WELL ALL THIS IS LAST NIGHT MEETING WITH RUMI MAN AND DID HE KNOW HIS STUFF

[minka]

i wish i could put on there the sketch he did for me.

HE listened to all what i had to say and i was verry calm for onece the wife said

i asked if i sounded to much like i was a hypo condriac HE SAID KNOW.

HE SAID THANKS FOR BRINGING YOUR BLOOD ALONG AND THAT YOU GOT CHECKED OUT WITH A NEURO FOR MS.

can i look at your hands

bet you have also had pains on the top of your spin near your bum havent you i said how you know that he said cos you SI joint will be inflamed also. (how the hel did he know that I DIDNT MENTION IT)

hE THEN STARTED SKETCHING THINGS ON A PAPER IN THE 3 CIRCLES HE DREW rumi.lupus diseses ans spondyloarthpathy enthsihs.

RIGHT JOHN I KNOW YOUR GRAN HAD YOU SAY RUMI WELL IF YOU HAD THAT YOU WOULD NOT HAVE SWELLING IN THAT AREA OF YOUR FINGER OR THAT NODUAL IT WOULD BE SYMETRICAL AND RETAIN ITSELF TO THAT AREAS SYMETRICALY.

NOW LETS LOOK AT LUPUS WELL IM SURE YOU DONT HAVE THAT

SO THEN WE HAVE ONE CIRCLE LEFT SPONDYLOARTHPATHY.

now you have had this for the 3 rd time first two time how long to clear it well i said took 9 months to start feeling somthing like and the second time well a bit more.

so he then drew 3 gaphs one age rang 20 to 100 years old

HE SAID FIRST TIME YOU GO UP ON THE GRAPH THE IMUNE SYSTEM STARTS TO SORT ITSELF AND YOU COME DOWN 2ND TIME YOU GO UP ON THE GRAPH HIT THE TOP START TO COME DOWN USUALLY THIS IS A BIT LONGER but maybe you where used to what was happening a bit.

AS YOU GET OLDER THE STEEP GRAPH GETS LARGER USUALLY TAKES MAYBE 1 1/2 YEARS AS WE GET OLDER.

NOW IF YOU HAD NOT COME HERE TODAY IN IM NOT SAYING THIS WOULD HAVE HAPPENED I DONT KNOW BUT IT MAY HAVE TOOK YOU 2 YEARS TO FEEL A BIT BETTER COMMING DOWN ON THE GRAPH.

Somthing in your system started this like stomac or somthing else and your imune system response was to kill the invader. unfortunatly your system sometimes carries on killing it dosnt attack the joints thats why mri and xray showed same joint thicknes of cartlidge.

what it does do is attacks the ligament areas of those joints which in turn can affect the carlidges cos they are not opperating right at the ligaments area.

The main pain was infront of the knee cap more so than under at first i said yes thats because of the fluid build up you where having that pain.

RIGHT GIVE ME YOU HAND presses on nuckle count 1234 white gone back to red normal blood flow.

PRESSES on 1st joint on little finger which contains more ligaments to bend 1 wowe back to red again see thats inflamation in that erea.

so john we have 2 options here to take

WE CAN ADMINISTER A GENOLOUGE INJECTION TO TRY OTHERWISE WE GO TO THESE I THINK HE SAID SULPUR LIKE TABLET.

I SAID WHAT WOULD YOU DO HE SAID I WOULD GO FOR THE INJECTION IN YOUR BUM FIRST AND LETS SEE WHAT HAPPENS.

THEN I WILL WRITE TO YOU AND YOUR DOCTOR and i also whant you to email me direct on what happens in the next weeks or so the web address of me at hospital will be on the letter. YOU WILL FEEL HOT FOR THE NEXT 3 DAYS OR SO.

jAB IN BUM. FELT LIKE I HAD A BOIL ON IT GOING HOME IN THE CAR.

so its watch this space in the next couple of days cos i feel a bit wierd this morning.

SO HOW COME THE RUMI AT HOSPITAL DIDNT EXPLAIN THIS TO ME AND WHO IS RIGHT WE WILL HAVE TO SEE.

hope i wrote this in a way that you all understand.

what are your views?

think this cost me with injection about 270 quid

[Hidden]

Hello there,

so, £270 well-spent, by the sounds of it!

The thing I am meant to have - Psoriatic Arthritis is a Spondyloarthpathy though of a slightly different kind to yours, I think. Though my Rheumy thinks the exact diagnosis does not matter, I disagree and the fact that your Rheumy outlined the difference between RA and Spondyloarthpathy suggests that the differences are important. I'm really interested in what he said about your disease attacking ligaments which in turn affects cartilage. Maybe that's a clue as to why I've never been able to strengthen my quads even when exercising them on a daily basis.

