The emotional experience when a specialist finally decides to take you on as a patient

[hope23]

I have been sick for 7 years in a months time, i have been referred more times than i can count to various departments at the hospital, rheumatology specifically atleast 4 times, i was seen once from those four or more referrals and it was a joke, a cursory examination and being told yip youve got pain in many places and then being sent away and discharged from the service, i had lost all faith in specialists at the hospital until today.
My doctor managed to speak to one of the better rheumatologists in my area and then made the referral, they agreed to see me but i was very skeptical,
Long story short, when this rheumatologist agreed to take me on as a patient and do everything she could to give me a better quality of life i burst in to tears. To finally be acknowledged that it really is as bad as you say instead of the constant unspoken 'your not sick enough'
This is the first glimmer of hope of a better quality of life ive had in a long while to say i needed it, is well, putting it mildly
I try to stay positive because dwelling and stressing and depression makes things worse but i cant always stop those thoughts and feelings, its such a good reminder to not lose hope and not stop trying and pushing for a better quality of life, i want to do more than just exist

 

[mellorheights]

I have been in pain most of my life. Only when I was singing professionally did it subside a little. I am 75 and have been falling for the last 5 years. The doctor though it was fibro now he doesn't (now that I can hardly walk). He is sending me to a neurologist. ridiculous. They neve find anything and just say I'm getting old and I have fibromyalgia. Yippee. Then they tell me it has nothing to do with fibro but they don't know why I lose my balance and fall. Ah well.

 

[hope23]

The flip flopping is so unhelpful and makes more of a rollercoaster of what is already unpredictable enough as it is

 

[Auriel]

Hello Mellorheights, you're new! Welcome to the forum!, ️ , I'd so love to hear about the singing some time (if you don't mind talking about it, that is : ) )

 

[mellorheights]

Hi Auriel what do you want to know? Of course I don't mind talking about it. I miss it terribly.

 

[Auriel]

Anything, what you sang, where you sang, if you have any albums, if there's anything on youtube or the internet we can watch (I love music) ❤❤

 

[Lizzyloo]

Hope23, that’s great. I’m so happy for you. If they give you any pearls of wisdom please let us know. I hope it all goes really well for you but even just feeling more optimistic is a gift in itself.

 

[mellorheights]

You tube under Marilyn Middeton Mellor or Marilyn Pollock Mellor Earlier rock under Hurricane

 

[Auriel]

Oh, cool, I'll have a look!

 

[Auriel]

Oh my goodness, I just heard you singing a song greenfields @mellorheights. It almost made me cry (could be the song or the way you sang it)

 

[Auriel]

I'm glad you've found a specialist that's sounds nice and is gonna take you on hope23, we understand (It does feel like just existing sometimes) sometimes, it feels like the cfs has complete contol over me when I just want to do so many different things!

 

[hope23]

(It does feel like just existing sometimes) sometimes, it feels like the cfs has complete contol over me when I just want to do so many different things!

So got some bloods results my ANA came back as 1:327
Normal range is between 1:30 &1:40

Rheumatologist is looking in the direction of and Ehlers Danlos syndrome so we shall see, she may decide its not fibro cfs at all or i have that and something knew now to get the mri of spine hips pelvis and then i will see her again

 

[Auriel]

I'm glad they're looking more into it ️ ️

 

[hope23]

Me too, finding out more and investigating more can only be a good thing

 

[cookiebaker]

So got some bloods results my ANA came back as 1:327

wow, that is pretty high..
i was told that even a 1:80 (my result) is not all that uncommon in healthy people

Very glad to hear you are making progress in getting things sorted out.