Can’t get off the roundabout.

[Lizard28]

Hi, everyone, I spend half my life going for hospital appointments, thank goodness for our NHS. Been going to Rheumy doc for about 5 years now, I complain about the usual stuff, fatique, sore joints, rashes that come and go etc, etc. After telling her yet again my eyes are so dry and get red eye every week she finally sent me to an ophthalmologist, he said I have practically no tears in my eyes after the schirmer test and got the nurse in to put the punctal plugs. The small ones she thought were too small and the big ones were too big so on the third attempt she put the small ones in again. But I really feel the difference, why she didn’t send me sooner, I just don’t know but it’s early days, I just hope they stay in. Also she sent me down to get my feet and hands X-rayed. She said I have developed hallus rigidus. She told me a while ago I have like a mixed connective tissue disease, I have had an extremely high RF factor but don’t don’t what it was as I was too concerned with having pneumonitis at the time and couldn’t breathe.

Another illness that they said I had was GCA and was on steroids for about a year, my biopsy went missing but when it was found it proved negative so they dropped the steroids as my ESR dropped to almost normal. Now I’m on my third gastro consultant, they are a breed of their own, they can’t wait to get rid of you, I complained of being sick after eating all kinds of poultry, all fish and soups made with chicken stock, vegan food didn’t work well either but I can eat meat ok. This has taken me 7 years to work this out, I’m sick every Christmas Day but I honestly think it’s an allergy but testing proved negative. I’ve had endoscopies, gastroscopy, colonoscopy, gastric emptying scan, CT Entergraphy, the one that showed I had a problem was the scan, he diagnosed me with Gastroparesis. Now I’m pleased they found something but he instantly discharged me back to my GP and sent us both a letter and was supposed to get a leaflet explaining what it was, she didn’t and doesn’t really know much about it. He wants me to take Enteromycin long term, I am always so sick with this drug and do I want to go on an antibiotic for ever?, I told my GP that the test may have shown this was the problem but not why I can eat meat and not be sick, this is the protein they tell you not to eat with Gastroparesis. I am struggling a bit with all this now. Rheumy thought after this test she may join some dots, after my lymphoma diagnosis which could be linked to connective tissue disease and now Gastroparesis but I’m still not sure this is the correct diagnosis. I’m scared to eat anything. I’ve had to educate myself because doctor discharged me again, I’m sorry this has almost turned into a bit of a long rant but has anyone else had these illnesses and is it possible they are linked? Can anyone catch me if I jump off this blasted roundabout. Thanks for all your support, and for reading my long story which I have shortened.

[SunshineT]

Hello, I will say if you can afford it go private at least for a second opinions as there is so much mis diagnos or mistake done, then you carryone one the NHS.

I have been diagnos with sjogreen syndrome,discoid lupus and athriritis. It took me about 3 years to be diagnos with sjogreen syndrome even tho all the symptoms were there, the doctor thought I was to young to have it, a bit like you I had very sensitive and dry eye they've tried every drop on earth before I almost beg to go see a specialist and to test me with sjogreen as after reading about it I realise that my symptom was exactly the same. Regarding the eye plug I had them to ,they do go out but you will feel it straight away.Do you experience dry mouth too?

Regarding my other diagnos it took them about 5 years to put a name on my symptoms, they've put me on hydroxychloroquine but I had a lot of side effect with that ( hair loss and dizziness) so I have decided to stop for a while and try a more natural approach by changing my diet completely, I am juicing at the moment for 40 days then I will stat eating a plant base diet and meat and fish 3 time a week. the reumathologue and dermatologist agreed to follow me with blood test at the beginning and the and of this just to see if I can stay off the meds.

Hope I could help with something

Best of luck

[Lizard28 in reply to SunshineT]

Thank you for replying SunshineT, I do have a very dry mouth and while getting tested for my lymphoma, three doctors asked me if I had heard of Sjögrens which I told them my Rheumy says it’s not in the blood and she is a stickler for bloods. I take salivax capsules, sometimes I wake up with dry mouth that I stick one on roof of my mouth to help. It comes and goes but I never go anywhere without water. My dentist gives me special toothpaste. I’m about to go back on hydroxy as I’ve been off it during chemo. On B12 and now folic acid. I’m about to throw the towel in and go it alone, so frustrated atm, here I go again, another rant, sorry. My diet is pretty awful and now reading up on Gastroparesis it’s goin to be even worse. I just think it’s awful the gastro doc has just prescribed a drug and left me to it. No follow up appointment necessary he said in his letter.