I'm back to update and say hello. Things have progressed a little for me because I'm under one large teaching hospital for everything now. I had an appointment with my new rheumatologist on Tuesday - only it was actually with one of his juniors. This didn't matter as he was thorough and perfectly polite. We started from scratch and I felt he was getting ready to give up on me when the arthritis line of questioning was getting nowhere and my examination was wholly normal.

However he got as far as asking me if I had any pins and needles and I laughed drily and told him I certainly do and have done for four years or so. He asked where and I said almost everywhere except my trunk. Thankfully he couldn't find my old neurologist's letters which start off diagnosing a clinicical SFN and then, latterly say that at least part of this is "functional" in his view.

So I told him about the paired ologloclonal bands in spinal fluid and fluctuating inflammation levels in my blood and then he really sat up a bit. He said he felt I didn't have Sjogrens, Scleroderma, active RA or Lupus. He felt my RA might have been post viral arthritis. But all of these would apparently have progressed over five years whereas mine is apparently much the same as it was a year ago. Unless the nerves have died off so pain has been replaced by numbness? So I asked him what could be causing the fluctuating inflammatory markers and paired o bands. He is repeating my Bence Jones early morning urine test next week and took loads of bloods - thinks Vasculitis is a possibility still as it can be very hard to diagnose.

I asked him about possible mast cell disorders, bearing in mind my very long history of allergies and my mum's anaphylactic response to bee act wasp stings. I've never yet been stung but not keen to experiment just for a diagnosis either! He said this would come under immunology and haematology - I think he might refer me on to them which I would be ready pleased about.

Meanwhile I'm struggling a bit with my Hashimoto's hypothyroidism because of doctors treating my blood rather than treating my symptoms. I'm having a colonoscopy in ten days because of chronic constipation and rectal bleeding. I've been put on HRT pessaries for serious trouble below and I feel really sore and bloated. I had an ultrasound which showed womb lining to be fine but ovaries obscured by gas. So I asked for a blood test to exclude ovarian cancer. I've also organised a private test next week for Coeliacs Disease - having stuck to the gluten challenge for three months. Can't wait to dump gluten again in the hope that I become less bloated and tender again, Coeliacs or not. I'm fairly sure nothing will show up in any tests but the rheumatologist will see me in two months time with all test results, including a pelvic X-ray.

I do feel a bit doomed still but really hoping that this new hospital will get to the bottom of my SFN and I won't be in the shadowlands for too much longer.

Hi Mat52

Great to hear from you again - sounds like you finally may be getting somewhere and at last have found an open-minded doctor.

All the best for the many test results when you get them back and hopefully nothing serious shows up but there are some answers to the mystery - and if not - that the new teaching hospital doesn't give up on you.

Hang in there and let us know how you're getting on. from the other end of the world to keep you going.

Hug is much appreciated thanks Bluesfan! Fingers crossed that the investigations reveal enough to get me somewhere but not enough to take me anywhere bad. Mat X

Good to hear that someone is listening and trying to help.

When do you follow-up? Looking forward to hearing the update.

Mat,
Good you are having a colonoscopy soon. It can be nothing serious but the rectal bleeding may or may not be hemorrhoids. That's what I assumed when I went to the ER for impacting/constipation. Afterwards it was decided that since I was cleaned out, I should have my first colonoscopy. Unfortunately I did not heed the warnings about having colonoscopies after age 50. Something that might have been easy to take care of early became serious.

You have a lot going on; hopefully this new hospital will provide you with some answers.


Gerry

Gerry I'm grateful to you for warning me not to be too laid back. I've been pushing for a colonoscopy for about five months but it's taken this long to get there. I have this procedure on 30th of this month. I know something isn't right at all because I'm hugely bloated and uncomfortable. Fingers crossed its something easy to address or IBS. The GP felt it was unlikely for someone over 50 to develop IBS but I've had lots of stress recently. My main fear us Multiple Myeloma because it is incurable. However it would explain the SFN and my wonky markers. Mat

Mat,
You had mentioned having a Colonoscopy done in ten days (your post was dated June 16th). I am hoping all went well. When you get a chance would appreciate an update.


Gerry

Thanks Gerry - yes it is tomorrow so will update accordingly!
Mat

Hi Gerry,

Colonoscopy went fine (apart from being incredibly painful?!) and I got the all clear. I do have two rather swollen, bleeding haemorrhoids.

I learnt from oral medicine doctor this morning that I have gone from being autoantibody negative to having a clear positive ANA of 1/320. Also my IgG avid IgA are both high and I am to have a lip biopsy and ultrasound of carotid and salivary glands ASAP to rule out or in Sjogrens Syndrome. Although I don't have the dry mouth and only mildly dry eyes she seemed to know that it is still possible to have Sjogrens. She feels my numb, tingling mouth is part of a progressive small fibre neuropathy and says the neurologist was wrong to dismiss it as mild and say it was caused by previously active RA. She says the positive results suggest Lupus, Vasculitis, Sjogrens or Mixed Connective Tissue disease are all more likely with these blood results. My CRP has crept up to 19 and my PV is 1.98 which is also high. So I feel at last I may be getting somewhere and terribly relieved not to have colon cancer or IBD. Not sure what has caused the chronic constipation but maybe it's caused by autonomic neuropathy after all?

Thanks for the update Mat. It is unusual for the colonoscopy to be painful; unless the hemorrhoids were inflamed by the procedure.

Are you on any medication that might be causing your chronic constipation; especially pain meds.? The constipation is most likely the reason for your bleeding hemorrhoids.

I am on Opioid Pain Meds and take Miralax regularly. Otherwise, I will have terrible constipation. In fact, it was the constipation, because of my meds, that caused the impacting and the reason I went to the ER and finally had my first colonoscopy. Had I not waited so long to have a colonoscopy, I might have avoided the cancerous tumor that was found.

Hopefully you will be soon getting some answers on your other issues.


Gerry