Hello everyone, sorry not been around | Arthritis Information

 

not been too well this last week or so, so apologies as I've not been on to say "hi".

I had to cancel my trip to Washington as my doc said I was not well enough to travel. MAJOR flare of everything.

Will catch up tomorrow night as today my "baby" was 12 and had family visiting and trying to catch up with 3 weeks' chores.

Hoping you are all well

Love Judi

Hi Judy,
I saw the MS???? I've been questioned as well but I do have Sjogrens Syndrome which can imitate it down to a t as they say.
Best Wishes.

Hi Kewanee

I've been through query Lupus, Hughes, Sjogrens (have 10mm Schirmer's), vasculitis (areas seen in CT scan), even have "spotty" brain on MRI. Positive rheumatoid factor, CRP of 17 (last test) ESR hovering about 27-29, positive reaction to prednisolone last Oct which "cured" my PMR symptoms for about 2 weeks before they all came back when my GP reduced my dose. Being investigated for optic neuritis or is it GCA? Might know when see the optho on 20th Feb. Due to see rheumy on 6th March.

Been in limboland for so long I'm a permanent resident. Doing my best to keep the pharmaceutical companies in profit (ha!).

Sorry, feeling very crabby tonight as in a lot of pain. I haven't been able to walk very well for nearly a week as my ankle is sooooo painful. Never had pain like it (sorry I lie - the muscle spasms I have run close to this pain). Codeine is not suiting my bowels either.

Hope you are having a better day.

Love Judi xx

Judy,
I'm so sorry. No to Codiene and yes to Vicoden here. Did it for me.

You may have more than one thing going on and that would make it difficult.

My DIL in secondary MS now and I know how this gets.

MCTD may be there along with PMR and GCA. Why not?

I know the specialist in Sjogrens told me that once you have that disease you are entitled to as many more as you can think of.

May you get the help you need. Can you put a distress call out to your Doctor and get in sooner?

Have you tried Vicoden?

Hope you get some help and relief sooon.
Best Wishes.

oh Judi, sorry to hear you are in so much pain, saying prayers for you.  Sad when u don't have a name for your illness and the drs. are at a loss...I'm back to my GP to-morrow a.m. the tylenol arthritic isn't working in my neck and she said if that doesn't work it'll be a stronger pain pill....God know what now.

 

again my prayers to you and all the others who suffer with this pain and discomfort. 

 

rose

Judi,
What's new? They need to go up on your Pred. until it goes away maybe.
Hope all is ok.

Judi, I'm so sorry.  I'm saying prayers for you, sweetheart..It doesn't seem as if anyone on earth is helping you much. Keep in touch. Love

Kewanee, Rose

Thank you for your thoughts and prayers. Rang my doc this morning as my eye pain was bad and he's increased the prednisolone back up to 15mg. (Hooray). I've been surviving on 30mg dihydrocodeine/500mg paracetamol as and when (poor liver). As to Vicodin, we don''t have this as a rule in the UK. Dihydrocodeine is given in preference. Opiates are very frowned upon here, though some years ago I was popping some opiate painkillers (I can't remember which) when I had ovarian cysts and they really sent my head spacey.

I agree with you about autoimmune diseases. It seems that if you have one you may be more likely to have more. My best friend (of 36 years' standing) has polycystic ovary disease, ME and diabetes. She also has multi allergies and asthma. Her sister has MS and their mother is a breast cancer survivor. (Their mum and I had lumps "together" in 1988: mine was benign, hers was malignant.) So much going on there!

Sorry for rabbitting on - I must be feeling better!

Hope you both are having a better day today. Thanks once again for your messages.

Night night

Judi xx 

Hi Betsy

Missed your post while I was typing my "epic". Thanks for your prayers. I'm sure that it is only faith that is keeping me going. Just need to hang on a while longer before I get some answers.

Hope you are going ok today. Will "talk" later as now I have to get ready for work (0750).

Love Judi xx

Judy,

My heart goes out to you. You have been having such a bad time if things. If they think you have GCA, why don't they get you in right away to check? I thought for GCA they put patients on really high doses of prednisone to combat the inflammation (but you probably don't want to hear that either). I wish they could come up with something that would help everyone without all the bad side effects. Don't know if it's the same for you, but the things that seemed to help me the most had the worst side effects, so I couldn't take them. But then, each med affects peopel differently it seems. I'm praying for you, too, and really hope you get some definitive answers REALLY SOON!

Take care.

Reni
Reni,
I'm going to start another thread something up this line.

My Doctor's office just called me yesterday saying no biopsy as I've been on prednisone, I guess.

Why didn't they do it right away as I complained when diagnosed with PMR of alot of head pain and eye twitching stuff.

Said if I go blind in one eye again they'll do it. LOL here.
Kewanee
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