Pocket duties please - First Rheumy Appt

Toots

Boomer13 wrote:

Thank you for asking Toots. I will rest after today.... :santa: Santa is limping today.

That's a very long time for OH to be away. This must be very difficult?

Extra ((())) coming your way!

Very happy to hear you're resting NOW ;-) Poor Santa needs a break, ya know?!

I was supposed to head out to Alberta in July/August but had been waiting until my sore knee sorted itself out .... yeah, didn't go according to plan! We agreed between us that it would be easier for him to continue working out there as after being made redundant I couldn't get a full time job and someone has to pay the bills, right? We've been doing this (with a couple of years exception) for the last 10 years, so we're used to it, but had decided enough was enough, which was why we decided I'd move out there in a year or so. I hope we can figure out what's going on with me before then and will have to consider medical cost implications too, since at the moment everything I get is free. Hey ho! While I'm really looking forward to him coming home, I'm a little apprehensive (not the right word really) as he hasn't seen me like this. Explaining it and living with it are two entirely different things.... but I'm still excited! ;-)

Hugs! x

Toots

stickywicket wrote:

Toots, once again you have, thoughtfully, taken the time to give a very comprehensive account of your appointment which I'm sure others will find helpful. It seems to have been a very good one. We all appreciate a bit of banter but I think I'd rather have an efficient dour man than a less efficient joker.

As for the BP - I once had an unusually high one. It was at a pre-med so they insisted on 3 'normal' ones at my GP's surgery. My surgery said 'But yours is always OK'. They did them and it was. I still don't understand the other one.

However, there is a known connection between smoking and RA. The NRAS considers every rheumatology department should reinforce the message that smoking is bad for it and says 'A number of studies have suggested that if people continue to smoke after developing RA, they are more likely to develop more severe joint disease, and RA disease outside joints such as rheumatoid nodules, and inflammation in blood vessels known as vasculitis.'

Thanks Sticky x I was hoping it might be helpful, even just to one person stressing out, as you have all be so very kind to me. Paying it forward ;-)

I had my bp checked pre-appointment yesterday and it was high but I didn't note the numbers. Second bp check after appointment was at 160 over 99. Bp check at gp's surgery a couple of hours later was 146 over 90. I did tell gp that in the last week or so I have felt like my heart was thumping sometimes, even when at rest, but she still didn't seem overly concerned. Hasn't stopped me fretting that there could be something else going on as of course heart issues can be involved with autoimmune type stuff. Trying not to stress as I know that won't help, and actively reducing my caffeine intake from today.

I know smoking is bad and particularly related with RA. I had been thinking about stopping all year and have reduced the amount. I need to bite the bullet though and stop faffing around. Thank you for the timely reminder Sticky. Hugs! x

I meant to ask the rheumy about exercise - I'm still finding it nearly impossible to wear shoes and walk properly, my ankles are rough, with tendon swelling and bursitis, so I worry about doing damage. But I need to be doing something to manage weight gain/bp/sanity.

Boomer13

Ah Toots, I really hope you can have this rheumy-stuff sorted out so you can carry on with your plans. My OH and I did long-distance living for awhile too. I know how difficult it is and I can't imagine if I'd have been getting sick then too (((())) and more (()).

Sorry you're having BP troubles. I'd almost forgotten about mine until I stopped my BP med. It was doing a good job and within one day had gone up again. It seems due to my PsA as rheum says otherwise I "have the blood of a 20 year old". I told him I'd rather have the joints/tendons of a 20 year old :xmas_cheesygrin: . I didn't miss feeling my heart pounding away all the time. Here's hoping yours will come down a bit when you get the other rheumatic troubles under control. I didn't give up caffeine; it's my last real vice :!: but tried decaffeinated coffee; it just doesn't taste the same :shock: . My mum had to give it up completely due to her heart, so I'm likely on the same path :roll: . Here I go rambling away on your thread.

Having OH home will be good for your BP? Hope so. Mine is (well, most of the time ).

Take care, ((((Toots))))!

xxAnna

Toots

Please feel free to blether Anna, I'm not protective of the thread!

Sorry to hear you suffer with bp problems although glad to know you seem to have it under control. I'm going to decrease caffeine intake for the next couple of weeks and see if that helps any. I do LOVE my coffee (I have tins of Timmy's in my cupboard ;-) ) so it's a pain, but you gotta do what you gotta do, right? Hoping you don't have to give yours up

I miss OH when he's away, but yes, it has been particularly difficult over the last 6 months. But I'll enjoy having him home all the more for the short time and yes, hopefully it'll help my bp!! ;-) Funny, my Mum posted a sticker thing to my facebook the other week, about how cuddling apparently boosts the immune system, so my OH better get home quick. I had to point out to her that I really don't want my immune system boosted, it's in overdrive already thank you very much!

