Claytons update

[rb]

This is a Claytons update because I don't have the energy for a real once. Hence point form:

• I don't have mitochondrial disease. This is very very good, but leaves me with the diagnoses of ME/CFS, Ehlers-Danlos Syndrome, and all the associated complications like NMH, POTS, etc., which are sorta sucky diagnoses as doctors will run a mile to avoid a patient like me. But I don't have mito, so there's hope for me yet!


• I do have a bunch of whacky spine weirdnesses which I don't quite understand. I have to go see a spine doctor about it - it showed up in the spinal cord part of my MRI, and the PDF of the report will be up on my website for a few weeks at least. Can any of you medical people explain it all to me? Don't have enough spoons to look it all up!


• I seem to have Yet Another Virus which means I have now been sicker-than-usual for one reason or another constantly since the end of March. Ugh! This is Not Fair and also has meant there have been no new ATMac posts for ages. Grrrrr. Stupid world, gimme a break!


• AniCat was sick yesterday and scared the daylights out of me - lethargic, not interested in eating, etc. - but is fine and bouncy today and eating and eliminating normally. Thank heavens! I always get so scared when he's not healthy because doing without him is a terrifying idea.


• Doing quite well without Flatmate - not too lonely or down, I don't think. It's more scary on days like today when my carer roster is disturbed because somebody's sick and it's difficult to find a replacement, but I'm doing OK. Also being so sick the quietness is mostly welcome! On the other hand, much looking forward to new flatmate too! I think I'll have to name her Flatmate2 for journalling purposes so she doesn't get confused with Flatmate!

That's all. Zonked. Fall over now.
Ricky

Comments

[From: acelightning]

enormous *hugs* for my favo(u)rite penguin, and skritches for AniCat. (cats, like people, can have "off" days because they ate something that didn't agree with them, or they got too warm/too cold, or for no discernable reason at all. of course, it's only a problem if it doesn't get better.)

i have no idea what any of the spinal stuff means, but have you ever been treated by a chiropractor? while the idea that adjusting one's spine can cure everything from toenail fungus to gum disease is sheer quackery, adjusting one's spine may be a good idea if one's spine seems to need adjusting...

*morehugs*

[From: rb]

Wouldn't let a chiropractor near me with a barge pole but have a trained osteopath (Aussie version - different to USA one) at my beck and call. But problem is not that spine is out of alignmnt, problem is discs are wacky ... I'm thinking it's related to all the hypermobility stuff.

Will see, anyway.

Cheers,
r

[From: acelightning]

if you feel better in general, not just your back, after the osteopath has her/his way with you, that would be worth mentioning to other doctors. the discs might very well be related to the hypermobility... but discs pressing on various nerves in your spine could be causing at least some of your other problems.

*hugs*

[From: rb]

Nah, the adjustments just help the muscles and joints in the adjusted area and just near it. Never had any unexpected results like that :/

I'm certainly going to discuss the report with massage goddess and the osteopath boy though.

*hugs*

[From: acelightning]

basically, i'm in favor of anything that makes you feel good, or at least better - whether it's osteopathy, drugs, music, hugs, massage, or AniCat's purring warmth against you!

(and i love the pipe-valve userpic!)

[From: kejlina.livejournal.com]

I'm glad to hear you don't have mitochondrial disease.

I couldn't make heads of tails of the pdf with the spinal information (sorry!) but isn't scoliosis also a symptom of the Ehlers-Danlos Syndrome? Hopefully the appointment with the spine doctor will make it clear as to what's going on with your back!

I hope your virus clears up soon.

[From: rb]

I haven't heard of scoliosis going with EDS, or bulging disks, but it makes sense that it might. I'm going to look into that hopefully before I see spine Dr so I can take info with me.

r

they usually say...do you want the bad news first or the good!

[From: cedar51.livejournal.com]

at least you have the knowledge it's not mitoc...al disease. Now the medics can look into your spinal problems and see what is what with that...I have no qualifications on reading tests :-)

just remembered I didn't have the dragon on for that little bit above! I turned it off when I am not dictating, as it picks up and does all sorts of strange things When I'm muttering at the screen.