disorder , until this is checked again by their own Rheumatologists , and the Consultants in Liverpool said with my vascular like and oral symptoms that they think it is likely to be Periodontal EDS , they were as frustrated by the situation as I am.

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Blearyeyed

So you potentially have the issue that I have too.

If you have Vasculitis or GCA/ PMR the " Go To" lifesaver is Pred to manage it , and you may be like me and not be intolerant to it so technically it can work for you , but long term use of steroids can be damaging for those with Ehlers Danlos because of the effect on our already faulty Collagen production and Collagen receptors , so use of alternatives to steroids is recommended in any Treatment for EDS sufferers.

What's good for the Goose is not good for the Gander , and getting the right diagnosis is imperative to make sure that you can access the more expensive Biologic Therapy in order to be able to help manage the long term outcome of both conditions with success and without storing up trouble for the Future.

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KellyInTexas

Lots to learn-

Thank you.

Yes. I do have Vasculitis- but we are not exactly sure what it is.

Believe it or not my Hematologist and I were talking about the remote possibility if Behçet’s today! And the lead of all places came from your hospital in Liverpool about two weeks ago. Our lives do seem to be intertwined at the moment! It’s seen at the oral medicine division there.

The form of Behçet that I might have is neuro- Behçet. I do not have any of the hallmark ulcers anywhere, but most every thing else fits. However, there is a thing called ,” cerebral APS” and a lupus Vasculitis. I could just have both of those and not neuro Behçet. ( I have horrific optic nerve atrophy due to small strokes, epilepsy, hallucinations if my blood is not thinned enough, CIDP, ( my limbs feel like they don’t quite belong on my body) , I have mal debarquement syndrome, I’ve had cerebral sinus venous thrombosis, and multiple DVT’s - bi lateral upper extremities.

Classic with APS, I’ve had multiple miscarriages. (8). 2 live healthy children.

Im on massive amounts of warfarin and heparin.,

I’m also currently on Rituximab. ( biologics.) - not great success so far.

So far steroids have been the best help.

I did not know about the collagen issue and steroids.

I’m to follow through on possible neuro Behçet with neurologist. My heme thinks this will be the best starting place, not Rheumatoligist.

It could be azathioprine would be a better bet. It was discussed as a possibility once before. I was tested and I can take it. The feeling was by my heme that Rituximab might still be the better bet when weighing out risk vs benefit. ( like you say- goose vs gander.)

We will stay in touch over this. I do not have GCA. This is not the Vasculitis I have. ( just to be clear.)

We have ( at least I do) much to learn about Vasculitis and steroids.

Its APS that I know quite a bit about . But always so much more to learn.

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Blearyeyed

Definitely keep in touch by PM whenever you want.

After spending over a year going through the assessments with Prof. Moots and the gang at the Liverpool CoE I will know whom you are talking about , not just what, as I have done ALOT of reading on Behcets too.

The thought was possibly Neuro Behcets for Me too , but I also had Uvietis and Ulcers and skin issues, as well as the Neuro symptoms , but I still wasn't diagnosed with it . The criteria they set themselves in the CoE Clinics is far more concerned with the Ulcers than anything else , even if that isn't the guidance in the International Criteria , which some have them actually helped advise creating??!

It may be better in the US , but in the UK from my conversations with other Behcets sufferers at the Clinic and on the Forum getting a Neuro only diagnosis is like catching a unicorn in the supermarket carpark , and even when the Behcets CoE confirms any sort of diagnosis there are many patients going back to start local treatment and having their Local Teams try to overturn any Behcets decision.

What I have noticed in reading up on EDS, GCA, Dysautonomia and your Hughes Syndrome , is that many of the symptoms are mainly triggered by the same pattern of autoimmunity or seem similar because of the Dysautonomic involvement.

The list of medications are often the same too for most Chronic Condition with autoinflammatory or autoimmune characteristics.

You may do well with Azathioprine or Methotrexate because they are also used to alleviate the symptoms of the different conditions too , including Lupus and Behcets. I unfortunately found after my TMPT blood test that I have low tolerance for these steroid sparers so couldn't take a high enough dose to treat the symptoms without having severe side effects.

