[grumpy]

hi. Neither neurologist or general practitioner (GP) has mentioned electrolytes or Co2 levels….have emailed link to your book to my GP.
Will try few days of spitting tablets in half…not easy with these sort though…
Took one 250mg yesterday and have been irritable monster today….

xx

[grumpy]

Confused…1 dose of 250mg of Diamox helps with headache the next day but not everything else related to it…but also makes me irritable with everyone,,,would taking one every other day gradually help without the side effects?
x
Grump Brian

[grumpy]

Thanks for that, Haven’t tried low salt (not that I eat a lot) or steroids. Steroids would probably sort my autoimmune kidney problem too but have had no luck getting refer because my renal function is still ok.
Will work my way through the book and find about induced chiari. Is there any particular EDS related reason why lumbar puncture pressure should appear normal even with proven high pressure symptoms?
The book. The blue bits are so hard to read that I jump past them…a change would help and should be relatively easy in a PDF shouldn’t it?

I have had 4 surgeries for other EDS related things (one worked well, the others didn’t) in the last year and another one for a shunt doesn’t appeal but am struggling so much with it all that I would do anything to sort it.

Clotting. Had two proven DVTs, last one when on Fragmin in hospital but no referral to specialist. Now on Warfarin for ever but have had trouble getting consistent level and still being tested every four or five days, quite tiresome but better than getting DVT. EDSers seem to get sticky blood problems…

On another direction: I have recently spent nearly two weeks in hospital after urology op (that didn’t help but didn’t really expect it to) and nasty infection …I really enjoyed the rest and felt much calmer. Had sudden realisation why…I was allowed to be ill and allowed not to cope…I have spent the last 20 years pretending to be normal and pretending to cope with pain, tiredness and pretending I could work too. It was so good just to just be allowed to be ill for a while.

Thanks for the book. Have past link to my lovely local doctor, the first to be interested enough to find out about EDS etc and willing to refer me to the dpctors my research has found.

All the best for Christmas.

Brian

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Hi
It’s certainly a thorough list of things for the survey but I said no to loads of things that I just do know if I have or not…. i have no idea about B12 levels or white cell counts or many other things….you need a “don’t know” option for everything as many of us suspect we have Chiari with EDS but getting it properly investigated is just impossible.
Brian UK

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Wrote long reply then website says I failed security test and its all gone….

Briefly…

V

Saw neuro after getting lots of info from EDS uk website. (theynhave good closed facebook group too) He thinks upright MRI would be good but knows trust won’t pay for them. He suggested lumbar puncture but we agreed to Diamox trial until I see him again in 6 weeks. Still no physical exam.

Diamox has reduced constant headache but am more confused, word finding harder, tinnitus much worse and still getting sharp pains on head movement/bumps in car etc. Will stick with it.

Gp confirmed that she referred me in October 2013 to NHNN London Autonomic unit. Heard nothing from them yet….but looks like the place I need to be.

Hope you get some answers and help soon.

Brian

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Barbara
Thanks. I have a copy of your head/neck mri pictures to take with me.
What I would like is a written version of the Driscoll theory as it stands now and the connection to mast cells etc. The original Driscoll theory videos mention attached documents that aren’t there any more as far as I can see. A copy of the book would be great too but I can’t find one online. I find the videos quite hard to hear clearly and they don’t stick in my befuddled brain…something written I can take to the neuro would be ideal. I have only got the help (well help is pushing it, a diagnosis of sorts is more like it) I have because I know more about EDS than my expert doctors but I find all this too complicated to explain so need papers I can send before the appt.

I know that things are progressing in the US with some acceptance of this now but like many others I have spent the last 14 years trying to get expert (!) doctors to do something for myself and for around 7 years with my now 17 year old daughter Rachel. Our 9 year old is showing some signs too but trying hard not to get her into this stupid loop until we need to. We have mannaged to get Rachel to see a chap in Plymouth who is interested in finding out more and wants to help but Plymouth is hours away so we have to do email consultations and rely on the local Paedatrician who can’t wait for her to be 18 and off his hands….

