Sjogren's or something else
 

I have not posted on here in quite a while. Life pulled me in other directions (raising an infant to a now almost 5 year old). On the Sjogren's, I would advise any one with a positive ANA or lip biopsy to explore an autonomic disorders physician.

I was told I had Autoimmune Autonomic Ganglionopathy, AFTER about a dozen different diagnosis. THAT is the correct diagnosis and I still do fit most of the diagnostic criteria for Sjogren's except for positive SSA or SSB.

I think there are a LOT more of us out there with AAG than any one comprehends because most of us never make it to an autonomic disorders clinic. After 3 years on IVIG I stopped it due to my kidneys trending south and I didn't see enough improvement on IVIG, however there are other treatments, such as plasmapheresis. IVIG tends to be tougher as you age. I am on low dose prednisone right now.

If you have a diagnosis of SFN or PN and have dry eyes, dry mouth, vision issues, severe headaches, especially 'coat hanger' headaches or 'migraines', insomnia, bloating, swallowing issues, constipation, feeling very full after not eating much, heart palpitations, chills, hot flashes, inability to sweat or adapt to either heat or cold temperatures and 'chronic fatigue syndrome'......you may have autonomic issues. The dry eyes and dry mouth tend to put people into the Sjogren's diagnostic work up and when nothing is found by rheumatologists, they don't seem to understand that a neuro referral is needed and the patient is discharged or frustrated enough to leave and not get treatment. I have found very few rheumatologists who are informed on neurological issues.

AAG is a different entity than Sjogren's but the symptoms are very similar in terms of pain, dry eyes and dry mouth. The hypotension of AAG, will eventually leave you with little or limited ability to be upright.

Yorkiemom,

I agree with Cyclelops about AAG. I have both dorsal root ganglionopathy as well as autoimmune autonomic ganglionopathy...causing peripheral neuropathy and severe autonomic symptoms. I too have a pacemaker (since 2004) and recently had a new one placed last year. My NMH (neurally mediated hypotension) is at the point of severely limiting my ability to be upright at times. It requires life-style adjustments as well as medications.

I can no longer use steroids (even low dose) as I have Cushing's syndrome from years of taking steroids either by IV or high & low dose orally. So I currently receive high dose IVIG monthly.

I have had plasmapharesis, but it is last resort type treatment and not effective or appropriate to do this every couple days for long term help...but it can/will help for acute or emergent situations.

The skin sensitivity (allodynia) can be from the reduced small nerve fibers (SFN). I don't think there is much to be done for this (other then finding materials that don't bother you so much). The magnesium lotion MrsD suggests for PN symptoms may help...worth a try.

My days on prednisone are limited too...been on too long and it shows. :/ I'm in the process of weaning off, but I just weaned off pain pills too, so it has been a slog. AAG doesn't really give a person a lot of options with medication...Every pill you put in your mouth affects the neurological system and with AAG, it can cause profound issues. (Makes me wonder if they cause AAG?) It's been a long slow slide...with a way to go yet. I'm still up and around. I can walk a mile or even two on some days. I can do a treadmill for a short time. I can not do housework much...little bits, now and then. I could not live independently in my current setting. :/ Hubby is home all the time and we are still raising my grandson, who is now 5. (Had him since he was 6 months.)

As to what causes this, who knows? Until we really organize, raise money and raise awareness, we won't know much and people, especially women, will continue to suffer and die from this while rheumatology and neurology chase each other's tails.

I'm done being a guinea pig for a while, until they have some concept of what they are doing.