The Biologic is the next step to go , but there is just such a heck of a journey to get there in the UK because of its expense.

That is definitely one thing the US system seems to have over the UK , there is less awareness of certain issues but more willingness to try the new , more expensive treatments without too much delay when things are not moving as expected.

Please Keep in Touch xxx

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KellyInTexas

We do have a very rigorous protocol to get biologics approved also. I’m having a delay getting Sub cutaneous IG right now. Likely is not getting approved despite two doctors working together to get it. That’s what is slated next if Rituximab shown no great improvement. ( six months so far and not great.)

I’ve only been aware of neuro Behçets for about two weeks- and it’s only a possibility.

My skin keeps erupting out in the Vasculitis like rashes- but in small areas. Not all over the legs. Smaller patches. It’s been written in my chart as lupus Vasculitis, Or leucocytoclastic Vasculitis. ( but no oral or genital ulcers so it may not be Behçets. )

My rheumatoid factor is 512, where 7 is the highest normal limit.

Progressive and refractory APS with early CAPS is why I was put on the Rituximab. Full CAPS is life threatening and urgently needs Rituximab.

All these qualify here fur Rituximab, especially when added up together.

And right here, this girl- full emergency hysterectomy, cystocele, rectocele, enterocele, all at the same time ...2014 . We now know EHlers Danlos. I was 44? 45? Pelvic floor prolapse.

And- gall bladder - out. No stones. Low ejection fraction. Age 29 ( gastro paresis and also bowel clotting)

Also appendicitis- same reasons.

How is your thyroid? You must have the full panel. T3, T4 as well as TSH checked. Blue Horizons and maybe a company called medi checks offers a good package price- they run special deals on certain days - check for that- ( not sure if on offer in Wales)

Sounds like you have a good C of E looking after you in general- and GP checking your vitamins and minerals are up to range for an auto immune patient? Vitamin D-3 so important , along with B12 and folic acid. We tend to be low in these.

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Blearyeyed

No , now that it isn't Behcets you get discharged from that CoE , that's why they wanted the other referrals done so that diagnosis by Specialists would continue without more local delays , but they couldn't push the GP to approve the Autonomic Clinic and I have to wait to see the Rheumy again for transfer to the EDS CoE.

I have a Opthamologist , the new Cardiologist and a Physio at the moment .

My GP surgery is borderline useless and actually covered up a recommended change in Pain Medication and didn't organise a follow up on the Pain Management Clinic to be able to get away with not signing off on giving me the more expensive Meds back in 2012 ( oh, they apparently forgot to update on the system , although the fact that I asked them six times in a year to double check the PM Clinic appointment has also been forgotten and not written in my records).

They checked my Thyroid , except antibodies , despite having abnormal Rev T4 and Thyroid like symptoms , which is standard across the NHS , you are a Lotto winner if they will shell out on Thyroid antibodies tests. I was cleared for Pheochromocytoma though and had my Parathyroid test.

You can only have one Vitamin D test a year , even if your results are deficient , as mine are , as they assume that the Vit D supplements will work so they won't go to the expense to check it. I had one at Liverpool though then one in Wales three months later , it was still deficient but still Laboratory guidelines rejected another test . My Folic Acid , B vitamins etc. All Abnormal low , and high bad cholesterol , despite a good diet which I've had since before my Gall Bladder removal. All of these abnormalities became more acute since GCA and the Dysautomia symptoms. It is also a struggle to get them to check any other Vitamin or Electrolyte levels below age 50 in the UK , pushing for this year's annual tests and my Flu Jab are two of next week's tasks at the GP , while having my ECG , I wonder what results will show up on the tape during that 15 minutes.

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PMRpro
PMRproModerator
in reply to KellyInTexas

I only taught medical students English! My husband taught medical students science ...

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KellyInTexas
KellyInTexas
in reply to PMRpro

Got it now👍

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Yellowbluebell
YellowbluebellModerator
in reply to KellyInTexas

Brill info for our Blearyeyed. Hope it helps her get the treatment she desperately needs. I often have to resist the urge to descend on wales just to kick her gp.x

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KellyInTexas

No kidding! Scotland is no better shape as I understand it. Scottish born doctors get a highly specialized medical education ( not sure where ? Glasgow? ) never to be bothered to cross back into Scotland again as I understand it. But I’m not sure I understand it correctly at all.

