petalnumber210 years ago

Hello Franbie,

You certainly have had a struggle to be heard and taken seriously for a very long time and I know exactly how frustrating it is. Slightly different, but still autoimmune disease, I had urticaria with swellings of lips, eyes and also tummy. It took 10 years to be diagnosed with angeodema/urticaria and finally RA. But that's enough about me, I would say that you are doing all the right things by taking photo's, diary and taking someone with you to your appointment.

The very fact that your appointment has been brought forward is a positive factor particularly as the X-ray report suggests RA. But when you have lived with the frustration of not having any firm outcome from all your previous visits to rheumatologists it's quite understandable that you have doubts about this new appointment of yours.

You have pain in all the same places as I have at the moment and like you I am so tired that I don't know what to do with myself.

I hope what I have written here helps you a bit even if it's just knowing that your not alone with your pain. My thoughts are with you for 19th March and I wish you good luck.

Take care till then and rest as much as you can, like me. June xx

Franbie in reply to petalnumber210 years ago

Thanks June. You have helped with what you have written & it's is nice to know I'm not alone. I hope you have some relief soon. The tiredness is so hard to deal with it's really hard to get things done. Franbie

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petalnumber2 in reply to Franbie10 years ago

Yes Franbie, I find the tiredness so frustrating, particularly as I look after my sick husband. I took myself off to bed yesterday as soon as he went off to have his dialysis, I don't do that very often, but perhaps I should because I feel a bit better today.

It's good that you have had some supportive/informative messages, it all helps doesn't it. I feel very positive about you being diagnosed and treated June x

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Hidden10 years ago

Hi Franbie - June has said it all but I just wanted to say that I hope you do get a diagnosis of RA if that's what you are looking for. Your symptoms certainly sound like they correspond with mine prior to MTX. I remember my 9 months in undiagnosed limbo as being hellish and feeling relief when he said the words "We will call this RA as a working diagnosis" - strange to be relieved at those words but I most definitely was! Good luck for the 19th. Tilda x

Franbie in reply to Hidden10 years ago

Hi Tilda. I know what you mean about being relieved at the diagnosis, it seems a strange feeling but when you know that something is wrong and you are going from pilar to post to try and find help it really is a relief to know that there is medicine out there that can help with your symptoms. My journey started in 2000 at A&E with a swelling in my jaw I was hospitalised because my wbc was high & given intrevenous antibiotics. Thanks very much for the good luck wishes. Franbie x

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Hidden10 years ago

I just can't believe how long you have been going through all this for. I will really cross my fingers for you (courtesy of MTX!). X

minxy196010 years ago

Hi franbie, poor you,fingers crossed that your diagnosis will in fact be sorted once and for all as time is defiantly an element factor in treatment ,it's a shame we all have to fight to some degree,when our bodies are telling us,showing us,but the higher beings in hospitals waste time disagreeing ,when the evidence is sitting in front of them.

The pain in your middle toes ,get them to check for a " Morton neuroma " it's also associated RA, it's like a calcium build up and only affects the two middle toes,my RA nurse had one so she spotted mine when I told her about the pain in my toes.

Good luck

Soft hugs

Angie x ? x

petalnumber2 in reply to minxy196010 years ago

Hello Angie,

I'm constantly amazed by the information I pick up from the blogs on this site. I have no doubt that franbie will find your info about " Morton neutoma " very useful to bring up with her consultant on 19th march.

All of my toes are painful, particularly the joints above the little toes at the moment. I don't think Morton neuroma is my problem, but it helps to know about any associated problems connected to RA. It was great that yours was picked up by the nurse.

It's the luck of the draw at times, isn't it. Hope you are well at the moment. June x

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Franbie in reply to minxy196010 years ago

Thanks Angie. Went to get food shopping today and put those gel tubes round my toes which helps a little. Morton neuroma is definitely worth mentioning to consultant when I see him. Franbie xx

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cathie10 years ago

The 19ths not long now hope they advance things for you xx

Franbie in reply to cathie10 years ago

Thanks Cathie. Me too. xx

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flaxton10 years ago

Hello Franbie

I have just been diagnosed after two years of various symptoms not as unlucky as you have been over 13 years.I am sero negative . I got the results of a bone scan today and have RA in my chest wall and jaw so don't let them tell you it just affects hands feet wrists etc.Keep a journal if you are not already doing so. My mtxt not kicked in yet but remaining positive. I know it is hard but now you know what you are dealing with. keep talking and good luck for the 19 March write your questions down.

Big hug

Lorraine

Franbie in reply to flaxton10 years ago

Thanks Lorraine. I have started keeping a journal & I must remember to write my questions down. Did your jaw swell up at all, mine did a few times & I think looking back now that that was where it all started? I am sorry to hear you have it in your chest wall as well. I hope that the mtx starts working for you soon. My older sister is on mtx and has been for some time now and she feels so much better nowadays.

Big hugs back. Franbie x

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