autonomic dysfunction anyone?

[trc1962]

Hi,

Dealing with this flare still and it is getting worse. Due to the small fiber neuropathy my stomach won't empty much and I can't go to the bathroom. I have night sweats lately and I am sure the small fiber spreading all over is to blame. My rheumatologist said we don't treat the neuropathy, we treat the symptoms. I am going to ask him to send me to a neurologist who deals with this stuff, but not many do. Prednisone helps but I am out and dr said no more. Thanks, I am just all out of whack, buzzing and kind of weirdly dizzy, hate this darn disease.

[meirish]

I would sure get to a neurologist as soon as possible. Really hard to believe that your rheumy didn't refer you to one sooner. It is hard to play catch up when something like this gets worse and you don't have the appropriate doctor to take care of you.

If your rheumy doesn't try hard enough to find you a neurologist I would ask your primary to help you. One of your doctors needs to get on the ball and see that you get seen sooner rather than later.

Actually, the colon issues and stomach can be a separate diagnosis so your GI doctor should be able to prescribe meds that will help you. Somehow or another it seems that you need more specialists than you have. When you have colon and stomach neuropathy it is a separate condition that needs to be treated by GI not the neurologist or rheumatologist. For the life of me my mind is on hold and I can't think of the name of the GI issues are you suffering from. There is one specific drug that many people say really helps them.

Hopefully, someone will come on this post and help with these things I can't remember. Rheumatologist usually treat things like Sjogrens but when the other issues come up such as neuropathies a referral is usually made. Actually, the aches and pains and fatigue, etc is what the rheumatologists usually treat. Some of the arthritis, etc. Just depends because there are so many specialists that take over when things get complicated. Hope you can get some help as soon as possible.

I don't know how much prednisone you were on but usually a person that has been on this drug for a long time needs to be on a taper dose so that the health issues it is being taken for don't build up and hit you all at once. If your rheumy doesn't give you a taper dose I would go to your primary doc. Even a dose such as 5 or ten men taken everyday and then stopped cold turkey can result in increase in symptoms. Sometimes the taper dose will be every other day for a couple of weeks and then to every third or 4th day.

When you have been suffering so much the way it is and the prednisone is dropped don't be surprised if you are bloody miserable and get to the doctor and get referral to GI and neuro, Don't mean to be bossy but I know how these things can play out. Good luck. meirish

[trc1962]

Thanks for your reply meirish. I see my primary tomorrow and need referrals and I will be kind but demanding the referrals. My rheumatologist did offer me a pred pack but said try not to take it. I tried but couldn't do without and so I took 4 mg and I felt so much better, my stomach emptied, and I went to the bathroom. My primary of 24 years retired just before covid, but he used to have me take Reglan for a few days to jump start things and it really helped. That was before I was diagnosed with Sjogren's am hopeful for more help and guidance.

[meirish]

Will be glad to hear that  you have gotten referrals. I know from recent experience that it is just really terrible to have to move to a different primary or have them retire. I am really lucky with all my PAs at my new clinic and most of the doc especially my new primary. The neuro situation is getting me down plus trying to find other specialists.

I knew it would be a challenge moving and finding new docs but the covid thing really has thrown a wrench in health care due to shortage of so many medical professionals. I almost wish I was still young enough to work---almost!!! lol Take care. meirish