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Highlandtiger

To be fair to Scottish doctors, like everywhere else, some are good, others are not. I’m blessed with a GP who has a very open mind and lets me educate him (indeed he positively encourages me to) with things I’ve learned on here (and we do have quite a few medical faculties in our various universities not just Glasgow!). And some stay and some go. My niece is a Scottish educated A+E doctor who latterly worked in England (where boyfriend came from) but got so fed up with the English NHS under a particular health secretary she’s now moved to NZ..... But I may have misunderstood your point! 🤔 I’m currently more concerned about all our lovely European doctors who are leaving.....

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Blearyeyed

Yes there are good and bad Doctors everywhere .

The issue with us being in the region's is that we don't get the same pariety of service in terms of getting access to Specialist Services .

The referral system has meant many delays in my diagnosis because the English CoE I was originally sent to was not allowed to refer me on to another Unit because I was a Welsh Patient and they did not have the permission to to send me on because of Funding coming from a different part of the NHS.

The same is happening for Chronic Illness Patients across Wales , Scotland and Northern Ireland , adding years to diagnosis.

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Highlandtiger

Ah, ok, thanks, I think I did misunderstand the point! 🥴

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KellyInTexas

❤️😊it’s affecting many auto immune patients, especially those with very difficult lupus cases involving the kidneys. The only , “ Center of Excellence “ is in Glasgow as I ( very barely) understand it, but it’s not always easy to get a referral.

I think it’s known as the post code lottery in the British isles.

The NHS works brilliantly for so very many things. I have a British friend she says it so well I think. “ Poor old NHS.”

(We have our troubles here also. Nothing is without its glitches, and glitches we are having aplenty. )

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Highlandtiger

Ah, ok, I understand now. 🙂

Yes the NHS generally works brilliantly when there’s an emergency like a serious road traffic accident or whatever but can often struggle on chronic health issues particularly complex ones like you’ve mentioned.

And it’s not going to get any better anytime soon I fear......

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HeronNS
HeronNS
in reply to Blearyeyed

Sounds like medically speaking the United Kingdom is really the Disunited Kingdom.

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Highlandtiger

Yep. And in lots of other ways too.........

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Blearyeyed
Blearyeyed
in reply to HeronNS

Yes , I've been chatting to people on the Lupus forum about getting Equal Access for Services , and also , my friend, the Chair of the Behcets Society , about how it seems that all less common Chronic Multi System Conditions are experiencing this regional problem.

I suggested that it might be an idea to work together , with all the Charities for Illnesses that need Specialist Centres for Care and Diagnosis petitioning Central Government as One rather than taking the fight for each Disease separately to be discussed , so that Westminster can see this is a Systemic Problem not just one associated with a particular illness . They are more likely to sit up and make steps if they can't divide and conquer.

To be honest , on this particular occasion it is not Central Governments fault

( Doesn't that make a change!) but a problem that has arisen since Devolution to Assembly Governments and separating the control of NHS funding for Services under each of these Assemblies .

The Assemblies are making the choices on approvals and referral rules and causing Local Services to choose Local over Most Appropriate under the disguise of using Welsh, Scottish and N. Ireland Funding Fairly , rather than in truth, Bean Counting.

Free Prescriptions and Free Parking mask some very big inequalities in overall Care from UK regions.

Working with Westminster to address it and get MP support behind correcting the inequality will definitely get quicker results than trying to deal with the Regional Governments .

Unfortunately , as Patients you don't find the truth of this out until you are potentially half way down the line of getting Care , or a Diagnosis , maybe years into trying to get help , and then , because you already feel too Ill , tired or stressed to do anymore than cope with your symptoms you haven't got the fight in you to complain and cope with the years of battling to get your Equal Medical rights too.

That's why it would be good for the Charities and Support Organisations team up to communicate and work together on sorting this out so that the Patients , like Me , don't have to .