I appreciate the cyber hugs, thank you Anna. Huge hugs right back and kitty to kitty miaows x

Toots

I'm just going to update here since I don't want to take over the Sulf thread where I posted asking about how long it takes sulf to come out of the system.

Have had a very interesting and likely illuminating afternoon :roll:

As I mentioned in another post, feeling horrid since stopping the Sulf last week, now full of the cold and was concerned it was in my chest. Long story short, I asked GP to check it out today while I was there. She said there was certainly a 'squeak' which under normal circumstances wouldn't have worried too much over. However she said I will still be very much immune-compromised from the Sulf and that it would take some time yet before my immune system is back to 'normal'. So she's given me antibiotics to 'kick this in the **** before it causes trouble' (quote!). Too busy blethering to the very attentive and enquiring student to think to ask her how long 'some time yet' would be.

I think I may have mentioned somewhere along the way that I'd had a couple of spots, more like teeny tiny blisters under the skin, on the palms of my hands a while back. They went away and I forgot about them. Anyhow, this morning another had appeared in the middle of my hand so while I was there I asked about it. Turns out it just little old eczema. I mentioned to her that I wouldn't know psoriasis if it hit me in the face, so I felt it worth asking about these sorts of things. Anyhow, both student and I were educated ;-)

Mum called me to see how I got on at the docs. The conversation went something like this (with some poetic licence):

Me: yeah, turns out it's eczema, just like you get.

Mum: I don't have eczema, what made you think I have eczema?

Me: what do you mean you don't have eczema? I thought that was what you had flare up sometimes on your wrist and your scalp?

Mum: goodness no, that's not eczema, that's psoriasis.

Me: what do you mean it's psoriasis? what the hell are you talking about?

Mum: I'm speaking English aren't I, Toots?

Me: one of the questions I keep getting asked, does anyone in the family have psoriasis and I keep saying no!

Mum: What? Oh you nutcase!

Me: Well nobody told ME!

Mum: I am positive I have told you it was psoriasis.

Me: *sigh* I think there's a high probability I know which particular arthritis I may have ....

While I know nothing is a given, this would make so much sense. Huge issues with my tendons particularly, which I know is common with PsA etc etc etc.

Question is - should I contact rheumy dpt and let then know, or just let them run their tests and wait for MRI scan and mention it next time I see him?

Boomer13

I'd let them know, Toots. Maybe they will want to biopsy (though maybe not if it's on your palm). Mine are blister-like and were confirmed psoriasis by biopsy. Sounds like a big clue....

Your mum sounds like mine Ah, you have to love family!

Hope you are feeling better soon.
:noel: xxAnna

Toots

Thank you for your sound advice and good wishes Anna :xmas_cheesygrin:

How are you doing this week? It is brighter for you? I certainly hope so. Hugs! x

stickywicket

Toots wrote:

Question is - should I contact rheumy dpt and let then know, or just let them run their tests and wait for MRI scan and mention it next time I see him?

I'm sorry about the cold, Toots, and hope it clears up quickly.

As for the above, I know I fall into the aged cynic category :xmas_mrgreen: but I'd personally just leave it until the next visit. It's unlikely to make any difference to your treatment and, in any case, your mother having psoriasis doesn't mean that you have PsA. My mother had psoriasis so they kept trying to make mine PsA but couldn't. I still have Stills Disease, a juvenile form of RA.

Love2Draw

Hi Toots, and everyone else, I'm so glad that I wandered into this forum tonight and found your thread.
I have my first Rheumy appointment on 6th January, so found your in depth description of what happens very helpful.
My appointment is at the WG too ! *Waves from near Dalkeith* :noel: :xmas_cheesygrin:
I already have OA of my spine and both SI joints, and degenerative disc disease. I had surgery on my spine at the WG back in 2008 (microdiscectomy), have had an MRI scan (lumbar spine) there in January this year and have had my feet x-rayed there in July this year. I've found the staff there all to be lovely.
After developing pain and swelling in my feet, and joint pain in the knuckles on both hands earlier this year, my GP did some blood tests (1 lot in January and another lot in July). Both sets of bloods revealed high inflammation, although I can't remember what else my doc said. Foot x-rays showed some degenerative changes in my feet.
My GP told me back in July that she would refer me to a Rheumatologist. She did say that its quite a long wait, and I got my thick, hospital letter (same as yours) just a few days ago.

Toots

So very happy that this thread is of some use to you! Fingers crossed you get your appointment sooner rather than later - I did wait the full 12 weeks though so you may need a little patience!

