please help me if you can

samson888

A big hello to anyone reading this.
My name is Samson.
I called the helpline today and a very nice lady on the phone advised me to write to you.
I really would appreciate any help.
I was diagnosed with Ankolosing Spondilitis over 20 years ago.
I have had very little respite from FATIGUE pain and stiffness in all that time.
I have new Dr and he kindly arranged for me to see a Rheumatlogist.
I have in the 10 months suffered greatly with long and short periods of all I can describe as my brain feeling like it is been squeezed.. and a horrible feeling of lightheadedness and nausea for almost 12 months now.
The last year has also be really bed fatigue wise.
Anyway I have had some blood taken and have recieved a letter with the results.
If anyone can help with these I would so greatful as I have told I may have an aditional auto immune disease ontop of the AS and the word Lupus was mentioned.

ANA was positive with normal stranded DNA
ENA showed positive SM and RNP result at 8 ( reference range 0 to 0.9 )
Urate was slightly raised at 9.3 with creatinine of 82 and eGFR of 88

If any of the above point to Lupus or not or indeed any other disease I would dearly A

dreamdaisy

Hello, it's lovely to meet you but I sorry you have had to find us. I am not a doc nor technical enough to interpret your results - I also think it's something that mere amateurs should not attempt. Does your rheumatology department have a Helpline you could ring? Who diagnosed you with AS and what meds have you been taking to help matters? Fatigue is a very common symptom of an uncontrolled auto-immune condition (or even a controlled one ) I cannot help with the brain squeeze either but I wonder if a nerve or two is being compressed within your neck? I wish you well. DD

samson888

Thanks very much.for the reply DD
I have wrote back to you twice and twice I have deleted what I yave wrote.
mmmm damn I said .. Well you know what I mean.
I take celebrex and dihidrocodine.
Last Saturday I had a MRI on my entire back.
Not the pleasantist thing I have ever had.
You are probally right about my lightheadness and brain squeeze as my neck and shoulder is so hard with spasm.
I dont have a pc or tablet so have to write on my galaxy s2 phone and hard a flustratng.
Thanks very much again. I will now cut and paste as this phone well get accidently broken if i lose this again !

stickywicket

Hello from me too Samson888. I agree with DD that we are not qualified to try to interpret results but I trust you will have another appointment with the rheumatologist who can. It does seem to me though that the treatment you have been taking has been insufficient to hold your disease back. The rheumatologist will probably want to remedy that. I hope it goes well.

barbara12

Hello Samson888 and welcome to the forum
Lupus is like a jigsaw puzzle my friend has it and this is what her rheumy always says to her, it took him 3 years to diagnose it, but yours seems to be on the right path and checking everything .
The MRI you had will tell them a lot and show if anything is going on with your joints.
Like DD say you could have compressed discs in your neck, I do hope that you can get through to your Rheumy or GP to see if they can give your more info, and I do wish you well with everything..

samson888

Dear Barbara and Stickywicket.
Thanks for the messages.
:?: I have been reading some of the posts on here.. wow.
There are some very brave people on this site and so much love too.
I wish all of you a pain free and worry free weekend

marrianne

Hello Samson ,You are brave to ,stick with us despite our problems its a good place to be hope your having an okay weekend and you get some answers soon Marrianne (()))hugs

samson888

Thanks very much Marrianne,
Feel ded lucky. So many people wishing me well.
I did forget to mention that I have rhuemy appointment
on the 3rd June. so im hoping I will get answers to the blood results.
I have been doing a little research and being ANA , SM and RNP is very likely
to be another auto immune disease.
Im really looking forward to getting clarification though.
If it is what I expect there are few meds that will help me and that will be brilliant because Ive felt pretty rough for over 20 years plus.

dreamdaisy

it's good to hear back from you and I hope our support and encouragement will help you through the next couple of weeks and maybe longer, yes? Phones are miracle things but I have never tried to access the forum from mine, I am not patient enough! DD