Not Sjogrens
Posted , 12 users are following.
Thanks for allowing me to follow and read some of your situations. I really thought after reading what people were talking about here that the doctors were going to find out what was wrong with me. The dry nose for me is the worst nuisance. I have been dealing with the dry eyes since the 90's and have been thirsty all the time. I had not equated that to dry mouth until it became so bad that my tongue is like sandpaper, I get sores all the time etc you all know. I have been dealing with horrible pain throughout my body since 2006. I was so excited for someone to finally look for what is wrong. I am a veteran and the VA really did not want to find out. My blood work was negative. My symptoms I can deal with... its frustrating but most of all I had my hopes up and its kinda...
well I just want to cry...
not cause I;m hurting or my stomach kills me every day especially after I eat. I am just so disappointed. I don't understand... I get cut I don't heal but I'm not diabetic, my stomach hurts all the time, you cannot hug me, I have to be very careful of what cloths I ware and what chairs I sit in because it will feel like needles going into me body. I get electrical shocks going out my toes and know I am starting to shake. There are so many symptoms. I have finally been diagnosed with gastroparesis and I guess at least that is a start. Maybe I just have a lot of little things wrong.
Thank you for letting me vent I will soon be dis-enrolling from this site as I do not have Sjogren's I do pray for each of you I know that you all are going through your trials and tribulations. May God give you peace and strength to endure.
0 likes, 33 replies
Venita2018
Posted
I sure do appreciate all the input. I have been on restasis, have plugs but they began to irritate me sooooo bad I had them removed, I opted for comfort. The restasis seemed to help but then I would forget to use it until my eye lids were sticking to my eyes so know I just carry a bottle with me and flush my eyes with severe dry eye dropped off and on. It helps wash away the crud and lube. I do not get to see an opthamalagist only an eye doctor and they are never interested in repeating a eye test with the little papers I cannot remember the test name ya'll called it. I did however see a rheumatologist who wanted to place me on hydroxychloroquine and my doctor said this is pretty nasty medication. There are a lot of bad side effects. We are managing your arithitis you should think about this before you decide to take it. So I decided not to. Anyway, I was wondering does anyone have trouble with there nose. I have not read anyone stating so and my nose hurts so much. I get horrible sores and when I blow blood but I have to wet the inside of my nose before I can blow it. I got tried of going to the bathroom and putting water up my nose so I got some saline nose spray. For a few days it seemed to help. The sores healed, but now the sores are back and my nose is drier than ever. I have gone back to using water cause I am not sure about the saline. This makes bed rough because my nose dries out so fast. Anyone else have this issue and any advice. I do not get to go and see my doctor until January. When I tried to make an appt. I was told we just saw you, you have an appt. In Jan. are you Ok? I tell I am because i do not want to seem pushy. Oh, well here's hoping for some over-the-counter advice 😎😁.
Venita2018
Posted
Hi dry guy, lily, margret everyone who has been here chatting about SS and getting diagnosed. I have been seeing a rheumatologist and she believes I do not have SS because no blood marker. She believes my dry eye and mouth is medicine related. I told her how this began in the 90's and the medicine was not given to me until 2005. She is not backing down because I was diagnosed with bi-polar disease and all anyone heard is mental. I have no voice.
I am not mental, never have been. I have been suicidal... of myself not of a theater full of people. I am not psychotic. I have a chemical imbalance which is corrected through medicine. I should not be treated as if I am no one.
She did however order a cat scan of my neck to look at my glands and said they were normal. I have a nodule on my thyroid. She feels that I need to have a person with me on visits to verify dates. Then she also prescribed a medication to stimulate moisture in my mouth, nose and eyes. I am not sure I have SS but I know my symptoms are not medicine related because I had them before the medication however the medication could be making things worse.
dryguy Venita2018
Posted
What "medication" are you/were you on? Yes some drugs can cause dryness. Do you have any other symptoms at all?
I think you may need to find a better doctor - they seem outdated and dogmatic.
As I have posted elsewhere in the thread there is NO 100% reliable diagnostic for sojgrens and large umbers 90% men and 50% women have NO blood markers !
The comment below is also incorrect there is no such thing as primary or secondary Sjogrens - this is an outdated and denigrated term to describe someone who has just Sjogrens or two or more auto immune diseases plus Sjogrens - neither are secondary to the other but each is a disease in its own right. AI cross a spectrum of symptoms and multiple AI often go together.
I note you mention a nodule on the thyroid - have you been tested for hypothyroidism as this can cause sicca symptoms?
Sadly most medics blame everything on "mental" issues to hide their ignorance of medicine ..It is VERY COMMON as is the use of the term "ideopathic - sounds grand actually means " I haven't got a clue what is causing your symptoms!"
shaq26875 dryguy
Posted
My ECG shows IRBB (incomplete right branch block?) I was told was idiopathic as everything else is fine.
Venita2018 dryguy
Posted
My symptoms are widespread pain - Fibromyalgia ruled out. Widespread joint pain. My knees are bad and hurt all the time the doctors say I have arthritis. Orthopedics says I need new knees. My eyes began to become light sensitive in 1985 and the eye dryness began sometime in the late 80's to early 90's. My dry mouth began about the same time. I was not diagnosed as bi-polar until 2003. My dry nose began around 2014 maybe 2015 cannot pinpoint that because I'm always measurable. In Oct. 2017 I had acute pancreatitis resulted in gall bladder removal. In Jan 2018 I was diagnosed with gastroparesis. I vomit all the time since the 90's acid is a problem. My medicine
Topamax, lamictal. Gabapentin not began until 2005/2006 this is not the cause of my dry eyes maybe nose but not eyes or mouth. I also take pantoproxole, b12 injection, d3 2000, docusate, cinnamon, turmeric, zinc.
I do not heal. I am not diabetic, nor is my thyroid levels off. My chemical make up is different from the norm. Benadryl does not make me sleepy, ambien does not knock me out.
I swell a lot, I bloat, I burn and yes fart to excess. I have a laundry list of issues and doctors cannot find what's wrong, but the second the find out I'm bi-polar it's all mental. There is nothing wrong with me I make myself miserable.
So there it is
dryguy Venita2018
Posted
your symptoms are all possible with Sjogrens, pancreatitis is not unheard of and joint pain and a form of rheumatoid arthritis very common ... indeed it was 1 of the 4 symptoms described by Sjogren a 100 years ago. Depression is also common as the inflammatory processes also affect the brain but so called bipolar isn't that I know of. Gabap causes dryness of eyes nose and mouth and iit is one of its most common side effects. GERD is common in SS . I have it - as is eosinophilic oesophagitis. Gut issues sound like IBS which is linked to many auto immune diseases as a possible - the gut biome affects the immune response also it produces serotonin and many with IBS issues get depression and lethargy due to lack of serotonin ... more is made in the gut by bacteria than in the brain by the neurons .. Most doctors will not know any of what I have posted in this thread sadly but it is all true ... I have sero -ve SS and a PhD in medical science and have researched the disease for 5 years now and my rheum and opth consults both acknowledge I know more about SS than them ... Keep lookig for a better medic BUT als look at trying to rebalance your gut biome by dietary changes herbal abx .. a gut biome test by a good lab would be a start point. Genova are one of the best
Guest Venita2018
Posted
You could have secondary sjogren's. Quite a few diseases are complicated by secondary sjogren's. I would see a rheumatologist if you have not already. I swear mine just took one look at me and knew exactly what I had. She was so excited and she was right. Not that you can just look at somone and know they have sjogren's, but she did. Love my rheumatologist! Best of luck to you.