Sjogren’s Syndrome – Introduce yourself and meet others

Yes, currently. First, my ear wax disappears for 8 yrs. From the interferon, it returns with a terrible earache I've had for a month now.

I have lost my belief i in most doctors. Upon reading mnyboys post from an hour ago. I have just realized that the very low white blood count and other very low blood readings which the doctors cannot understand might very well be from the sjogren's that I have. My fingernails (all 5) on my right hand have now been so bad for over 3 years and will not heal. When the nail bed is exposed it is so very painful. The doctors in my area are quite inexperienced with Sjogren"s. Anyway, yesterday I saw my cardiologist who I asked for a referral to Mayo in Jacksonville for the vascular problems. Perhaps when I am there I can also ask about seeing a Sjogren's specialist. If it could be done that way. I am falling apart with so many ailments and I need a copy machine that can put me together some how. Ha, ha. SMILE!

I am sorry, living is so hard with this. I live with my son who is no longer wanting to hear my complaints so I vent here, because I know you can relate.

@peach414144 🤣

Yes, it does have everything to do with your white blood count. They got very nervous when I requested my records, even calling me on the phone wanting to know why I was requesting them, can you believe that one?!

Dear sueleerock, You must be so frustrated. I know and share with you. But, please take this with caring and love: Somehow find another source, person, etc. to share your pain. I am sure your son loves you and cares. Perhaps it hurts him that he cannot help you. I don't know if I should send this but another person sent this to me and it did help.

Yes, Peach here: I do have a low white count for over ten years and more and I do have Sjogren's Syndrome. The doctors where I live do not put this together even when I point it out to them. Quite unacceptable but this is the way it is in this neck of the woods. This is quite disturbing as I continue to fall apart and suffer. How can we, the patients help the doctors? (Without them taking offense)

I have all the symptoms of Sjogren's Disease and was therefore treated with a Saliva stimulant (Salagen or Evoxac). In fact it was the first 'condition' in the attack by my Immune System upon my organs/systems. Sjogren's is the result of NERVE DAMAGE to the system that produces moisture.

Almost all the the conditions I developed subsequently were the result of nerve damage (except anemia, really). I have profound Peripheral Neuropathy and severe Small Fiber neuropathy both of which developed AFTER I had the symptoms Sjogren's Syndrome.

Best wishes to you in your quest for relief. It is a long strange trip, for sure. There is a great forum for people with Sjogren's and many of them also have other conditions since they tend to appear in clusters. http://sjogrensworld.org/forums/index.php

Regards, ElaineD

@peach414144 I'm so sorry for all you are going through . If you can find a group therapy ,not medical, but those who all have same as you it is very helpful. When I was first diagnosed with fibromyalgia there was a group that met in the hospital ,not hospital personal so we talked about what we had extent to it and how some people used different things that helped them Just a suggestion but this did help me understand some things and some useful tools that I still use .

I am not sure who i'm replying too. But everyone is very kind on this site. Thank you. I'm half-blind and typing on a small phone. I have no car, no energy to do anything, two broken feet, herniated disc, last stage cirrhosis. Right now my energy is going toward 46 years of beautiful items I have collected to sell for money. My old dog betsy is sick can't take her to the vet, and for that matter, can't take myself to a doc, they know I'm a charity case. I worked for 30 yrs. I cant deal with being sick and broke at the same time. LOL. Thanks to everyone for all the kind words.