I've had 'episodes' too, all involving my knee - the first time when I was 14 years old then again in January 2011 and each time a complete recovery but this time no such luck.

You must be feeling high as a kite to have got some answers! I hope the Rheumy turns out to have been spot on with the meds - that would be brilliant, wouldn't it?

Hope you start to feel much better soon,

Christina

[minka]

hi chritina

This guy seemed to know more about my body than i did and that was something i thought i was going to sound like a nutter but kept me carm and told him how it was with me twice before aspect cleared but left some problems i could deal with dont feel hot today like he said but a bit on the cold side realy but that might be the thing he gave me knee joints feel a bit more wattery today but that might be my immune system wondering what the hel is going on and what should it do next. (funny thing the human body isnt it)

if you send me your email to [e-mail] i will send you the sketch he gave me in particular the 1st knuckle joint on the finger red raw no not in rumatoid like that cos its more ligament than cartlidge sos it bends different to the next joint up.

the wattery substance is the rubbish that seems to do the damage if i was hearing corectly thats the stuff that seems to bugger up the tendons. so if ya ligaments get damaged next on the ajenda is the joint is not working correctly (which makes sence even to a nuclear engineer ie no oil on bearing surface surface wears prity fast how long do you think you car would run if you take the oil out abot 3 min before the big ends and little ends siese up)

and what then happens to the rest of the engine when these go probably the gears would strip of with the seisure HOPE THIS MAKES SENCE.

now i think he said if this dosnt work i will have to go on somthing called im sure he said sulfalazie well it was sulfa something or another now ive had a look at this see what you make of it re - nock on effect or does anyone take this on here.

All this makes me think is their people who get mis diagnosed between the inflamotory diseses of the body

or are ya lucky to hit someone who seems to know his stuff like i said had it before then left after 9 months started to clear up what hard times they where pussing like mad i remember them well it was like shear hell then just ended up with clunks in me knees but i could walk for miles and ligaments got stronger with the exersise but this last time was more joints affected

god my typing is better and faster today than its ever been. even though im a bed speller

no spell checker on here.

now i know kenalogue is also given for hay fever so im a bit of a none beliver at this moment in time the prof is in the pudding

regards john

[Hidden]

I think that all sounds great for you John - you paid your money and were listened to and spoken to properly with good explanations for everything. Well done you for going ahead with this second opinion - as Christina says it sounds like money well spent. He will write it all down in a letter to your GP so they should be able to make sense of it for you as well which is good if you forget or can't understand stuff he said in retrospect.

I had a kenalog jab last year when I was waiting for my first rheumy apt and it worked really well - it may be for hayfever (which can also be really miserable don't forget!) but it's a powerful steroid too so you should rest for the first 24 hours after it. If it does work it makes it more likely that what you have is inflammatory so he is more likely to put you on the Sulphasalazine then I think. If it was just osteoarthritis then it wouldn't make any difference to the pain or inflammation so it's a way of eliminating other stuff too so the way you respond to it is quite important.

I don't think there's much between all these types of inflammatory arthrits - I think many overlap and if you are put on Sulpha then you must have inflammatory arthritis because it's a disease modifying drug in same family as Methotrexate but a wee bit less powerful. So that means RA to some rheumies where other will call it a connective tissue disease or just inflammatory arthritis. My rheumy said the reality is that RA is probably an umbrella name for several different arthritic diseases. I read recently about borderline rheumatic conditions and I feel quite similar to them really. It was my tender and swollen knuckles that made my rheumy diagnose me with RA although most of the pain was actually in my wrists which weren't even swollen! Tilda x

[minka in reply to Hidden]

HI TILDA YEP know this it used for hay fever so im hoping i get something out of it EVEN THOUGH I AM A DOUBTING THOMAS but ive been so long since april i vagley remember how my body used to feel if ya know what i mean.

on the stuff he drew for me he reaaly was adamant regards the 3 types of ilness

one lupus range immune two rumi range imune three spondy types he did not let the 3 overlap at all on this point which seemed inportant to him on diagnosis.

aND THE WAY HE WHENT ROUND HOW LONG WAS IT BEFORE IT GOT BETTER THE FIRST TIME IN 1991 AND HOW LONG DID IT TAKE 2ND TIME 2005 hE SAID IF I HAD NOT HAVE COME TODAY IT COULD HAVE TAKEN ME 2 YEARS THIS TIME WITH MY AGE OR A LOT LONGER.

bUT LIKE I SAID TILDA IM THE WORLDS DOUBTING THOMMAS WHEN IT COMES TO DOCTORS i would not pay some of them with holes out of washers the way they treat you is lik watching remember BREAD on telly when they go into the dole office NEXT.

but then their are some good ones out their who are willing to explain what is going on with your body and try to make some sence for you to ubderstand it. THATS ALL I WANTED TO KNOW. and i could not belive he was telling me other areas of pain i had without me telling him OR as doubting thomas would say was it a good guess!!

regards john

[minka in reply to minka]

o forgot to say RUMI DOSNT GET BETTER SOME OF THE OTHER TYPES IN THE SPONDY CAN (BUT THEY CAN COME AND GO AGAIN IN YEARS TO COME ie 5 years 12 years etc but each time with age the graph gets taller before you come back to normality albiet with some left over problems

[Hidden in reply to minka]

Hi again John - thanks for explaining. Mine really doesn't seem to think it matters too much what you call it - he just calls it arthritis mostly - it's how you treat it that matters.

