My 2nd appointment with my new Rheumo - Not good news :(

General
1

"My New Rheumo told me the complete truth sad emoticon"

Well i saw the Rheumo today for over an hour..such a lovely man and he's got loads of time for questions which we all need. He asked how i'd been... told him about my flares with this cold lingering...he saw my neck all sore besides the blisters on the ears and checked my fingers as my Raynauds was showing bad.

He asked how the 400mg of plaquenil was helping...i told him it helps my skin and spasms sometimes...then out the blue he said, i'm cutting you back to 200mg daily as it's affecting your eyes (So notes & letters must have been studied) besides the letter from the eye specialist as he asked me how my eyes was doing and i told him the liquids besides gel was'nt helping and he said your eyes need plugging when you see the specialist again.

I asked if i had polymyositis and the answer was NO and the same for vasculitis.

I then asked about my x-rays for my feet and hands...he said my hands are ok except for when they swell but i do suffer from "bursitis" caused by my Osteoarthritis, that's why my toes & ankles are cracking.

http://www.bupa.co.uk/individuals/health-information/directory/b/bu...

http://www.foot-pain-explained.com/bursitis.html

Then i told him i was going to go for the Rituxan IV Infusions and i was told to forget it, the infusions will cause more damage (so that's another checkup down) i asked about methotrexate and he told me no because of my organs and furthur damage.

I then furthur asked about my legs with the severe pain, he said you had DVT badly and what it's causing is lack of blood flow which will continue because of the broken blood vessels and having the muscle Atrophy makes it worse and he's recommended the stretch stockings you use for DVT.

I asked him out straight how bad am i out of 10... he said out of 10 with your sjogren's syndrome is 5-6 out of 10 and that's not including your lupus and other issues and told me there was nothing to help me in the field of meds and that everything would get worse plus the sjogren's was a large complication.

I was down hearted when i got home just wanting relief from flares and pain but i also know that meds can only do so much for we and my body is past that but my Rheumo's honesty was respected in a large way and he wants to see me in 6mths...to check how i'm keeping.

You know my saying family of LWF (LIFE GOES ON)

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Oh, Tez, I'm so sorry the news wasn't good. Especially that there's nothing that can help you medically, and that things'll get worse. I can't think of a more frustrating visit. But you're right, it's best to hear the truth about your condition and your options. Although I'm not sure if I would have wanted to hear your news.

I'm sorry you've got all of those ailments too. Did your rheumie have any suggestions for making life more bearable/comfortable? Ah, heck, you'll probably find more hints on these sites.

I don't know what you did when you got home to mentally unwind from that doozie of a visit but I hope it was something good - although God knows, even that's limited for us these days, grrrrrr.

Hugs,

Petunia

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Hello Petunia,

I was'nt pleased at first down hearted actually and when i spoke with my hubby ste when i got back..i told him all i want is relief from some pain and he said you've coped this long just keep living for today and he's right...i love him and my home and the extra bonus is the sites and helping best possible.

Actually i was pleased with how honest he was with me...my old rheumo kept playing around the fact and ignoring me meds through my organs and that why it come to words in the end...he's a lovely bloke who's very considerate but straight at the same time.

Well he's said the plaquenil will never help my joints but was just pleased it was holding off more skin issues and to help me otherwise is the 4000mg of paracetamol daily.

since i've been home and settled down i've been swapping from LWL, LWF and the sjogren's site besides...i tried to read but my mind was'nt with it as i find that relaxing in the evening.

Thank you so much for your loving concern and your such a lovely friend:)

Finally my minds at rest with alot of issues and how i stand and i've been waiting 5yrs for proper answers.

((Hugs Terri)) xxx

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Hi Terri, wow that was some visit, you had my attention … I’m so glad you can look at this with such a positive attitude, you are such an inspiration to others ! Take what your given and move on … That’s such a great way to deal. And you are so blessed to have such a wonderful husband, his attitude is wonderful as well. Im just curious you mentioned wanting pain relief… Have you seen a pain management dr. ? Something to think about. Thank you for keeping us updated
Hugs & blessings

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i am so sorry that u had all that dumped on u at once. thats alot to handle. if your dr doesnt think meds will help how anout massage or water therapy. or even some natural supplements. i hope u can find so realief. best of luck.

hugs

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Hello dee,

Lovely to hear from you my friend.

