need advice again

[bobbys mum]

I haven't posted for a few months, did before in connection with pernicious anaemia everyone since then has been saying every symptom I've had is connected to it and ignored everything else I have after a lot of trouble been able to get copies of my blood tests and noticed my rheumy level was 30.0 REF (0--30) this was done in august 2007 and not been tested again as told this was OK spoke to a friends husband who is a doctor and he is this is the very top level of normal and 1 point more would have given me a diagnosis of RA , also went for eye test last week and optician said my eyes were extremely dry and vision very poor in left eye and she wrote to doctor requesting eye drops and ointment she discussed allthe symptoms of sjogrens with me all of which I have when I spoke to my doctor a new one to practice she checked my records and said I had never had bloods done for sjs and my last doctor had only said sjs when I complained of dry eyes and nose mouth etc she is now getting my bloods tested tomorrow , will probably have to wait about 3weeks for results can someone tell me what I should be looking for eg. what the levels and range bloods should be as I no longer trust the doctors who say everything is normal have also seen neurologist who confirmed peripheral neuropathy again saying secondary to PA I have now read PN can be a symptom of sjs as well sorry for long tale but am even more confused than before thanks

[Scottietottie]

Hi Bobby's mum 

I'm glad you're getting the right blood tests now and I'm sure you'll be on tenterhooks till you actually get the results but hopefully you are getting nearer a dx. The importnat thing is that they treat your symptoms in the meantime.

Take care - Scottie 

[salsen]

Having the bloodwork does help the doctors in your treatment but it is not the final word.  Many like myself have normal bloodwork with all the symptoms of SJS including pn.  The most important thing you can do is treat the symptoms no matter what the test results in order to keep as normal of a routine as possible.  Good Luck to you.

[Patze]

Hi Bobby's mum,

Scottie and Salsen are right, I feel it's better to be treated so you can function fairly well then having the "label".  I to am sero negative with a bunch of symptoms, and even though I don't have the Sjogren's "label", I'm still being treated and that's doing me a world of good!  I too will keep my fingers crossed for you that your tests will help point your doctors in the right direction.

Take care -

Patze

[bobbys mum]

Thank you all so much for replies, the nurse who did my bloods today couldn't understand why they had never been done since 2007 she took 6 files for full blood count liver, kidney function, rheumy factor sjs and another she wasn't sure about as yet have now got eyedrops mouth spray and nasal spray also gamapenton for PN hopefully will now get somewhere thanks again will let you know how I get on with results

[bobbys mum]

Can someone advise on sjs and confirmed PN I started on gabapenton tablets last night and have spent all day in a daze fuzzy headed and sleepy I know its only a start but I've read the enclosed label with drugs and a lot of the side effects of these tablets seem to cause the symptoms I am already suffering so am I trying to kill pain and discomfort of PN and causing symptoms of sjs as this is all new to me I hope you dont mind me asking as I am a person who needs to be in control of situations I/m finding it very difficult to understandmyself least of all explain to family and friends my Pn causes me to be very unbalanced and shaky anyway (regners positive )and these pills can cause these symptoms as well I am permanently exhausted and getting b12 jabs 2 monthly for pernicious anaemia which is according to British guidelines can someone maybe explain how best to cope with combined symptoms thank you