I'm with you and Christina - I like more definition so it's interesting learning what your rheumy told you. Will you be going to him again or does he have an NHS list you can join I wonder? When I was struggling with the NHS getting to see my rheumy because of backlogs and waiting times I almost went private and was advised that if I did I should find someone who works private and NHS for the reason that they tend to be more ahead of their game because they aren't just doing it for extra money (and let's face it they all get paid a lot - by my standards anyway!).

Yes I too am a doubting Thomas where it comes to the medical profession but I decided that my rheumy was really good at my last consultation. He listens and is thorough and gives quite lengthy explanations but is just too busy to give me any contact details so if I want to ask him something I have to go through my GP which is a bit annoying because my GP is usually booked up. There is a physio here who attends my consultations and if I email her she passes them on but she's away for a month just now - just as my knuckles and fingers are starting to swell up and I could do with some advice about whether to increase my meds again or not! TTx

[minka in reply to Hidden]

hi tilda

just had a look at what this is used for:-

Rheumatic disorders: As adjunctive therapy for short-term administration (to tide the

patient over an acute episode or exacerbation) in acute gouty arthritis; acute rheumatic

carditis; ankylosing spondylitis; psoriatic arthritis; rheumatoid arthritis, including

juvenile rheumatoid arthritis (selected cases may require low-dose maintenance therapy).

For the treatment of dermatomyositis, polymyositis, and systemic lupus erythematosus.

well i belive he works out of bury hospital and rochdale hospital

dont think i will be seeing him again WELL I HOPE NOT!! that would be great but he may put it in his letter to the doctor if no improvment on nhs next time anyway i would certainly travel to bury.

i belive this injection kicks in about 24 to 48 so bet you im 48hrs then it lasts for several weeks on the site ive been and downloaded the pdf. i must say he was abit adamant on the 3 circle's he drew with my complaint and lupus and rumi not in the same classes acording to him.

and i was taken aback a bit when he asked about pain on top of be bum the SI joint without mentioning it and to the way he described and drew fingers and ligament areas.

now i dont know what dose i had but if its like our martin i can only have it the once PLEASE NO SULFA STUFF PLEASE im not sure i like the use of that stuff.

but at least someone sat down and explained what was going on and was not supprised id had it before. SO i can see where some people where thinking MS cos thats the 3rd stage of that game. before it gets realy bad bad

[minka]

chritina

just reading your note again love.

when you are strengthing you quad exersises

this may be with a towel under and raising the leg their for 10 sec hold THINK in your mind about THAT quad. NOW THEN AND HERE IS THE NOW THEN WHICH SOME ONE MAY NOT HAVE TOLD YOU AND IT IS VERRY VERRY IMPORTANT TO YOU.

doing quad exersises you must take note of what i say here

doing the exersise is good BUT (you must not must not FORGET TO EXERSISE THE VMO MUSSLE now that is the one that acts with the quad to pull your PATTELA part of the knee on track through the GROVE IN YOUR KNEE CAP and the easy way to do this is turn the knee through about a 30 degree angle so your toes are facing outwards a bit look up on youtube

NOW DO THE EXERSISE HOLD FOR 10 SEC THINK ABOUT THAT MUSSLE AS YOU DO IT you will find that a mussle in the inerside of you leg comes into play not just the front of your knee quad

let me know if it does or is it wasted cos if ya pattela is not tracking its going to give ya pain cos you have no supporting vmo mussle.

next exersise.

this will hurt a bit sit in a chair and heels on floor how long can you lift and raise from your heals on floor tapping your toes to the floor as fast as you can (you will then feel the mussle at the front of the leg hurting thats because you are using it to give some support to the calf mussles dont think you have a mussle their toe tap and tell me if it hurts after a min.

I dont aim to be a phisio but i know what worked for me second time i had it maybe it will be of help to you.

regards john

[Hidden in reply to minka]

Very kind of you John.

I do do the first exercise you describe and in fact can usually keep my leg raised for much longer than 10 seconds. (I also do the ones sitting in a chair and raise my lower leg & again can hold it for ages usually, I also usually put a weight such as a heavy jacket across my lower leg to add more challenge!)

