[Mrs M]

Good Afternoon All

Had Rheumy appointment today and finally I feel I may be getting somewhere? Yes at first I got all the jargon about Fibro but then I'm pleased to say I stood up for myself and put my best foot forward:lol:

I fired questions at the rheumy and explained that I don't feel things can just be put down to Fibro or urticaria. I asked about my blood tests being slightly out on a few which she seemed surprised that I knew... I also asked her to check if skin biopsy result was back and low and behold it was.

It clearly mentioned about inflammation and lots of other things I couldn't quite see so I politely asked for a copy and guess what... She didn't have a printer to hand so once again I said that I was sure somebody in department could print a copy for me:lol:

Off she wondered and 15 minutes later came back with the top Rheumy as I expected she would! He explained that the biopsy showed that I had urticarial vasculitis and that he is going to speak to Dermy and make an appointment to see me with a view to giving me 'hydroxychloroquine'. Not fully up on condition or meds so will be going off soon to check this great site for more info.

I did say to top Rheumy that I have now been diagnosed with one of the things he first suspected I had 12 months ago but because no bloods showed I had then it got thrown out of window. I also said that if this has come back then maybe relying on bloods to show for a CTD could be a long wait. He finally acknowledge that bloods don't always show and that they are going to once again keep a close eye on me...we shall see:hehe:

Wow! What a great appointment. I truly feel had I not stood up for myself and put my point across I would have been fobbed off but now I think he spoke to me much differently and thought more of me.:wink2:

I hope that this is the start of moving forward and would like to thank you all for your support and advice xxx
Without you guys and my family I may well have said forget it and try to carry on in this awful mess.

Thankyouuuuuuuuuuuuuu

Mrs M x

 

[Maia]

Well done and the medication name he gave to you is the generic name for Plaquenil which you should be very familiar with!

I'm very happy for you that you had a good appointment and feel so good about it... and how you handled the various things that came up sounds just superb. The perfect mix of respect for the doctor, and your knowledge and a little bit of standing up for yourself.

 

[Barb G]

Good for you Mrs M!

Things aren't going so well for me. Have done what you did, still waiting for answers, still haven't been provided lab test results. Had to call for another prescription for hydrocodone today for the pain. They don't want to give it to me, don't believe my pain warrants it, gave me the run around, then said they would call me back later with a final answer. They talked about fibromyalgia but nothing else as if the permanent charley horse in my neck currently diagnosed as cervical dystonia doesn't exist not to mention that I feel like I have a bad case of the flu that never goes away or improves. I am in so much pain all of the time that I can't do much of anything. When I'm feeling slightly better, usually because of the hydrocodone, and try to get something done, the pain increases and I have to take even more hydrocodone.

Sorry for the rant. I am genuinely glad you have had some success. I hope it continues.

Barb

 

[Katharine]

There was me typing away and zooooop it disappeared into cyber space :rotfl:

I wanted to say well done!!!! It can be a hard step to take but one that redefines boundaries and can lead to a far better doc/patient relationship. Hopefully a whole new beginning for you. And, you'll see, once you've done it, it gets easier to repeat!

Sounds like a super appointment and we all understand the great lift that can give us :woohoo:

Katharine

 

[doris999]

i REALLY HOPE MINE GOE'S AS WELL NEXT MONTH,
WAY TO GO ONWARDS & UPWARDS.

SANDRA....

 

[Marshmellow]

Good for you putting your foot down and standing up for yourself!

Rachel

 

[greenhaggis]

Well done for being assertive!

 

[Joandublin]

What a wonderful post to read! Well done Mrs. M! Give yourself a great big high five :highfive:

Thats the kind of thing this site was made for - stiffening one's spine for the 'battle'. Sounds like you passed muster with flying colours!

Luv n stuff
Joan:rose:

 

[Mrs M]

Thankyou Ladies

I simply cannot stop smiling:lol:

In all this time and finally I feel that things are moving, it feels so good. I hope that all you lovely people out there having the same battle that I am sticks with it. We all know our own bodies and how we feel so we need to keep going and hopefully come out the other end. I'm sure that I'm still going to have a battle on my hand but now I'm ready to fight again!!!:hehe:

I wish all of you out there well.

Mrs M x

 

[pollianna]

Aww Mrs M, how pleased I am to read this. You have done so very well. You will feel better with the plaq. I have only been on it 3 weeks today and already the med is well into my system. I had a rough few weeks emotional and all over the place with tiredness but keep with it.

They told me I had fibro 10yrs ago and simply left me to suffer. I would have gone mental if it wasn't for the internet and the medical university of google :bigsmile: Now I am mad cause they haven't referred me to a Rheumy in my City in between London Appts but your post has given me the kick up the butt I need to go get myself one here.

Onward and upwards from here I hope :hug:

 

[keebler]

Way to go!:woohoo:

I think doctors are impressed with patients that understand what they are talking about. Plus we have the knowledge which is a great bonus.

I can't stop smiling for you! Way to go!
Love,
Lyn

 

[Lily]

I'm really really REALLY happy to hear this :yes: persistence and a little bit of knowledge really are paying off for you :thumbs: Good for you, many of us have had a bit of a road to diagnosis of our illnesses but if we don't stick up for ourselves then we get left on the shelf!

Go you was a very appropriate title for your post :foryou:

:woohoo:

love
Lily

 

[nettyunicorn]

hi and congratulations!!!!

Just shows that i need to as its been said 'stiffen my spine!' and start standing up for myself!!!!!

heres to an improvement in your symptoms!!!


nettyxxx

 

[onetay]

Mrs M,
Way to go!!! I have been saying it for years that sometimes doctors need to be reminded that they work for you and that going to an appointment educated and letting them know you are makes all the difference in the world. Keep a close eye on the doctor also and make him keep his word to you. I am so proud of you and what courage it took to show you knew what you were talking about. You are an inspiration to many here. I hope you are doing well and feeling well.

 

[Mrs M]

Hello!!

Thanks Guys for your messages

I knew that if I didn't stand up for myself at that appointment I would have been put on the shelf and I think I'd just got to the stage where I had to speak up. All too often I would go to the appointments with all good attentions but then just sit back and listen to the docs because what did I know!!! Well because of this wonderful site and the knowledge it has given me I realised that I was the one that was poorly and that my signs and symptoms weren't going anywhere. ( still learning though so will still be bugging you all:lol

I fully respect the docs but now I have a voice too:lol: Let's hope that my appointment will be along soon for the meds and things will progress.

Anyway I better toodle off as my little Princess wants to spoil me for mummys day. Lucky Lucky Me!!

Mrs M x

PS hope all you yummy mummys out there have a great day:foryou: