Share your blood type and family history of Sjogren's. Let's share and solve the mystery of this syndrome. My family is O pos and father and mother have Sjogren's as well.
View 45 Replies41 year old female diagnosed with HBP earlier this year. family history of it, but no problems for me until now. non-smoker, weight normal, exercises on 4-6 times/week and eats a low sodium diet.
driving me crazy that I have this condition and wish like hell I could do something to lower it.
was already taking a beta blocker for an abnormal heart beat, had high blood pressure earlier this year. doctor doubled dosage of beta blocker. BP was the same when I returned for a 3 month follow up appt. last week.
she put me on diuretic, started it a few days ago and I hate taking it, the constant peeing is killing me.
anyone have a similar situation? HBP with only a family history and no other risk factors? I don't want to be on the diuretic for the rest of the life. i'm fine with the beta blocker b/c of irregular heart beat, but I don't like being on other meds.
I cried when my BP didn't go down. my doctor said it was a matter of my age and genetics. sometimes this happens.
anyone, anyone? looking for a similar story or someone to tell me things will be ok. I have a fear that my BP will never be normal again and i'm trying NOT to stress about it.
If someone in your family has raynaud's should I be tested.
View 5 RepliesHas anyone gotten them before? I'm preg with #6 and I think I have signs of them. I'm concerned because on my mother's side the women have them severely (to the point my sister almost lost a leg in pregnancy). I'm high risk and on adjusted bed rest so it's not from standing too long and I'm only 12w so it's not from pressure.
View 3 RepliesI'm 34 years old. Family history of breast cancer.
My first benign breast (right) tumor was surgically removed when I was 15 years old. It was a mass that grew in size with time but, thankfully, benign.
In 2013 I had a lump in my left breast (mammo and ultrasound showed lump w/ it's own blood supply and jagged edges) and when I was having my biopsy done the Dr. saw there was puss. Biopsy returned normal and diagnosis was mastitis even though I wasn't breast feeding. After weeks and weeks of strong antibiotics, the mass was surgically removed.
In 2014 I had another lump in my right breast(mammo and ultrasound showed lump w/ it's own blood supply and jagged edges). During the biopsy my Dr. was able to break the mass apart. No surgery was needed after this one. No antibiotics. And again, biopsy was normal.
Now it's 2015 and about 2 weeks ago I woke up with pain on my right breast. It was very swollen, red around the areola, felt very dense/heavy, and was very warm. A few days later, symptoms are the same but now I had green discharge coming out of the nipple. I didn't squeeze to get the discharge out. I noticed it on my bra. Some days there was more discharge than other days, but always green. I think I might have seen a reddish brown color at one point but wasn't too sure as it was faded into the padding I was putting in my bra. Went to the Dr. and was seen by a nurse practitioner and she felt a lump (though to me, it didn't feel like a lump, more of just a very dense/thick area) and we noticed that my nipple was inverted and it wasn't before. I was finally scheduled for a mammo & ultrasound a week and half after the symptoms first started and by then, the swelling had gone down, the pain wasn't constant - more of a shooting sharp pain throughout my breast and nipple area, but the discharge continued. The nipple is still slightly inverted, specially at the bottom. Mammo and ultrasound came back fine except Dr noticed that there is debris in my milk ducts. Oh and no fever at any time, no feeling sick, and my breast is very itchy... nipple area is flaky... maybe from scratching?? Should I get a 2nd opinion or does this sound like something I should concerned about? I've had so many issues with my breast already I just get really scared that there is something bad going on. I'm sure this is benign but worried at the same time.
6 weeks ago I went into hospital and was told I had a cyst on my left ovary , which was about 4cm. I have recently been back to my doctors and had some blood tests done and waiting for a repeat scan. My ca125 has come back high, and I have got to go and see a gynecologist a week monday. I am 44 years old, I was sterilised 2 years ago. I am so worried. I lost both my parents to cancer.
I have pain in my left side all of the time, could this be because of the cyst?
Has anyone developed high blood pressure and atrial fibrillation after taking hydroxychloroquine?
View 6 RepliesI have an indention in my left breast,right above my nipple. it's like a hole. I have family history on my mother's side of breast cancer. Besides cancer what else could it be?
View 2 RepliesHey, so breast cancer runs in my family and so I check myself regularly. Lately tho I keep getting an ache in my left breast and sometimes the right one. I have had children so they have changed a little but when I feel them I keep feeling lumps and can't tell if they are normal or not.. Sometimes it is tender to press.. I have noticed also my nipples go a little crusty almost (I am so sorry for that info :-/).. I know I should see a doc but I suffer anxiety badly to the point I can barely leave the house alone and my husband is about to start a new job so he won't be able to come with me.. I am so scared!! I don't want to tell any friends incase it's nothing but then I'm freaking out about going alone esp with my children .
View 3 RepliesI have Primary Sjogren's Syndrome but was born Hypermobile. It was only after my present Rheumatologist diagnosed that I have scoliosis that I started to research. I found the Beighton Scale and the Brighton criteria which I match completely. I explained my research to my consultant and she agrees. However while she and another consultant both agree I do have POTS so far I don't have an appointment to see anyone to help me. I have had ECGS and a bubble ECG but they have been taken while lying down. Now the POTS I really noticed post the birth of my last son 29 years ago is getting much worse, can anyone advise me as it has taken decades to get this far, I don't feel time is on my side
View 4 RepliesHaving been officially diagnosed with Sjogren's syndrome about a year ago, I think back on ALL the diagnoses I have had related to it: "nutcracker esophagus and severe GERD", "esophageal spasms", polyarthritis, fibrotic lymph nodes, fibromyalgia, Prinzmetal angina, benign parotid tumor excision (trabecular adenoma), dry skin, dry mucous membranes, etc. and now know they are all part of the same syndrome, which has been steadily worsening and becoming more malignant (and I am only sixty). There are many other more serious difficulties, but now I'm wondering if I, too, will get non-Hodgkin's lymphoma, since that is what some people progress into. It is NOT that this frightens me at all--but now there is something of which to be aware (and I'm not certain my M.D. knows of this). I also have glaucoma and cataracts--so I really have to protect my eyes (and I have had a vitreous bleed into one of them).
My ophthalmologist (a retinologist) placed upper and lower tear duct plugs in my eyes--which has helped, but I still have to use lubrication. Since I am a writer and use the computer extensively, I find it quite hard on the dry eyes. I am extremely careful to drink lots of water and often mix pure fruit juice with my water to avoid calories (sugar) and to make the water more interesting. This does, however, exacerbate my stress incontinence gained after fracturing my back--for which I stay close to a toilet (but my writing is done at home.)
My dentist told me today that I need upper dentures due to Sjogren's Syndrome. Has anyone else had to get dentures and how did you deal with it?
View 1 RepliesAnybody tried it? I've just started. I'd been reading up on it on-line for some time. It's supposed to be the bee's knees for the whole sicca syndrome, and dry eyes in particular. As I was due to spend a few days in London last week, I debated getting some, but decided it was too expensive.
Then fate took a hand. As I haven't had dry eyes for months now, I didn't take my eye drops with me. That's the trouble with remissions - you forget you've got the wretched condition and get cocky! First night in the place where I stay it was a bit stuffy, so I turned on the air-conditioning for half an hour. One of those individual ones that blows air out fiercely however low you set it. I sat up in bed, facing it, watching the TV for just half an hour before going to sleep, but that was enough. I managed to get replacement eye drops the next morning, but now I'm in big trouble. Decided to invest in the sea buckthorn oil anyway, and have now been taking it for a week.
They say you're supposed to take four capsules a day for the first two weeks then cut down to two, but I'm being careful. Took one a day the first week, will start on two tomorrow and build up to four by the end of the month. I once had a terrifying experience on a low starter dose of Siberian ginseng. Just because something is "natural" doesn't mean it won't harm you!
Sea buckthorn is also said to be good for RA. The main ingredient is Omega 7, btw, but it also has Omega 3, 6 and 9 - though a different type of Omega 3 than fish oil. I'll be interested to see how that works out. I'm actually having an RA flare-up at the moment, but it seems to have peaked since I started my usual homeopathic treatment a few weeks ago. As I'm taking the oil alongside the homeopathic remedies, that will muddy the waters, of course. But I'll stay on the homeopathy for six months because it always works.
I hear you have to wait three months for Omega 7 to kick in, so I may be in for the long haul with the dry eyes. My right eye is already starting to bleed from a crack at the outer corner. We're having high winds here at the moment, which isn't helping things, particularly as my hips and knees have now improved enough to stand a 45-minute walk most days. I finally caved in today, and put on my wrap-around industrial goggles (provided by an optician in the UK). But I feel a right berk wearing them when walking around city streets - especially as it's not considered rude to stare in this country!
My mother has been diagnosed with Sjogren's syndrome. Her main symptom is dry mouth and someone recommended us product called Biotene. Is Biotene really enough to contain this syndrome?
View 1 RepliesI get bladder infections quite often. For the last year I've had 6. I get very sick with them. I run a high fever and am in alot of pain. They last for a couple of weeks. I have to take antibiotics for them and worry about having to take so many. Does anyone else experience this problem or have any suggestions?
View 4 RepliesI have had dry eyes for about 2 year now (I also had lasik in 2005). Within the last 4 months my have have gotten really dry. I have all 4 tear ducts plugged and I am on Restasis. I also use sclera lenses (more for vision but also helps the dry eye). My eye dr said he thinks I may have Sjogren's even though I have never has a Schirmer's test (I am not sure how accurate that would be since i have had lasik anyway). tested positive for ANA 1:80 titer with homogeneous pattern but negative for RF and SSa and SSb. Should I pursue this further? Dry eyes are the only symptom I have.
View 40 RepliesI was wondering whether depression is actually a symptom of this illness. I understand that it is natural to feel depressed when receiving a diagnosis of chronic illness, but my current mental state feels like something much more insidious and severe. I have never felt depressed in this way before, even when I got a diagnosis of another painful AI condition 8 years ago. I also know that mental stress can negatively impact symptoms so it is vital to 'feel better' quickly in order not aggravate the condition. I am not sure how to start to do this and wonder whether systemically something is going on that is affecting my brain chemistry to feel this bad.
View 11 RepliesI have had chronic bronchitis/sinusitis for years.
Had sinus surgery due to level of sinus issues.
I don't get a cold, I get bronchitis - pneumonia/pleurisy, etc.
I have cold sores on my lips often.
In june I was diagnosed with an eye ulcer - I have never had any problems with my eyes. Ophthamalogist did test and said my tear ducts have stopped working.
I have blurred vision and my eye sight is deteriorating.
Exhausted
Joint paint
Tingling toes and fingers
Migraines for years
CT of chest shows enlarged lymph node in lower right pre tracheal region 2.5x1.4x0.8 and they want to do another ct in march
sore throat and coughing they just prescribed prilosec for acid reflux and although I've never had heart burn or anything like it, it's working....
I have testing borderline positive for lupus one time and negative the next. 1:80 Homogeneous Pattern
RA factor was -9.0
Igg subclass 3 LOW at 21 everything else normal
No lyme disease
White blood count tends to be a little high
Seg tends to be at about 80%
Lymph tends to be low
SED rate was elevated
CPK was normal
First appt with rheumatologist on the 24 of Feb. any thoughts on what this could be? Sjogren's seems close but I have no dry mouth Would really appreciate it.
My daughter was diagnosed with Sjogren's Disease I was just wondering if there is anyone that has this Disease, and to inform me how they are living and coping with pain and day to day living. She is only 20 years of age.
View 1 Repliesi have had sjogrens since I was 41 years old, I'm now 74 . I've been told there's nothing can be done for it, it's just as I've got older I ache more and get extremely tired,I do go out walking with my dog to get some exercise, have a sit down , then do a few jobs , then sit down and so forth , sjogrens is not life threatening, but it changes your life completely .but it's nice to keep in touch with people who has this horrible condition.
View 21 RepliesI have been in pain for about 8 years now. Whole body hurts, mainly back, traps and neck. Dry mouth and down there where it matters. I never feel good, cant remember when last I did. Often dizzy, always very tired, I can't exercise at all, used to be a personal trainer and now I can't even walk to the shop. I feel dead and hating every minute of it. Don't have a lot of faith left in doctors as they have been giving me quite the run around. Now, I am on a mission to sort all this out, went for blood test, twice and both times came back positive for Sjogren's, but the Rheumatologist still doesn't think I have it as I don't have dry eyes. Can I have it without dry eyes? I don't even want to ask her questions anymore, seems like you not supposed to ask doctors questions, just sit, listen, accept and feel like poo for the rest of your life. I also have 0.00 testosterone.
View 34 Replies