The fortunate thing about GCA/ PMR in this is that although the Doctors are often clueless about it at first , after diagnosis the treatment can be more straightforward , just through the GP and maybe the Opthamologist, if you are lucky. Some of the other Chronic Conditions , like Lupus , Behcets , Ehlers Danlos , MS , Parkinson's , Cystic Fibrosis , Dysautonomia and Fibro can take three or more Specialist Departments to be involved in ongoing Care . If it's done at a Specialist Centre , you see all the right Specialists at once , and then they discuss your ongoing tests and treatments together , straight away bringing continuity and speed to your Care.

It's easier to get to see a Centre of Excellence ( most are in England) if the GP can refer you because they are Centrally funded anyway , so as soon as you point out to the Doctor it doesn't cost them a Bean they are more than happy to refer.

The issues arise with Centres that are Specialist but not Centrally funded CoEs , then you have a fight on your hands to be sent over the border even if Local Services do not have the people you need , such as with my Dysautonomia there are no Local Autonomic Services in Wales or Specific Specialists in most of the UK , that's why England sends to London.

Unfortunately , it also comes as some of the CoEs also have rules that require that you have seen a NHS and not Private Consultant first to be referred to them .

This adds to the delays in diagnosis and treatment , as if you were originally recommended to go to one by another English Unit they cannot refer you on , or you have to go through a delay on the waiting list to see a Local Specialist ( like a

" middle man" or Travel Agent) and then have the wait to be referred on again . Sometimes , I have heard they won't make the referral out of region even then , not based on needs , or funding , but you know from the attitudes of the Doctor involved that they see it as a slur on their " Professional Integrity and Skills" to be asked for these referrals.

Unlike with food purchases and the climate though , in Chronic Care , buying Local isn't always best.

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PMRpro
PMRproModerator
in reply to HeronNS

It is - each country has separate rules and governance

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KellyInTexas

I have heard of a good lawyer in the UK if you need one... if you decide to do it!

She’s a mean chonkers player- she means business!

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Yellowbluebell
YellowbluebellModerator
in reply to KellyInTexas

Must meet her sometime!! I always thought the nhs was the same in england scotland and wales but it totally different and unfortunately bee is getting the rough end of all.this as nhs wales dont want to pay for the tests or the medication she needs. They wont refer to nhs england either. Makes.my blood boil. Not only because it wrong its happening at all but also because shes a friend and i want her to get what she needs. So maddeningx

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Blearyeyed

I've already hired YB on a retainer of making her giggle as she is our go to Legal Eagle working to make the NHS a fairer place on the forum.

I am very tempted to let her loose on my local services , especially one particular GP!

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Yellowbluebell
YellowbluebellModerator
in reply to Blearyeyed

Trouble was the last time you and scats made me giggle i was in crown court!!

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Blearyeyed

What's chonkers?

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KellyInTexas

A misspelling on my part. Is it conkers? She posted about it- so I took it upon myself to google. And that’s when I learned all about it! Apparently here in the states we call them buck eyes or horse chestnuts.

As far as I know, we have no such game as conkers. ( a conversation ensued and I learned all about it... even a video about the world championship conkers championship game... 😂 in very funny consumes. Good fun!

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Blearyeyed

Yes a very British Autumn past time.

I don't think you were with us last Christmas but I wrote a cheering post about the Festive version we play here atcthe Home my friends and family call , ' The Asylum' , called Spronkers , and how GCA/ PMR had meant I wouldn't be Queen of the Spronkers again any time soon.

It's a very hard and hotly won battle to win a much coveted title 😋😂😂

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Yellowbluebell

My spanx were not that small believe me!! They looked like the bloomers my gran wore but i still couldnt get the things on!! It doesnt surprise me that you have added a few more illnesses to your growing list. You really are a greedy person!!! Even your bins are delinquent.xx

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Blearyeyed

I know I think I should report it to the Council and get them to give it an ASBO!

Although , I hear you have been entertaining your own neighbours again , so there might be one going your way too. 😋😂😂😂

I'm surprised you have the energy as you are going through enough aches and pains yourself lately , I hope that you get some answers soon xxx

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Yellowbluebell
YellowbluebellModerator
in reply to Blearyeyed

I couldn't believe i flashed the postman or the neighbours but if the blasted postman had been quicker scanning my parcels he wouldn't have been subjected to such horrific sights!! Just as well it was a relief postman as not sure our regular young postman would have coped seeing any of my wobbly bits. I blame pmr for my antics but to be honest i have bever been sedate or normal. Its probably why we are friends.😜🥳😜

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Blearyeyed

You'll probably be the talk of the postal depot this afternoon and have a queue of posties all delivering individual letters for weeks to come!😋😂😂😂

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Yellowbluebell
YellowbluebellModerator
in reply to Blearyeyed

Must go on ebay and order some more stuff just to create enough post!! Wouldnt want anyone to feel.left out!

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Smokeygirl

Ohhhh dearest Bee—— I’m so so sorry! As if you haven’t got enough to cope with already! You are always so cheerful and helpful—- it’s just not fair!

Please explain the Bin of Doom! Is it a bin lid, an actual bin or a black cat!🤣🤣🤣 you are so funny even in adversity!

Huge hugs and love and BE WELL! xxxxxx

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Blearyeyed

If you fancy a bit more cheering up and press on my skeleton icon , you will go to my profile page .

Scroll down the posts there are two other posts that mention my adventures with the ' Bin of Doom' , episodes 1and 2, and how it proves to me that GCA/ PMR have made it possible for the pesky thing to try and get one over on me.

Thanks for the support , and don't forget , never turn your back on a big black bin!😋😂😂😘

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Smokeygirl

Hysterical! 🤣🤣🤣😘😘😘

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Yellowbluebell
YellowbluebellModerator
in reply to Smokeygirl

Shes the only person i know who has out of control bins!! Normal people dont have to chase their bins!!

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Smokeygirl

🤣🤣🤣🤪

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HeronNS

I can't "like" this post. But I must say you do paint an awesome picture of yourself, the Queen of Uncommon Chronic Conditions Nobody Has Ever Heard Of.

Hugs.

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Blearyeyed
Blearyeyed
in reply to HeronNS

Sounds like a great Children's book idea , it could be a sequel to 'George's Marvellous Medicine' , I'd love to see what I would look like drawn by Quentin Blake. To be honest , with the amount of compression clothes and braces and a pair of sunglasses he's got one heck of a model to work from , arghh!!!😋😂😂😂😘

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Thelmarina

Dear lovely Blearyeyed you are a star - in fact five - ⭐️⭐️⭐️⭐️⭐️. I am so sad that you have to add BBI (Black Binitis) to your other acronyms but at least on a good day you’ll have a container to fall into when your other conditions play up. Tally ho! ❤️

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Blearyeyed

As I said to Smokey Girl if you press my skeleton icon you will go to my profile and down on the list of posts are two stories about how , ' I was nearly eaten by a bin' , it's a Devil , and knows how to pick on a Girl when she's down! Hugs xx

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Yellowbluebell
YellowbluebellModerator
in reply to Thelmarina

Oh please dont encourage her. Next thing you know she will have harnessed the bin to some thing and be hurtling around the village!!

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Thelmarina

Perhaps we should sell the idea to Dr Who. Time those Daleks were laid to rest!

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Yellowbluebell
YellowbluebellModerator
in reply to Thelmarina

😂🤣

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Highlandtiger

I’m so glad you’ve kept your sense of humour even with all this going on and are posting again. Your posts are always a highlight of the forum. x

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Blearyeyed

Thank you so much , it actually helps me stay positive and sane through these more trying times.

Take care xx

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Freshmimt

Blearyeyed you are a star x

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Louisepenygraig

I nearly messaged you to ask how the bin were the other day when it was really windy! Now I know. Do you have trolibocses for recycling on the Island? I could imagine you having great fun with those if you did.

I think you really need to give your body a good talking to and let it know you have quite enough different ailments to be going on with now and then ask it very nicely to get rid of some of them. Give your bin a good talking to while you're at it as well!

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Blearyeyed

I did think about putting some of my many ailments in the recycling bins but knowing how much they won't accept already I was pretty sure they'd just give them back again!