Well i mays well look at it in that way and carry on, i've been through alot in the past and still got issues but have pushed them aside so what difference is the Lupus, chatting with ste helped me alot and he's a person who believes in you living for today...what ever happened yesterday as gone and never plan tomorrow and he read a few members profiles on LWL, only last week when i woke he said while you was sleeping i've been lookingup about your legs.. i did laugh he said it was the blood vessels like the Rheumo besides lack of oxygen and his comment was it's those fags you keep smoking....dee those fags mate help me through. LOL

We don't get offered pain management here in the UK you take what the specialist's offer and in the meantime you either see your GP or speak with the sister's in the rheumo department...i'll keep popping the paracetamol and i know how much to go up daily because if i hit 3000mg they make me stoned like i'm gone.

http://www.sweetcomments.net/images/hugs-kisses/polka-dot-hugs-and-kisses.gifTerri xxx

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Hello Eeyoreluver,

Oh bless you mate for your comment and concern...actually i'm glad it came out, my old rheumo kept messing about and not being straight and my derom was that concerned he passed me onto this new rheumo as he was really worried about my SLE and he's told me the situation straight out, not pussy footing around like the otherone where we kept having words.

I used to have massges years ago and that was stopped through my seizures and falling off the bed and now they do it at my doctor's £25 an hour...natural supplements i don't mess with as years back i went for herb stuff to help me before knowing about Lupus on other issues i still have and i was refused through counter reaction with my meds...thank you for the suggestions.

I'm going t keep on with the plaquenil as he's suggested and take the paracetamol...it's all mainly to keeping

"Mentally strong" because getting my eyes sorting as they're so sore.

Hugs & kisses your way Terri :)

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I'm so sorry for your pain. Have you tried medical marijuana? I take synthetic marijuana (Nabilone) with T3,s, really helped my recent flare. We sound like we have all the same things, except I have PVD instead of DVT. BE better soon :)

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Hum, Terri, that was some visit that you had with your doctor! His brutal truth must have set you back on your heels. But when you get over the initial shock, it's better than just writing some more prescriptions. Also with research going on all the time who knows when there might be some breakthrough and some help for your condition. Your doctor's remarks would be "at this time" there is nothing more to offer you. I also believe that your doctor must know you well enough to know that you are strong enough to accept his words without completely giving up. It must be difficult for doctors to treat so many different kinds of people and to discern which ones can accept the uncomfortable truth.

We care. We are here for you. We love you. You have helped other members with your postings and your sense of humor. We are so glad to have you in our family journeying the same road with chronic illnesses.

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Hello charlie,

No need to be sorry that's life sometimes it goes our way and other times not....the main thing is trying your hardest to carry on and get by.

Well i'm pleased the Nabilone is helping you but my rheumo said there was nothing to help me and my GP won't prescribe anything he leaves it to the specialist..he di say he would treat me if a letter was ever sent to him but otherwise it's the specialist.

You having PVD alone is also a danger illness and i hope your on some blood thinner for this...they've got me on baby asprin 75mg daily so it does'nt upset my stomach as i'm highly dosed on other meds for seizures etc, my GP gets worried about the amount going in my system as i'm taking a right cocktail. LOL

Takecare in yourself Love Terri :) xxx

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Hello Rachel,

It was some visit i had but from the first time i saw him i told him i like the truth and i've always stated this to doctor's because going for 28yrs this january with one thing after another i just like to know what i'm facing plus i like and admire honesty in a person...it did knock me back when he said there was nothing to help me but like i stated speaking to my hubby and him also saying you've gone this long struggling you can carry on, as he's supports me when i go paralized, when i met him i was having over 18seizures daily, so he's seen me through alot and also knows my determination to fight,at one stage in my life my seizures was mentally taking me over till one day out the blue i thought i can't keep living like this, so now i won't let nothing take me over, yes i have my down days through my depression but once it leaves me i carry on....sorry if it's long i do apologize.

Rachel he's one lovely specialist and before i left he took my hands and told me to takecare of myself and he'd see me in 6mths to see how i was going...my other rheumo could'nt wait to get me out the door after 10mins but he does an hours session with you.

I know your here for me and members on LWF are so loving and caring plus you have a few from LWL on here also...i just think it's lovely when you chat with people in the sme circumstances and not get judged instead understand.

Rachel takecare yourself and thank you for listening :) xxx