Hugs! x

Megrose489

Hi Toots,

Just catching up with threads and noticed your comment about not asking to be copied in on letters from the hospital to your GP. I went to hospital a few weeks ago (just been diagnosed with laryngeal reflux) and forgot to ask about this too, but I phoned the consultant's secretary the following day and she was able to amend my records. I received a copy of the letter a few days later, which was quite fortuitous as I needed to arrange for a repeat prescription through my GP - the medication was discussed in the letter - and, for some reason, the letter to my GP hadn't yet arrived. I was able to take my copy to the surgery where they photocopied it and the prescription was organised. So, just thought it might be worth giving your consultant's secretary a ring.

Take care.

Toots

Thank you so much for that tip, I'll give them a call! x

Love2Draw

Well, my first rheumy appt yesterday was EXACTLY as you described it Toots 8)
I had my height, weight and BP checked by a nurse. Gave her the urine sample I had taken with me, then went back out to wait to see the rheumy Dr.
Didn't have too long to wait, but he was very thorough, exactly as you described.
He seemed to believe that I have "wear and tear" arthritis though,(Why DO Doctors say that ? "JUST wear & tear arthritis" - The "just wear & tear" arthritis I have in my spine and both SI joints cripples me with pain 24/7 ),but said he couldn't say for definite until after test results came back.

He briefly mentioned going to a Pain Management thing, but I'm not confident about that because the one my GP referred me to last year wasn't that helpful. It was run by a physio, the "course" was to last 6 weeks, each session was 2 HOURS long - resulting in me suffering in excruciating pain for 2 weeks after the first session.
The timing of the sessions didn't fit in with the bus I had to use to get there and back - 10am start meaning I had to get the ONLY bus before then to get there...at 9am, meaning I had to hang around outside for 45 mins before the session started. Not quite so bad for the journey home though - I "only" had a 40 min wait for the next (once hourly) bus home.
I personally felt that the physio who held these pain management sessions was a bit patronising towards us. It was as if we were children in a primary school class. I didn't go back after that first session.

Anyway, back to the rheumy. The Dr told me that he wanted x-rays of my hands and my lower back, and that he wanted an MRI scan of my feet....appointment will be sent in the post.
So, after seeing another nurse to have blood samples taken (4 tubes), I was taken over to have my hands and lower back x-rayed.
Then, the patient ambulance service staff were there, waiting to take me back home.
Now sitting waiting, twiddling thumbs, until I hear back re my bloods and x-rays.

Toots - re your MRI. When my GP referred me to the WG for a MRI scan last January, I received a phone call about my appointment rather than a letter. Had the phone call on the Friday morning and my MRI on the Monday evening at 7.30pm. My GP had the results back about a week later.

hileena111

Hi
Glad you have got the first hurdle over with.
I go to a chronic pain management group. It's on once a month. Like you say its for about 2 hours.
Arthritis courses last 6 weeks or 2 weeks depending on which you go on but this was completely different.
This one goes on and on and you can go or skip weeks and go back again. Some people have been going 5 years. I find its good.
It starts at 10.30am but we start meeting for coffee at about 10 just to chat.
Because Phil {who runs it} doesn't have to stick to 6 weeks it changes from meeting to meeting. He will come in with an idea what he is going to talk about but over-hears a couple of us talking and asking advice {a bit like the forums} and he'll say would you rather I delved in to that topic today? Then he checks with the rest of us if that's OK? and of he goes on a tangent
I would go with an open mind and the thing is.......if the first one is as bad as your feared you don't have to go back but I think its worth a try. I find mine invaluable. {from the social aspect as much as anything else} If you were a bit down when you went in you certainly come out a different person.
I have OA in my hips, lower spine, one ankle and neck Oh yes and also Kypho scoliosis and am due a THR in 2 weeks time. .

Love
Hileena

Toots

So glad to hear that your appointment went as expected I hope that the results etc are all in soon for you so that you know what you're up against, do keep us updated won't you?

Interesting to hear you had a call re the MRI scan, I'm almost certain rheumy said I'd get a letter but I still haven't called them like I said I would, so I can always check. Thanks for that! x

dreamdaisy

Bumped up for tam1272. DD

tam1272

thankyou so much. this thread was a great help. just hope im not waiting too long for an appointment.
tam x

dreamdaisy

I'm pleased it helped - good luck and let us know how you get on, OK? DD

tam1272

i most definatley will. so glad i joined here
tam x

Boomer13

Bumping this up as requested.

Boomer13

Bumping this up for Wendy

Boomer13

re-bumping.....

Wendywells

Thanks for bumping this, great reading will be very useful x

stickywicket

Bumped up for nemmy2007.

DebbieT

Mods, this is such a massively useful post ... Couldnt it be made a sticky? I do think it would be so worth while. It's been bumped loads of times!!

Thanks for the consideration.

Xxx xxX