I’ve just joined this forum as am looking for some much needed advice and support. I have been given a provisional diagnosis of autoimmune disease by my GP following blood tests and am ‘impatiently’ waiting for an appointment following a referral she has made for me to see a consultant in rheumatology at my local hospital. I worried sick but, have been told I could be waiting up to 4 to 6 weeks for an appointment which just feels like forever and gives me way too much time to think the absolute worst. The reason I had the tests done was because in June I developed a raised red rash on the backs of my hands, my arms, my feet, my chest and under my eyes/across my nose. Apart from this rash I don’t have any other noticeable symptoms: I don’t feel unwell in myself. The lack of other symptoms is really making me question the GP as surely if I had this disease I’d feel unwell in myself? It just seems like such a big leap from a low white blood cell count and a rash to autoimmune disease??!!?? Any advice would be most welcome.
Thanks!
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As there are many different types of autoimmune conditions, you will find that GP's like to observe the symptoms before making a definite diagnosis along with ruling out any other possibilities, as lupus tends to mimic other diseases. Do you know if you had an ANA (Anti-nuclear Antibody) blood test done?
Would you like me to send you an information pack? Just send me a private message or an email with your address and i will pop one in the post for you. I can also include our factsheet 'Lupus and Associated Conditions' for you too if you think it would be helpful. hayley@lupusuk.org.uk
Hi Hayley. Is it possible you could send me an info pack on Lupus please..... Still waiting for a diagnosis other than "you have an autoimmune disease" Thanks in advance.
I'm afraid Hayley is no longer at LUPUS UK, but we would still be very happy to send you an info pack. You can request or download one from our website at lupusuk.org.uk/request-info...
Thank you for such useful information. Im now 99% sure I have lupus although ANA came back neg when I had it done a couple of years ago but had positive cryoglobulin Anaemia? I'm now losing my hair, I'm still anaemic, hands and feet hurt all the time, I have a rash around my hairline nearly all the time and my scalp is sensitive to touch. Does lupus cause numbness? I have varying degrees of numbness all over my body complete loss of sensation in my hands and face also unable to detect temp changes correctly. I also have hypothyroidism, migraines and cluster headaches, JHD and recently diagnosed with fibro which I now believe is part of the lupus? About every 3 weeks I feel like I'm coming down with a head cold, My head hurts virtually all of the time, I have been retired from my job due to I'll health!!! Am totally fed up.. I don't know what to do next in all honesty.....
Lupus can possibly cause numbness if it affects the nervous system and around 20% of people with lupus have an overlapping diagnosis of fibromyalgia.
Have you been investigated for lupus by a rheumatologist or are you just under the care of your GP? Has your ANA been repeated at all since it was done a couple of years ago?
Hi paul. Thanks for getting back to me. Only had one ANA organised by Rheum. Backwards and forwards to GP. I'm not sure how to move this on? Everything seems like a constant battle for answers... Rheumatologist diagnosed Fibro but nothing more said about Lupus. Any suggestions would be greatly appreciated.
It is probably worth asking your GP to refer you to another rheumatologist for a second opinion. They can do full investigations for any autoimmune diseases and hopefully get a diagnosis and treatment plan sorted. It may be best to get a referral to someone with a specialist interest in lupus. If you let me know what area you are in, I would be happy to provide you with information about any lupus specialists we know nearby.
There a few specialists around the area that I know of. The main place is Birmingham because City Hospital, Queen Elizabeth Hospital and The University all make up a LUPUS UK Centre of Excellence - lupusuk.org.uk/centres-of-e...
In Nottingham you have the Dr Peter Lanyon at the Queen's Medical Centre.
In Leicester there is Dr Hassan at the Leicester General.
It is possible that there is a rheumatologist with a specialist interest in lupus based in Burton, but I do not know them myself. If you want to check for sure, it is worth getting in touch with our West Midlands Lupus Group because they know more of the local consultants - westmidlandslupus.co.uk/
If you feel well in yourself, why worry? You could make yourself Ill by worrying. Look at it this way, the gp sounds a very good one, in that they are getting a second opinion to rule out any possibilities of auto immune disease.
