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Old 03-29-2009, 11:25 AM   #1
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Please- I need your help

I am a 34 yr old female, 2 yrs ago dx with "gerd". 9 months back I started to get odd pains behind my eye balls, like pressure pains. Never thought too much about it. About 2 months after I started to get quick burning pains in random toes, bottom of foot and fingers. I also got stabbing pains in these locations, like deep pulsating pains--random places, it would hit a toe, then hrs later my ankle, then the next day my right pointer finger. The pains would last seconds to hours. That same week I started to get EXTREME joint cracking, to the point I would crack 15 times in 10 minutes. About 2 months later I started to get muscle twitching all over my body-thousands per day. Finally, random points in my right hand would go numb on and off. Also I get tingling in my legs on and off. I also conitnued to get shooting pains, even in my teeth sometimes.

I had an MRI of head and spine, LOADS of blood (over 40 pges worth), EMG, etc..no MS, Lyme, thyroid, vitamin def, etc-No fibro (no tender points)

Those pains etc have reduced greatly but I still get them on and off. Now my concern is I have had upper quad pain (an inch below left breast) and mid burning for over a month. My lipase is elevated slightly and my ca 19. My dad died of pancreatic cancer so I am TERRIFIED I have cancer. My dr said inflammation of the pancreas in general can cause a rise in the ca 19. I had a CT, ab US, and EUS--and nothing showed off with my pancreas. I am scared a tumor is being missed.

However, I am now thinking maybe this all ties into all the other odd things that came about as I have no explanation still for all the other stuff.

I did read that Sjogrens can cause pains, numbness and even inflammation of the pancreas.

I had an ana, anti smith, sed rate tests when all this started a long time ago-but all clear.

Does Sjogrens present with these symptoms? What are the best diagnostic tests? Does it always show in labs?

Thank you so much

 
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Old 04-02-2009, 10:36 PM   #2
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Re: Please- I need your help

I share a lot of your symptoms but not the intensity of them. Except for my dry mouth, which welds shut only at night, I have beaten most of these problems. I suspect that your magnesium is depleted along with your hydrochloric acid and that you do not get enough sunlight. If I am right you need to be careful how you tackle these problems. It took me decades to figure out how.

 
Old 04-02-2009, 10:46 PM   #3
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Re: Please- I need your help

Thanks for your feedback... I have no diagnosis as of yet. I am thinking my current pancreas issue is related to all the other odd symptoms that I have had. What other symptoms do you have and how were you diagnosed? I don't feel dryness - maybe my eyes ( itch often and are red) but that is it

 
Old 04-03-2009, 08:11 PM   #4
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Re: Please- I need your help

I hope you don't misunderstand me. I'm in agreement with you. Your pancreas is the central issue. Magnesium deficiency causes vasodilitation and hyperirritability of the nervous system, resembling in some ways, the tetany due to calcium deficiency. This seems to be what your describing, in pressure behind the eyeballs and other pressure pains in the extremities, which I have shared. I'm wondering if you know that magnesium is necessary for over 300 enzymes. If your pancreas (the major producer of enzymes) has to work around a shortage of this most important mineral it will enlarge (hypertrophy) like an overworked heart or overworked liver (hepatomegaly) or a greatly increased number of white cells (leukemia) none having the enzymes needed to do their job. Hypertrophy and inflammation are linked and chronic inflammation is generally linked to cancer.
My mother has had pancreatitis nearly all her life and she will be 93 this May. I have had irritable bowel disease all my life but did not know it and I will be a senior citizen this May. Neither of us has ever had diagnosable cancer. My half-sister had her cancerous thyroid removed last year. There has never been enough lipase in my pancreatic output, but now at my age this is normal. If you are born with something like IBD it will escape you that this is not normal and the medical community will not tell you. Similarly I thought my scheroderma and Raynaud's disease were normal. My temperature is slightly subnormal (35->36ºC). I am borderline anemic but I run 3 miles (broken up) every second day. Males in my family and relatives are extremely prone to heart attacks. I have become susceptable to cardiac arrythmias in my old age especially when I do not use calcium ascorbate (½ a dimeful) after every meal or I do not have my daily "millet bomb", a term my brother-in-law uses to describe a cake made from 50% millet and 50% buckwheat. Boiled carrot pulp (source of hydrated silica) provides the fluid to make a paste of this 50/50 mixture. I make two days worth of this mix and keep it in the fridge and microwave a cup at a time for 9 minutes. This millet bomb could be a whole new thread but for now I predict its bioform magnesium is what your pancreas is begging for. My mother was a fanatic for milk of magnesia all her life, for her gerd. It kept cancer at bay but it ruined her stomach by depleting her hyrochloric acid and making her susceptible to helicobacter. 3/4 of her stomach have been removed. I used to use dolomite which may have been worse. When my doctor tried to push beta blockers for me, I thought of dear old mom, and ran. Vitamin U in cabbage juice worked just fine. This again is a whole new thread.
A maternal great-aunt died of lung cancer from, it seems, second-hand smoke. Two of my mother's sisters died of arthritis and my sister has a defective heart valve (rheumatic fever). I have a borderline osteoporosis which was far worse in the past. Cold causes me to pull muscles and locks up my right leg at the groin. Their is a lot of cracking there if I don't stop motionless. The scapula area has the same problem. I'm sorry I can't be more descriptive. There is only so many hours in the day to study these things.
If your lipase levels are normal, daily required bioform magnesium can be easily obtained from 1.21 cups of almonds. Otherwise you will have pencil-thin stools. 180 ml of inorganic magnesium chloride at sea-water concentrations (1 or 2%) broken up 3 time in a day (60 ml) on an empty stomach worked for me, also. Magnesium chloride will not deplete your pathogen-destroying hydrochloric acid.
You may have looked into apoptosis and the minerals it requires, selenium, zinc, and iodine. The first two are taken care of in the millet bomb. Iodine info I can send you if you want.
I hypothesize running or any aerobic exercise may enhance the killing of tumor cells (metastses) arrested in the capillaries or lymph nodes. They are certainly victims of mechanical turbulence in the circulation. This and attacks by host defences kill the vast majority of tumor cells, according to Dr. Lance Liotta (Scientific American, ISSN 0036-8733, Cancer Cell Invasion and Metastasis, Volume 226, Number 2, Feb. 1992, Page 54). Does it not seem that this hypothesis would give rise to news articles like ([url]http://www.cbc.ca/health/story/2008/10/30/exercise-breast-cancer.html[/url]). Running to create hyperthermia and simultaneously loading the blood with B, C, E and garlic would be another synergism scenario. I saw university people in Cuba doing this. I saw runners dressed up like it was Canadian winter.

 
Old 04-15-2009, 11:42 AM   #5
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Smile Re: Please- I need your help

Hello SS cohort. I too have SS and have experienced many of the same neurological symptoms you are experiencing. Shooting intermittent and transient pains, including numbness and burning sensations are not uncommon. I have tested positive for brain lesions on MRIs. They are known as UBOs-unidentified bright objects. Because of this I have been dubbed as having CNS (Central Nervous System) involved Sjogrens. It is unclear whether my weird neuro symptoms, which also include: urinary urgency/occasional incontinence, "holes" in my vision, optic and cerebral migraines, foot dragging, vasculitis (inflamation of the blood vessels--lesions may appear as small or large purple spots/bruises, but I have not injured myself where they appear), debilitating fatigue, acute and unexplained nausea, twitchings anywhere, numbness/tingling in fingers, toes, cheeks and other areas, etc. It is also possible that vasculitis could be at least partially, if not completely responsible for these weird symptoms. Blood vessels need to carry oxygen via blood to our organs and cells. If the flow of blood is impeded due to constriction, inflammation or vessel damage, the body may react as though the brain is doing something weird neurologically. In other words, the effect may have a very mechanical cause.
A bit of history for your information...
Originally I was diagnosed with Multiple Sclerosis because of the presence of UBOs on my MRIs and I have all the M.S. symptoms and signs. The M.S. neurologist refuted this diagnosis because my lesions are static--they don't move around like they do in M.S. I always tested negative for blood tests, inc luding: ANA, ENA, and Sed-Rate, and the SS markers, too. I had unexplained parotid and salivary gland enlargement that went on for years, the cause of which was undetermined because my sialogram was negative. I've since learned that test is not very definitive. I also "made good spit" according to my doctor, when she manipulated my salivary gland manually. I didn't have the sicca symptoms or any dry mouth, but I did often feel like I had swellings in my throat. Looking back, I guess that was due to dry mouth but I didn't recognize it at the time. Finally, I had a lip biopsy done and it was profoundly positive. The white cell infiltration was well and long established. This finally gave me a diagnosis, coming at least 10 years after I first noticed weird symptoms that I think actually began in my very late teen years (but with long breaks in between flares).
You are worried about pancreatic cancer. I am a health care worker in the field of cancer--but not a doctor. Tumour markers are not good indicators of diagnosing cancer. In fact, they are horribly unreliable, more often than not giving incorrect and often frightening information to a patient who's relying upon them for a cancer diagnosis. Tumour markers are good to monitor the course of chemotherapy, which is what they are used for. So, don't place too much value on any CA blood tests. It is true that SS can affect any organ that produces fluid, and since I have difficulty naming one that doesn't, it truly is a systemic disease frequently and could affect the functioning of your pancreas. Consequently, you may develop pancreatitis but I would suspect your doctor would readily diagnose this, as it renders the patient awfully sick. You would be unable to eat--vomiting continuously. As for developing pancreatic cancer, there are certain prognostic factors that seem associated with its development. It is more prevalent among patients who: smoke, have an above average consumption of alcohol, are overweight and generally practice a less-than-healthy lifestyle including poor nutrition and exercise habits. Because these prognostic factors also tend to appear in patients with other serious diseases such as heart disease and type 2 diabetes, of course it is always recommended to amend one's life to avoid these behaviours.
I am unaware of a higher-than-average incidence of any form of G.I. (gastrointestinal) cancer among SS patients (pancreatic is considered "G.I.") but of course we are more susceptible to MALT Lymphoma (Mucosa Associated Lymphoid Tissue B-cell Lymphoma). Other than practicing an over-all healthy lifestyle, my colleague who specializes in the treatment of Lymphoma has told me I can not do anything to circumvent developing Lymphoma--it will strike whom, where and when it chooses. But, since only about 10 percent of SS patients develop this, I've decided to have faith that I will be among the 90 percent who don't. (I don't always wish to be a maverick!)
Despite all the nastiness associated with SS, we can not live our lives in fear. There is no life in that. I currently am on an urgent waiting list because I'm waiting for a CT scan to see if I've developed cerebral vasculitis. Inflamed blood vessels anywhere aren't good, but they can be quite life-threatening when they are in the brain. Still, I'm remaining calm, forcing myself to do so, because stress causes negative physiological changes by releasing too much cortisol, a natural steroid that causes all kinds of negative consequences. Plus, I say my little mantra reminding myself that there are certain things I can't control, and I must have faith that "things will work out". If I can offer any such words of hope to you, please know that I am thinking of you and wishing you well. This is a nasty, very unfair disease. I am sorry it has found you. Take good care of yourself and best wishes.

 
Old 04-15-2009, 08:22 PM   #6
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Re: Please- I need your help

Wow thanks so much for sharing.

Last weekend I went to breakfast, it was warm out and then when I got home noticed a web type rash on my thigh. I sent a pix to my dr and he sent me to the rheum. Its called livedo reticularous--she said its most commonly associated with a clotting issue or associated to lupus. So, she ran some tests and I should have them back this week. If I had lupus it would sure make sense given my symptoms. However, I was tested back when all of this started and was fine.

My friend had the lip biopsy as well, so perhaps I should add that to the list. I do not think it is just an odd random thing that my pancreas became inflammed without reason....I cant help think its all related some how. My pancreas has been feeling much better the past week, however, now my joint pains are acting up again-go figure.

I have not been dxd with anything at this point but do want answers.

What do your traveling pains feel like? Now I am starting to get odd pains in my muscles, like my joints the pains are fleeting and quick. Almost feels like someone is pinching the muscle. Hard to explain.

Do you also get extreme joint cracking?

Thanks again for sharing, I really appreciate it!

 
Old 04-15-2009, 09:26 PM   #7
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Re: Please- I need your help

Hi again:
I'm sorry to hear you've not yet been given a diagnosis. Not knowing what is wrong is far worse I feel than knowing even a dreaded diagnosis. I hope your condition is quickly and correctly identified. I wouldn't be at all surprised to learn that any condition of which you suffer has involved your pancreas. Sjogren's is only one of many autoimmune diseases which affects the body systemically, and it is even made more difficult to diagnose because it is often the secondary disease present. I have primary SS, but you may have secondary, perhaps to something like lupus. Then again, hopefully you may not have SS. I'll cross my fingers for you. It is truly frustrating that most autoimmune diseases have no definitive test to diagnose them. Usually diagnosis of these types of diseases is made via adding up the symptoms and acknowledging a certain "score" of these plus signs the patient exhibits. Sometimes testing can confirm suspicions, but without the supporting signs/symptoms, diagnosis is very difficult to make indeed. Patients may be almost oblivious to some of these symptoms. Looking back, what I thought were "throat swellings" probably was dry mouth, but I felt it further down than is typical. I only recently developed dry eyes and oral cavity area dryness--these were definitely the last symptoms to manifest in me, but typically the first noticeable symptoms in other SS patients. Go figure!
As for the pains I feel, fortunately I don't suffer frequent pains anywhere now. I am a strong advocate of exercise, and no matter how lousy I feel, I try to do some form of it daily. Even today, I walked and rode a stationery cycle for a bit, despite the fact my head feels like it will either catch fire and/or explode--not sure which first. I believe my insistence to remain as active as possible has helped me reduce painful joints and muscles, although I admit there are days when I feel like I've been run over by a truck! Chameleon disease that SS is, my pains travel and migrate as they please. I have experienced burning sensations in my fingers and toes occasionally, and extreme soreness pretty much everywhere from time to time. I try to stretch and/or at least walk, to ease the soreness. I'm an avid cyclist and I want to remain strong during bad spells so I can resume my passion when the bad spells relents. At 46 years old, I'm not ready to park my butt and wait for the end, as it were! I'm far too stubborn for that.
I would question why Lupus was ruled out for you. Not that I'm trying to frighten you--far be it. No one wants that disease, and I hope that you are correct in your belief you don't have it.
If you have a prevalence towards pancreatitis, that bears further investigation. Are you diabetic? You don't have to be, but pancreatitis is not a common condition, and I wonder how you developed it. You have my sympathy, as I understand that makes a person horribly ill.
If you think SS might be at least part of your condition, a lip biopsy might be worth pursuing. Is your rheumatologist investigating other diseases for you? You may need to be your own advocate in that regard. Doctors frequently take a "wait and see if it will all just go away" approach when any condition is a difficult diagnosis. I've had lots of experience with that!
Take good care of yourself and please know I wish you all the best.

 
Old 04-16-2009, 09:06 PM   #8
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Re: Please- I need your help

Thanks so much, you have been so very informative.

I too work out a lot, in fact I work out 6 days a week--I love to go to the gym, it helps me stay sane. One thing I have noticed is I go through waves of being REALLY tired. Not sure if that is related but I assume so.

Its interesting, a month after most of these pains started I developed horizontal ridges (indents and bumps) all over my finger nails, and my toe nails has lines. I read this could be linked to a systemetic disease....

I do not have diabetes, which is good. Today my pancreas has had some pains but not a ton.

Do you or have you gotten the extreme joint cracking?

The traveling pains come and go for me. I have noticed that I get flares of different things, one week it will be a TON of twitching, the following pains, the following week feeling okay, then after etc. etc.. There was a period of 2 months when all my symptoms were hitting at once, and it was a period that I was under extreme stress (had just lost my dad to pancreatic cancer, and had just moved)

I just hope to get answeres---whatever it is so I can stop guessing. Should get my labs back this week. Its interesting, I did read that GERD is often one of the first symptoms of SS, I have had GERD for over 2 yrs which has been very hard for me to control.

 
Old 04-17-2009, 05:33 PM   #9
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Cool Re: Please- I need your help

Quote:
Originally Posted by k2626 View Post
Thanks so much, you have been so very informative.

I too work out a lot, in fact I work out 6 days a week--I love to go to the gym, it helps me stay sane. One thing I have noticed is I go through waves of being REALLY tired. Not sure if that is related but I assume so.

Its interesting, a month after most of these pains started I developed horizontal ridges (indents and bumps) all over my finger nails, and my toe nails has lines. I read this could be linked to a systemetic disease....

I do not have diabetes, which is good. Today my pancreas has had some pains but not a ton.

Do you or have you gotten the extreme joint cracking?

The traveling pains come and go for me. I have noticed that I get flares of different things, one week it will be a TON of twitching, the following pains, the following week feeling okay, then after etc. etc.. There was a period of 2 months when all my symptoms were hitting at once, and it was a period that I was under extreme stress (had just lost my dad to pancreatic cancer, and had just moved)

I just hope to get answeres---whatever it is so I can stop guessing. Should get my labs back this week. Its interesting, I did read that GERD is often one of the first symptoms of SS, I have had GERD for over 2 yrs which has been very hard for me to control.
Hi again:
I too hope you get all this sorted out soon. I don't get the joint cracking you describe, fortunately. But, like you my symptoms seem to "change with the wind" as it were. I think this is one reason why SS is so hard to diagnose, as are many auto-immune diseases--the symptoms and signs shift depending on what area of the body is being attacked at any given moment. When the nerves are the target, the results are across the map. Sometimes my symptoms include acute, overwhelming nausea (hard to work under that condition--excuse me a second while I barf, will you? now, where were we...?), exhaustion (again, transient--other days I cycle over 50 kilometers then come home and cut the grass with a manual push mower), neurological weirdness as I've previously described, etc. You name it--I feel/get it, but "it" is constantly shifting. Makes life interesting! (I actually wish I could get bored sometimes...) As I guess you've noticed from this, I have learned to approach all this with a sense of humour. I figure all this crap will either make one laugh or cry, and since apparently I don't produce much in the way of tears, rather than do further damage I choose to laugh about it. I guess there is a third option: go insane. But, insane behaviour tends to be so predictable, and I at least enjoy being a maverick!
You asked about twitching. Yes, that is frequent with me. My eyelids do a twitch dance regularly, and I'm often bothered by "restless leg syndrome" or the night "jerkies". Good thing I'm a single gal because I expect I'd scare off any potential lover doing those types of bedroom calisthenics! There definitely is a correlation between SS and gastro-intestinal disturbance. A couple of years ago I developed a gastric ulcer. They are usually caused by H-Pylori bacteria, and can be cured completed by a regime of two anti-microbial drugs. However, my breath test determined no H-pylori was present in my case, so my ulcer was a product of straight erosion. This can happen when one doesn't produce enough gastric fluid. The good news is that a recent barium swallow x-ray showed the ulcer has healed, although my "guts are still very rough in there"... highly technical report, that! I wouldn't be surprised if reflux etc. are also more common in SS patients.
I'm curious to know why you believed your pancreas was inflamed. May I ask about that? Did you have some blood tests showing elevated enzymes, or did an ultrasound scan reveal enlargement, etc? The reason I ask is this is not an organ that typically becomes infected or inflamed, although this can happen, of course.
As for ridging finger nails, I don't have that but I've read that certain vitamin/mineral deficiencies can cause that. I don't know if there is any validity to that claim--I read it in a naturopathic healing book. As I work in main stream health care, I'm always reticent to believe what I read outside of my sphere. But, I also acknowledge that there is much about the human body that main street science is still very ignorant of, and so I try to approach all forms of therapy with an open mind.
I hope your test results bear out that you are being bothered by something easily treated and cured, and you will be on your way to excellent health in no time flat. Take very good care of yourself and know my best wishes are being sent to you

 
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