But what you say about turning knee 30 degrees is interesting, it's not exactly how my physio showed me to do it, but I'll give it a go. I don't know if this is relevant but I do have a maltracking patella on my left leg, probably on my right for all I know, which I think is caused by loose ligaments (I have hyper-mobile ligaments, as do a lot of people.)

I have strong calf muscles so should be able to do the toe tap, in fact have just tried and does not hurt after a minute, though I can feel the muscles being worked.

I'll try the exercises more carefully later on & let you know how I get on. I'll email you too, thanks again!

Incidentally, I used to work on cars many moons ago - 2CVs mainly as I was strong enough then to lift the engine myself & I'm rubbish at electrics which obviously didn't matter much! So I too sometimes think about my body as if it was a car! And I remember long sessions in the little garage I worked in with everyone putting their heads together to diagnose a problem - why don't doctors try that??? But I think the comparison works better perhaps with osteoarthritis which is about wear and tear. The inflammatory types such as the one you've been diagnosed with involve enzymes doing nasty stuff ... would go on but I don't know any more so I'll shut up!

Hope that injection gives loads of relief very soon, I bet you'll be pleased with the result.

Christina

[minka in reply to Hidden]

WHISH IT WOULD HURRY UP

SUPPOSED TO BE TAKING IT EASY SO I TOOK A CLUTCH TO BITS ON THE BIKE TOOK AGES BUT IT TAKES YA MIND OF IT A BIT GET ITCHY HANDS WITH THAT OIL THESE DAYS

[Hidden in reply to minka]

I tried the exercises - especially that bit that's new to me: turning the foot out 30 degrees and I see what you mean - many thanks for this really useful advice. (I also found a YouTube vid. showing how to do it).

Your advice has educated me a bit more on the important subject of quads. I might phone up my Physio, too, and now I'll be able to ask about the VMO which I hadn't heard of before.

Cheers!

Christina

[minka in reply to Hidden]

glad to be of assistance heather i know its important cos i didnt know before 12 months ago

cos if ya just work one mussle the other dosnt correct the pattela right some how.

did ya try the toe tapping that hurts after a bit.

today still got up aching but then it still might kick in tonight

[Hidden]

Hi John, I'm so pleased that you've had some answers at last and things are moving along for you. Is the rheumy sending a request for your sulpha to the GP to issue or do you have to wait until you return to clinic? The injection into the bum cheek works wonderfully in my experience. It gets everything settled down while the drugs have time to do their job. I had one in May and another in August and it helped no end. Well done on following your instincts. I had a misdiagnosis too and I know how frustrating and painful the wait can be. At least now you can put a name to it and come to terms with it. All the best

Paula x

[minka in reply to Hidden]

well paula

maybe if i hade done it in 1991 i would have got a jab sorted it then gone back in 2005 sorted it then gone in april this year jab sorted it maybe.

if only i had listened to our martin saying if it was me id go see that guy i saw.

felt a bit hot today but the aches where still their dryed up a bit the knees with that injection in the bum but maybe i might end up on them tablets yet cos i should have followed it up in 2005 instead of climbing the mountain again got better and said well its over put it behind you.

i didnt think it would strike again but leaving it from april to now i think was a big mistake wondering what this was.

its still an inflamitory condition so i dont know how much damage i have done pushing on like i did before then when its gone you get left with whatever you get left with if you know what i mean.

and i still think after 2 days since injection that my imune system is say get rid of this trying to settle me down and pushing the jab out the way

how did you feel after the first couple of days where you still stiff paula let me know if you can remember.

the letter that goes to the docs will have that in it if this dosnt work

he has given me his email address to inform him of how it whent with the jab and the outcome

i would give anything to get back on me bikes for a year even if it was just one year.

[helixhelix]

Great that you got your money's worth, so v pleased for you. I too find the Kenalog injections make a big difference, but try to rest a bit more than normal for next 24 hours to give it best chance of working.

And at least now you know that it's spondylyarthritis then that'll help you manage it better as well as being reassured that not as likely to get long term damage, as those of us with RA. But there are many things similar between them, I guess the three groups of diseases are a bit like cousins - same family but separate personalities. Anyway, I take Sulphasalazine and it works for me. The main side effect has been sun sensitivity, but I never liked sitting in the sun anyway so it doesn't bother me too much, (and bright orange pee).

Hope the jab works for you. Polly

[minka in reply to helixhelix]

hi thanks

any bad effects of sulpa tabs.

i know this thing has a tendancy with the water to attack the ligaments.

so i would think attack the ligament and the weak ligaments will then make the joint go see paula reply above stil;l ached this morning think my little bug is having a go at the jab myself saying im NOT HAVING THAT.