How many if you have PBC and Fibro

Just wondering how many people have both ?

As I have said b4 Dr said I havent got it and then says I have got fibro

Who do you need to see to have fibro diagnosis ?

Been to neurologist this week as my legs and arms are getting so weak and my right leg is numb all the time would he be able to diagnose fibro ?

I have to have another mri scan now of complete spine

Be glad if anyone can help

Xx

Karen

11 Replies

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  • I have both. My fibro was diagnosed by a rheumatologist who was testing me for lupas. She was also the one that found the positive AMA among her tests.

    The neuro could be checking to rule out MS with the numbness. I get numbness in the tops of my legs when walking or standing for a couple of mins but then the feeling returns after sitting down.

    if nothing shows up with the scan i would ask if you could be reffered to a rheumatologist.

  • You sound the same as me ziptydoo !

    My consultant hasn't told me anything other than u have PBC I have my six month appt in 2wks time so I will ask about AMA

    I've only been twice and all he does is increase my urso and say see you in six monthsend of appt on your way !!

    Sorry taken so long to get back internet probs.

    Always value your advice

    Gentle hugs Karen xxxx

  • Hi,

    I am sure you will be armed with a lot more knowledge about PBC now. That can be quite positive as some dr`s will open up and talk more freely when they think you know what they are saying.

    With others you can just tell that they havent got a clue by what you have read and by what the majority of sufferers are saying which can be quite worrying.

    Have you had your MRI results back yet?

  • My rheumatologist diagnosed my fibromyalgia as well. He also was the one who ordered all the bloodwork that found my PBC! I would definately ask to be referred to a rheumatologist ....good luck!

  • Thank you for advice I will tackle Dr about this taken me 6 months to get appt with neuro !!

    Karen

  • I too have both. I was having pain in joints and muscles and after negative for RA they put me on Savella to see if it helped me. I now feel fantastic now. It was my GP that decided to try the Savella.

  • I would love to feel fantastic again. I have never heard of Savella. You say it has helped you. Have you had any side effects? i must read up about it.

  • I have both also, a rheumatologist diagnosed it in 1999, even though a pain clinic Dr. had sent me to her for she thought I had RA. I had a sed rate at the time. A liver biopsy was done in 1997, but the Dr. said it could be signs of the early stages of one of 3 different diseases, and PBC was one of them. It was 2003 before I had another and PBC was diagnosed. The first blood work up I ever had was 1987 and even then I had an elevated Gamma GT. I also have painful joints, and degenerative disc disease of the neck and spine. Also I have osteoporosis, as I guess most do with PBC. My spine is a -3. I too have GERD and hernia.

  • Ziptydo: The Savella has made me feel like myself again!!! You start off on a packet of pills to get you used to them. But my Dr had me split certain pills in half as I was upping the doses so the 14 day pack lasted me about a month. The side effects if you dont split them I read can be horrible. Nausea, dizziness, heart palpatations, high blood pressure etc. I mostly had dizziness and very little nasuea. Read up on it and talk to your Dr...make sure u tell them to split the pill pack or u might not make it on them. I started feeling better the first week on them. And give it time!

  • Sadly I have just noticed you are in the US. I dont think its available here in the UK yet. But hopefully might be soon.

  • I read in Europe that Savella is used to treat depression but in USA its used to treat Fibromyalgia only. I would ask your Dr.

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