V. More information about headache trials and UK websites would be great. I hope your new neuro gets somewhere for you. I found the UK brain and spine foundation and a web chat they had about Chiari recently, they had a few questions about the connection to EDS which were not answered well except they mentioned that more work needs doing with this….I suspect Chiari = EDS but the whole world think EDS is so rare that it doesn’t even pop into their heads.

Your Japanese saying is spot on. I feel very sad for people who can’t seem to live without a beer and people who have been well all there lives who want to be bumped off if someone has to look after them when they get old. I have a wonderful life despite all this as I have a best friend for a wife and the most lovely two girls. I count myself extremely lucky as I am also convinced the dodgy genes that give me EDS also give the ability to do many creative things that others can’t. If I didn’t have EDS then I wouldn’t be me.

Thanks for replying, Dr Driscoll’s theory is clearly the way forward for us all, but many of us need help now and can’t wait for peer acceptance and official publication. I just want someone to be convinced enough to let me try Diamox for a few days…

Brian

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I am also in the UK and finding impossible to get help for myself and daughter. We all need a written page we can point our doctors to.
I am aware we are all ill and struggling but we can’t get help without information for our doctors. The videos are fine in themselves but they mention attached papers that aren’t there anymore.
I have recently had head and neck MRIs, the neck one has obvious problems but the head of course shows no obvious reason for my symptoms….I have an appointment with the neurologist on 28th April and I need the information now so I can get him to look at the right things and to take the right decisions about treatment.

I am fantastically grateful that this mess of symptoms has been tied together by Dr Diana, would love to be in the US and have a way to take part in trials, to physically help and would love to purchase the information I need. Life is falling apart for us both and I need information now.

Sorry about my “tone” it’s not meant to be critical in any way but at 4AM awake with splitting head it’s hard to get the nuances right.

Thanks.

Brian

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Fundus photos…loccum optician suggests they are more or less normal.

Thoughts?
Graham

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[grumpy]

Sounds like a plan, Graham! Diamox is only a mild diuretic, but GREAT if they’ll go for it! I’m almost ready to begin writing to get this in peer-reviewed journals (it can be torture — editors usually like NUMEROUS rewrites, if they accept it at all. Wish me luck!). Once it’s in journals, you shouldn’t have this battle any more… No worries on the art contest — I think it needs to be a “regular” — maybe every 6 months, don’t you? Big hug…

Good luck indeed. There’s lots of EDSers out there who need help and doctors aren’t helping at all yet.
6 monthly art contest would be cool, probably have about 100 years worth of entries ready to go though…;)

Been ill is so boring and hard, why does getting help have to be such a battle just when you aren’t up to battling?
Graham

Attached files

[grumpy]

Hi
I have been told all my life that my posture is to blame, “sit up and get your head over our shoulders” I wonder what it feels like to naturally have good posture?
Collar looks like a sensible thing to try, would it be worth trying just at night? It’s a big step to wear one outside during the day (and even in front of my kids) ; it will show the whole world that I am actually ill and I will have to explain it over and over again to all those people who currently think I am well. Will talk to my GP about it.

Will definitely try to get soft copies of everything from now on.

Sitting in a coffee shop trying to turn the Symptom check sheet into a list of my symptoms for the GP appt tomorrow.

Graham

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Thank you.
I have a rough plan…GP appointment booked for Wednesday. I need a “water tablet” as I am currently doing very little wee during day and loads overnight (would you believe 1.5L – eds sized bladder – half way through the night and often fainting during self Cath as it takes so long), so will suggest that Diamox may well do both jobs as a test for both problems.

GP has referred me to Prof Mathias so will write to him with full list of symptoms and links to your pages before the appointment. He has been very helpful with my daughter and we have exchanged emails so may well be able to get some long distance advice before seeing him.

I had my eyes tested last week and will try opticians again this morning to see if they can do Fundus photo (don’t Fundus make frozen food?) and if they don’t do it then I will pay for test with the optician Barbara mentioned.

