Update: Cellcept and the CTD clinic - plus oral medicine - both today

[anita]

Hopefully this Dr. Price will have a more logical and positive take on the IVIG and SFN.  Certainly she knows (unlike the others that you've seen) that there are well documented positive results using IVIG for SFN (especially with Sjogren's).  Maybe take one of Birnbaum's articles which outlines the use of IVIG for SFN in patients with autoimmune disease.  Or that of many other doctors in many other countries.  The UK is not this behind the times.  It must just be a thing for them to say (that it is not used for SFN) so they save the system money.

I honestly think you would have noticed improvement with your pain and neuro symptoms if the Cellcept was working.  I noticed improved within the first month...just as Birnbaum expected I would.  Sadly, I couldn't stay on it after life threatening infection.

Have you had a barium swallow test?  The radiologist watches on flouroscope WHILE you swallow different substances (laced with barium, so they show up on xray), so he can SEE first hand and in motion your swallowing function.  They can see if there is any delay, obstruction, etc and determine if it is structural or nerve related.  This is NOT a high tech test...it is very basic and routine here in the states.

I'm glad you are having a sleep study done.  I am supposed to have one myself for my profound fatigue (like no fatigue I have EVER had before).  I also found a swollen lymph node in my arm pit and the ultrasound showed it being VERY abnormal.  They rushed to get a biopsy as they feared cancer (Lymphoma).  But it reduced in size so they cancelled biopsy and now think maybe lyme disease or some odd infection causing my fatigue, chills/sweats etc. 

When will you see Dr. Price??

[MAT51]

Many thanks as ever for your advice Anita. I will see her on the 9th October - I only get 30 mins for my bucks but apparently, if no one is in after me - she's usually quite flexible about timing. The main thing for us is getting there as I find travelling around really hard just now. I think the autonomic issues are worsening because I seem to get very hoarse and breathless as the fatigue kicks in daily. My husband is driving and at least, this time, we are only travelling ome long day each way. But it's a long way and a lot to pay for 30 minutes! I'm hoping to send info on to her her in advance and my main question will be about IViG as treatment for my neuro symptoms. If she thinks it's an option they might consider in my case then I wil ask her to write this to my neurologist rather than my rheum - since it since under her discretion.

Also do you know anything about hyperbaric chambers used for MS sufferers? 2 RA people I met were having this regularly here and feeling some benefit so I thought I'd ask.

I think I will be getting a barium swallow - they are commonly done here too.

Yes I do think same about Cellcept. The bad taste and burning mouth absented themselves, as did a lot of the disequillbrium for about five months so my neurologist and rheum thought this enough. But the disequilibrium is slowly returning, the bad taste and facial issues and tinnitus are all back. And the vascular doctor can tell me until he's blue in the face that CRP goes up and down with any inflammatory pain including osteoarthritis, and that my ESR/PV will always be high despite immunesuppression because that's the Sjögren's beastie -but all dropped significantly with Methotrexate, Plaquenil and Prednisolone. I guess I'll stay on it until I see him again in December because I am okay on it and I owe it to them to talk this through. But only by stopping it will I know.

I'm so sorry about the possible Lyme and extra fatigue. Are they treating you for Lyme now? My cousin's and their children all have Lyme and it is a daily grind for them all I know. 

My fatigue has seen me collapse a few times lately on days out - but i think it's partly due to the lumbar degeneration, which I feel is turning very sciatic now. Also my blood pressure has slumped recently since I've lost quite a lot of weight due to the issues I'm having with the awful rancid taste and trouble swallowing and nausea/ no appetite when the constipation is bad. Happily the new laxatives (one daily one occasional)  are both helping a bit with the flank pain and nausea though. I've stopped using the osmotic and the fibrous one now and this has helped greatly too.

I'm also sticking to very plain, non fibrous foods (low Fodmap) - which is hard when my sense of taste and smell have gone walk abouts as foods that don't have much taste to them are harder to swallow for me - including soup and porridge, Mediterranean foods and cold foods. Very counterintuitive somehow but I just crave to nibble toast spread with marmalade or marmite, swallowed down with lashings of hot milky tea! I'll let you know what Dr P has to say in October.