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cmtg
@cmtg

Posts: 16
Joined: Aug 20, 2016

Sjogrens

Posted by @cmtg, Aug 20, 2016

I have been diagnosed with this and I’m in pain most days and would like to have discussions.

REPLY

@graveltruck

Nothing smells right. Sometimes I think I smell electrical smoke, etc. Its scary.

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I can relate to that. It happens to me all the time too.

Does anyone have a low white cell count from Sjogren's Syndrome?

Welcome to Connect, @mnmboys13.
You may notice that I moved your message and combined it with this existing discussion as I thought it would be beneficial for you to connect with the many members who are discussing Sjogren’s syndrome.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

Here’s some informations from Mayo Clinic about Sjogren’s syndrome: https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/symptoms-causes/syc-20353216
Could you tell us a little more about yourself? Have you been diagnosed with Sjogrten’s syndrome?

Yes, and it seems as if I'm fighting every day just to stay alive. I have a lot of anger toward doctors, they should have cut the interferon dose in half, they didn't! Less medicine, less money for them, it is truly outrageous what they did to me. First, they give me hep c with unnecessary surgery in 1976, then they give me sjogren's.

@graveltruck

Nothing smells right. Sometimes I think I smell electrical smoke, etc. Its scary.

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Wow, so do I. My son thinks I'm crazy.

@cmtg

Does anyone have earaches from Sjogrens?

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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.

@sueleerock

Yes, and it seems as if I'm fighting every day just to stay alive. I have a lot of anger toward doctors, they should have cut the interferon dose in half, they didn't! Less medicine, less money for them, it is truly outrageous what they did to me. First, they give me hep c with unnecessary surgery in 1976, then they give me sjogren's.

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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!

Liked by lioness

@peach414144

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!

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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

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!

Jump to this post

@peach414144 🤣

@peach414144

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!

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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?!

@sueleerock

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.

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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.

Liked by lioness

@mnmboys13

Does anyone have a low white cell count from Sjogren's Syndrome?

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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

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.

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@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 .

@lioness

@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 .

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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.

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