Have been extremely fed up over the weekend because as I now suspect CSF problems may be the cause of the trouble I have had for years but I also know it will be a huge mountain to climb to get anyone to really run with it. I also had to admit to my father in law that I am really just too ill to do enough work to support my family, we have managed to hide it from him by living off my redundancy money but it has all but run out now and the trouble is that it brought it home to me too.

Thanks for being understanding voices. Wish I’d found you years ago and especially wish I’d found you before the closing date for the art competition….

xx

Graham

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Sorry to reply to my own post but missed something Barbara mentioned..

Useful Medical Tests would be:
Neuro-opthalmologists assessment to look for Swollen Optic Disk (sign of raised intracranial pressure). If found, then a course of Diamox should help, it certainly did for me.
Neuro-otological assessment to look for any other causes

How do you go about getting these referrals? I suspect both are at centres covering the whole country?

Thanks

[grumpy]

Hi
Feels like I have come home at last…people who understand…
Thank you both. I will fill in the Symptom checklist when next on the PC (ipad won’t open it to edit), it’s an interesting list that includes many things I have trouble with but hadn’t necessarily linked. Very interested to see what my symptoms point to.

Headaches: Looking down makes it worse but I have periods where it is just a nagging constant thing and periods where it is awful. These awful times are normally brought on by an unexpected bump, stepped off a curb I didn’t see or a bump in the car. They are at the back of my head but hit me behind the eyes. I have seen a physio after neck MRI (2 or 3 prolapsed disks) and she eventually helped by moving my head on my neck for me , she thought to get it tracking properly. Generally it is at the nagging constant low level – compared to when it is horrid rather than compared to no headache – state until I do bump it and then it gets horrid for a few weeks. It’s generally worse at night (hence sitting here typing at 5.30 am) It has become one of things I put up with it and I have given up mentioning it to doctors.
Have wanted a neck brace to try for years but have never convinced anyone to let me have one. I use bandages a lot for pain relief elswhere (Profore #4 cohesive is amazingly useful for ankles, fingers etc) but necks are not something you can bandage…

Dizziness: vertigo. dizziness on head movement, especially in bed when turning over but feel slightly dizzy all the time just moving my head. Had all the normal physio stuff for inner ear problems and it hasn’t touched it so given up trying to fix it. Procloperazone helps with the constant nausea.

MRI: I had a head MRI about 10 years ago to rule out MS, no idea what it showed except neurologist said I didn’t have MS. How do I convince my Rheumotologist to refer me for a head MRI and to see to a neuro again? how do I get a copy of the pictures and raw data? What is a ciny MRI?

I saw Prof Grahame in London once last year after 12 years of battling locally but have no follow ups as my Reumo used to work with him. Unfortunately the only thing she ever does is check my Beighton score, it’s the only thing she has. I did convince her to refer me to the local autonomic “expert” but he was completely uninterested just as he was with my daughter.

I have got to the point where I have given up on the head symptoms. My life has fallen apart mostly because of them, my plans to make a go of my own business after being made redundant have floundered as how can you be creative and run your own shop with constant jont pain, headaches and tiredness? I am one of the many who are too ill to make a real go of things but not ill in the right way to get help. The UK NHS is geared up for obvious things that need operations to fix not middle aged men with invisble problems that take time and thought. I have managed to be referred for some of the joint problems, (had a bone taken out of my thumb to help with the arthritis and seeing Ortho about impinged hips ) and I have at last found a GP who is keen on finding out more about EDS, she has been great with the urinary problems and with getting my daughter seen in London. She is trying to get us both compression tights and she has also referred me to Prof Mathias (UK PoTS expert) but the waiting list is huge.

My 16 year old daughter has at last been to see Prof Mathias in London about her autonomic problems and been diagnosed with EDS too. Hopefully she will get some help now.

Sorry had enough typing…sorry it’s a bit all over the place…like me really….will fill in the symptom sheet. Attached another pic or two.
THANKS
Graham

Attached files

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