very much in limbo land

very much in limbo land

hi new to this site confused and frustrated sorry for the essay but think it's good to write down my history

started 2007 with dead arms had physio acupuncture and bi lateral carpel tunnel release.Ganglyon removed in 2011 then dead arms again.Lots on electric shock feelings up my back.electricstudy done on my arms inconclusive MRI showed some disc degeneration at this time was able to go about my day normally.

Have had several attacks of what the gp thought was shingles,then about 9 months ago started falling down,cramp in my groin ,bum and under carriage .hands locking unable to hold anything heavier than 2 pint milk,difficulty opening things.Struggling with my communication dad says it's like talking to some one on a satellite .find it hard to walk,my n

knees or ankle give way,cramp can just come on all of a sudden ,some times unable to weight bare at all,fingers are swollen and little finger and the one next to it ache that I wish I could chop them off.i have the classic rash on my face gp has been treating this as eczema and itch years.lately I've been getting blisters in my noise,ears and tongue ,just been told I've got small cyst on my kidney but no action needed,sciatica ,blisters in my hair ,thick ridged nails,more ganglions .not been referd to a rheumatologists,or neurologists still with the orthopedic dept at gebowen not even had results of mri done in February also positive ana bloods .any advice would be app coated as fed up of people saying when are you going to get an answer xxxxxxxxx

7 Replies

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  • The first thing that jumps out at me is untreated thyroid problems... the tests are notoriously crap and the testing parameters too narrow. Thyroid UK has the best advice. You may still have other autoimmune problems, but this is so often missed by doctors unfortunately.

    MaryF

  • thanks Mary will bare that in mind I was thinking along the lines of lupus as I have to use mobility scooter to get round x

  • Hi, I have Lupus and also Hughes and three other things including hypo thyroid.... list of symptoms: thyroiduk.org.uk/tuk/about_...

    MaryF

  • Hi ny209769b,

    First of all welcome to the site and the community and i hope that you find the forum useful.

    Having a positive ANA is a step closer to finding an answer. Does your GP suspect lupus? Have you been sent for any more blood tests to determine whether it is lupus? The next step is usually a anti-DNA antibody test which when showing a strong positive can almost determine the diagnosis along with the patients medical history and symptoms. Lupus can often mimic other conditions so it can be hard to diagnose initially, there are also other overlapping and associated conditions too.

    If you think it would be of benefit to you i can happily send you an information pack which includes a copy of our 'News & Views' magazine featuring stories about our community and also features names of contacts across the UK living with lupus who are available to talk to. It also contains a booklet and leaflet on the symptoms and diagnosis clearly explaining what the process is leading up to diagnosis. Just send me a private message or an email with your name and address and i will pop one in the post for you. hayley@lupusuk.org.uk

    If there is anything else i can do for you please do let me know.

    Best wishes,

    Hayley

    LUPUS UK

  • Hiya

    I really wish I could help, but unfortunately - I'm in limbo too. These illness's are never straight forward and sometimes you have to push the Drs a bit - I would of though a positive ANA would be enough with yr other symptoms to get an appt with a rheumy. It might be wise to chase up your MRI as I had one done recently of the spine and I was told it was down to me to chase the results. It may be worth phoning the department. If not time to get a little assertive with your GP. I'm sorry I couldn't be more help there are a lot better qualified to answer and Mary F certainly knows her stuff. Well wishes

  • I have many Lupus symptoms red rash on the face feel very poorly in sun light painful joints and red bruises. I had my carpal tunnel done about 3 years ago left and right the pins and needles returned but now go up my arm and in my feet I had a blood test last week my GP called me today to tell me my vitamin b12 was low this can cause loss of sensation in the hands and feet so I have to have another test and if that comes back low they will give me the injections if this does not help they will send me for nerve conducting test

  • thanks means a lot to have the support of this forum.i am going to ring my dr secretary again on Monday keep getting an answer machine ,I asked my gp who would refer me to a rheumatologist and he thinks the hospial will refer me,but I will bug them both.still waiting for another result for a further ana test got told by the gp that the blood people wait till they got a batch of results to send to the gp so not just my blood test but other people too ,I'm trying to be patient ,I had to wait 8 months for my pip decision so getting used to waiting lol x

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