Autoimmune Desease and Diagnosis

Hello I am new here and still waiting for a diagnosis. I have a lot of pain in my hands and knees mainly but other places too. Blood tests show moderate levels of serum lgG and lgM. I have chronic denervation and renervation in FCU and FDIO muscles in my right arm and marked fall out of motor fibrers. My arms and hands are weak with poor grip. Both hands swell but the right one is worse. I feel achy most of the time and very tired. I have good days and quite bad days when I feel totally exhausted and in severe pain. I have always had low blood pressure but that is now high. I have gastric reflux and chronic sinisitis with regular headaches. I have an underactive thyroid that was diagnosed 6 years ago. My skin is very dry and sometimes my hands and feet get angry, scaly patches that peel. My GP thinks it may be RA and I see a specialist in August. I have looked up every thing I can about autoimmune desease in relation to my symptoms but really I am no wiser. My mother had Scheloderma which goes hand in hand with Reynolds desease but although my hands go very red when cold I don't think I have that which seems to exclude Scheloderma. I am so anxious for a diagnosis and would love to hear from others who have had similar experiences or have any knowledge of Autoimmune deseases and their diagnosis. On the whole I look well but I certainly don't feel it. This was how it was prior to the diagnosis and treatment of my underactive Thyroid and that took over two years to diagnose.

10 Replies

  • hi I have a underactive thyroid had it for 10 years that also took years for a doctor to listen and take notice was going to put me on valium at the time he thought I was depressed !!! when I had the results it shown my levels were so so low nearly none function so been on medication , underactive thyroid can be to blame for a lot of things same as you I try to find out so much myself to try and diagnose and understand my own body but all the information can get confusing , I am 35 and have osteo arthritis in my spine knees hands knees and bursitis in my left side and planta facitis is both feet and totally feeling unwell cant take it any more the rymotolgist said I also have fiybromalgia but I am not convinced I am convinced I have RA sero negative so fighting that one so know how you feel the auto immune disease can affect many things I have the white patches on my body too called vitiligo now its starting to come around my mouth now so noticeable have a camouflage cream to wear under my make up. sounds to me like RA but can take a lot of convincing to the doctor they seem to by pass these things for some reason its the not knowing isn't it that winds you up if you knew a positive diagnosis it may be easier to treat with the right meds good luck and sorry for the spelling and punctuation im pretty rubbish that way :) let me know how you get on

  • Hiya, glad you put up a full post here. Welcome to the site! I think lots of us here have RA an auto immune disease and other auto immune disorders, mine are asthma. diabetes, polycystic ovaries, muscle and feet problems, and RA. I feel like one leads to another which leads to another!

    If you look on the main NRAS home page there are full sections on diagnosis and what to expect from the tests. There are also lots of other websites for specific autoimmune diseases that i have seen that could be helpful to you.

    But all our diseases have a lot in common for example pain, tiredness, skin rashes or complaints, swelling etc. I bet you cant wait till your appointment and so you get to know what is wrong or at least put a label on it so you can get some treatment.

    So thinking of you, keep blogging cos we do have a laugh on here too which might make you feel better for a bit. Thinking of you Axx

  • Thanks Boo77 and Allanah for your replies. I don't feel quite so alone with this now. It really is the not knowing thats gets to me and not receiving treatment. On 4th June I am being fitted with a 24 blood pressure monitor and also have to have a scan for unexplained virginal bleeding ....both on the same day! I don't know if either are related to any other symptoms or not. I am going to have a good read on this site. I am so glad I found it.

  • HI - You may want to look into Psoriatic Arthritis regarding the skin problems too as it is very closely linked to RA and is also autoimmune. I hope you get some answers soon - all these diseases can be very unclear. I'm hypothyroid too. Tilda x

  • Hi - Thanks for the message I have had a look and I really don't know. So many symptoms and different deseases it really is so confusing.

  • It amazes me to find that so many of us have thyroid problems yet my Rheumy STILL poo poos this when I try and talk to him about it. I have spoken to other docs about this too and most have been fairly dismissive of it......... so annoying.

    Like you Ruth I too went 10 years before anyone took me seriously about my thyroid. It got to the stage where I was quite seriously ill in the end until one Doc looked at me when I walked through the door and knew exactly what was wrong with me!

    I sometimes wonder if it hadn't taken so long to diagnose my Thyroid problem I wouldn't have The problems I have now.

  • Hi, I was eventually diagnosed by a locum in the same way as you. I think most Doctors think once you have the meds all symptons go away. They never have for me and I have never lost the weight I put on. I think you are right about the time ut takes ti get a diagnosis and more problems developing later. I have one docctor who is not dismissive who is disabled himself but he is in semi retirement so I can't see him often.

  • Hiya, re. the patches on hands & feet - can you ask for a referral to dermatology to check if it's Psoriasis which would then point to Psoriatic Arthritis? And perhaps take some high quality photos of the patches if they come and go in case they don't coincide with an appointment.

    Luce x

  • Thanks for your advice. I will go to my doctor and ask him. They ddo come and go so I will take photos.

  • Been really suffering the last few days with nausea heartburn headache and really painful hip and back. I have gastric reflux and have meducatiin for that but these bouts have been agonising with the pain radiating in to my back neck and face. Is this something RA sufferers suffer from?

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