Luckily the recycling trolley is more well behaved , the Bin of Doom just didn't appreciate it and hasn't been the same since I tried to throw my Restless Leg Syndrome away in it.

Keeps me on my toes though , hugs xxx

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SheffieldJane

Hugging you back! Firmly! X

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Blearyeyed

How,are things with you SJ , I hope a lot brighter ?

Hugs back xxx

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SheffieldJane

I just need to adjust my expectations. One bound and she was free ain’t going to happen, sadly.

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Blearyeyed

I know exactly what you mean , it feels like one step forward and two steps back here at the moment and so much more adjusting to do in my life expectations with every new thing that comes along. In my case it's one bound to the loo and then she was free to cool back down with her feet up for the near future .

Saying that the winds blowing up a storm again , so who knows , I could be bounding out into the garden to save the Bin again. xxx

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MamaBeagle

Oh, Bee! What a catalogue of catastrophes to conspire to collide when you are feeling so grim! Does your list of illnesses mean that you have this Multiple Autoimmune Syndrome I've been reading about?

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Blearyeyed

They have not searched for that yet , I'm just keeping busy trying to get them working on rubber stamping the stuff I definitely do have at the moment , all the mini uncommon syndromes seem to be adding up on the way to getting to the main objectives.

I can't believe I just called a minor heart defects , a mini issue!!😨

Flipping heck you know how far you've come down this Chronic Illness Road when you brush off something that will last for Life as just another tick on the List , I've even just shocked myself!!

I will look it up , but no , it has not been mentioned and probably wouldn't be until I get back to a Unit that may have some idea of what is going on. I do have a symptom or syndrome under every letter for the alphabet now except Q , unless you let me use 'Queasy' or 'Quite Bonkers ', so I will peak your curiosity at what my M's might be 😋

I did love the onomatopoiea in your reply though , cheered me up no end.

Big hugs from the Queen of Uncommon Conditions to the Mother of Beagles ( you can tell I'm box setting Game of Thrones at the moment can't you 😂😂😂) xxx

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Jackoh

I think it’s about time your body started to play ball and give you a bit of rest!!

Don’t know anything really about the two new conditions you have now acquired . Eldest daughter(46) has just had an ablation for SVTs ( supra ventricular tachycardia) and that’s my only experience. She suffered a lot with this before the ablation so you have my deepest respect for all that you seem to be suffering from at the moment. Yes keep looking for the silver linings and so enjoy your humour which I admire considering all that’s going on for you. Xx

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Blearyeyed
Blearyeyed
in reply to Jackoh

Yes , your Daughter's SVT is a Condition that's very similar , it seems that the SANRT is just from an organic and probably genetic cause rather than damage or Neurological signalling issues. Ablation is one of the potential future procedures for Me too if the medication doesn't sort things out.

As I have been suffering with this , I know how your daughter must have been struggling , my heart goes out to her , please send her my hugs and I hope that the Ablation brings long term success.

If you could start a Forum Petition to send to my Body demanding that it stops Falling Apart I would much appreciate it , I'd try anything at the moment if it had a chance of working.

Hugs xxx

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PMRpro
PMRproModerator
in reply to Blearyeyed

How about a whole body transplant?????

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Blearyeyed
Blearyeyed
in reply to PMRpro

Body and Head please , perhaps you could just turn me into a Dippy Computer like Holly in Red Dwarf 😋😂😂😂

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Jackoh

Yes if I thought it would work would start the petition!!

Thanks for your good wishes to daughter, Zoe. It’s early days but she is so so much better so I do hope something can be sorted for you. Take care, especially round those bins! 😱xx

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PMRpro
PMRproModerator

Beware - I have simple old boring SSS atrial fibrillation caused by the a/i part of PMR - but OH swears I gave a/f to him ...

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Blearyeyed
Blearyeyed
in reply to PMRpro

😨😨😨😨 perhaps I did give it to the bin , no wonder it keeps attacking !

Hugs xxx

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Dontwannabesick

Oh Bee! So sorry to hear about your latest developments. It's a good job your tongue in cheek humour is there to help you through. Hugs. xx

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