IF it ends up that you do have an illness, it doesn't mean your whole life style will change, just adapted slightly. I have a diagnosis of many auto diseases. My lifestyle hasn't changed very much. I have to be careful when I go out in the sun as I get a rash, doesn't mean I can't go out, just have to put extra suntan cream on (which is not a bad thing). I get aches and pains which leads to having to 'slow' down slightly but I still carry on normal activity.
If it's not an auto immune disease it needs to be ruled out so that they can find out what it so and give you the correct treatment.
It is difficult having to wait but 4/6weeks will fly by. This is a good site with lots of lovely support. Keep us posted on how you get on.
Well said Chris21! No use sliding into despondency. I have lived with a few autoimmune conditions in excess of 30yrs plus having orthostatic tremor for 15yrs. None of it is good and I get fed up at times but I swallow the pills and get on with the good tjings in life! I'm 76yrs old.
To have an autoimmune disease your blood would show a medium/hig positive ANA. Without it I doubt a rheumatologist would consider it an option. On the other hand, you must be asked to have a skin biopsy done to check whether the rash is discoid lupus (different to systemic lupus).
The thing with "I feel fine" is that had you been fine in yourself, the rash wouldn't have appeared. These symptoms do not come out of nowhere - there are indications that there is something going on in the body. The question is then what it could be, how serious and what can be done about it.
I am impressed by your GP - you'll see on this forum many of us who had to wait years for a diagnosis because the GPs weren't taking the symptoms seriously. In your case, if everything turns out to be some allergy or transient skin complaint that could easily be resolved, then at least you've investigated it properly.
I understand your reaction and the fear and the need to have all the tests done yesterday. I'm sure many on this forum would share those with you, I certainly do. If you want to move quicker you could always try going privately, although the initial blood tests are likely to be extensive, so will rack up the cost (a full set would be between £800-£1000). If you know who you're being referred to, research that person online and see if he/she consults privately and maybe call the secretary. Privately you could see a consultant on the same week.
Try not to panic just yet and avoid reading every article on the internet about autoimmunity. Not only that there are many outdated articles out there but there are many autoimmune diseases and until you know what you've got, you'll scare yourself to death unnecessarily. Even if it is confirmed that it is an autoimmune disease, don't forget that not everyone has all the symptoms, each of the sufferers has his/her own set that he/she copes with, from mild to serious.
My doctor didn't say positive but he said that my ana was elevated. Sorry if this seems like a dumb question but I'm not used to going to the doctors, I always seemed healthy up until the past couple of years.
If you didn't have the UC, then how would it cause an elevated ANA? Doesn't make sense.
The fact that ANA is positive is not enough to indicate an autoimmune disease if it is a low titre - that's because healthy people sometimes have low positive ANA with outgoing on to develop autoimmune diseases.
The general rule seems to be that an autoimmune disease is more likely if ANA is higher than 1:80 and there are symptoms present - in your case, the rash. Ask your GP to tell you the titre, not just "elevated".
What do you mean it doesn't make sense? I was being treated for something that I didn't have and found out in July that it was a spastic colon and I had the blood test done a month prior. So, therefore my doctor told me that it could possibly be from the UC.
I know that a positive ana does not automatically mean lupus... I have quite a few things that are going on besides an elevated ana.
I never went to doctors before all of this started and therefore didn't know to ask because I've never heard of it. I know now to ask
All this started 2 yrs ago when I was diagnosed with UC with chronic inflammation. I have a new doctor because I moved since I was diagnosed. He told me that my ana was elevated and sent me to a rheumatologist in July and he had another colonoscopy done and that's when they told me it was a spastic colon. Me and my doctor didn't like that rheumatologist because he is a very rude person. So, I'm on my way to see a new rheumatologist.
The rash under your eyes and over your cheeks are classic lupus. That alone will give someone that diagnosis. My mother had it, her half brother has it and I have 3 autoimmune diseases with lupus being one. Everyone's symptoms are different i think. I think that in all the years I've had this, about 30, I think I've only had a couple of positive ANA tests. My rheumatologist here in the US goes more by symptoms. I sincerely hope you continue to feel well with no symptoms. I take hydroxychloriquine for it along with medical marijuana. I've also taken prednisone off and on again for short stints. Good luck.
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