Well it's been a truly horrible winter for me but it could always be worse - no one has died and some parts of life are going well. I just need to shake off some cold/ sinus virus that has sent me into a horrible flare of full body tremors/ severe anxiety, sudden plummets in BP (from my normal borderline hypertensive 140/190 to resting/ sleeping lows of 77/45.
So tremors - I asked here and was told that some of you get tremors with SFN plus balance issues (ataxia) etc. But all my nerve conduction tests and other imaging plus reflex tests have been very good so my rheum says my Sjögren's is still only affecting my small nerve fibres. In which case I'm scared that these symptoms I list here could be vascular ie atherosclerosis or pulmonary hypertension. They keep excluding the lung stuff, are treating as viral asthma and general anxiety - the neurologist calls it "heightened health awareness" :o ::) and I've written to her saying I will not be spoken about like this in a clinical letter. She hasn't replied but even if my awful tremors turn out to be Parkinson's (her area of expertise apparently) is rather settle for this degenerating further without her input. I detest her!!
But I do accept that my high state of anxiety might come first and, once I've got a disability tribunal on Friday and a funding application off over the coming weeks over and done with then I guess I'll be clearer about where I'm whether I'm benefiting from Cellcept withdrawal or not. Meanwhile I took my last dose of 40mg Prednisone this morning so cold turkey tomorrow! And in case you think steroids may have caused my tremors - these started months ago and have been building up to the nightmare stuff of the past week - prior to starting steroid on Tuesday. The chest pain in my heart area has gone, dry cough much better. Peak flow up from 200 to 375, ventolin inhaler on the go. Could underlying asthma be the problem causing tremors? They start when I wake gasping with no breath and dry everything plus thick mucous paste in throat. And awful pulsatile Tinnitus!!!
But I would like to learn more from any of you who have suffered from awful all body tremors please!! Xx
I am going to panic with you going cold turkey off of 40 mgm of prednisone. That is extremely dangerous and could end you in ER or worse. It is mandatory to taper off prednisone slowly in order to avoid bad health issues. This sudden cold turkey can cause death in some circumstances.
Generally, depending on the length of time a person has been on the 40 mgm the decrease can be a small decrease every day such as 1 mgm to 5 mgm a day for a couple of weeks. There are various other ways. You need to talk to a doctor for help in tapering off this.
The problem arises because taking the prednisone causes the adrenal glands to become lazy and quit producing cortisol. Tapering off helps the gland to wake up slowly and start producing the cortisol again. Some docs think that dropping a large amount can kick start the adrenal glands but they are usually referring to dropping 5 mgm or so every so many weeks.
Stopping the 40 mgm can precipitate the asthma attack of all times. Hope you can address this situation. Irish
OK, I just read another post you had on this site and see that you had 5 mgm prednisone ordered for 5 days..........Now that can be stopped cold turkey. Docs will order the higher doses nfor 5 days and then cold turkey. If they order for more than 5 days the dose must be tapered. I feel so much better now as I was so concerned about you. Forgive me for getting wound up. Irish
Irish I am so touched that you were so wound up for me! But honest I'm not a numpty all the time as I maybe come over! I have had 40mg Prednisolone for 5 days - no more today. Like yourself I'm used to slow tapers from half the dose after weeks or months on this stuff. But apparently with asthma this is standard protocol - like a short sharp shock to knock it on the head.
I did it once or twice for big post gestational allergies many years ago and must say that it didn't suit me as well as longer tapers - but I've never done it for asthma. It was another example of Doctors focussing on what was sitting in front of them - a post gestational worn out mother of three with a huge bald patch on her crown and eczema plastered all over her body and face. For me and you we might have tested her full bloods and thyroid levels and done an antibody panel too. But I just got the steroids! My Hashimoto's was a chance finding five years on.
Indeed I'm very unsure I have asthma and my mine concern is that I have pulmonary hypertension. I have told them this and explained my immediate and wide family history of vascular dementia and heart attacks caused by atherosclerosis but they just smile back at me as of to say I'm being the worried well and just have a nasty virus and a head full of health related stuff I should leave to them.
I would love to trust my doctors in the way they need and expect us all to buy unfortunately experience has taught me that they often can't see the wood for the trees. My thinking is that Sjögren's and Scleroderma (I have ANA pattern pointing to Scleroderma) plus my genetic history make this the risk my Doctors should focus on. Pulmonary Hypertension builds up slowly but the resulting damage could happen fast. Same for atherosclerosis which killed my mum and is associated with pulsatile Tinnitus which I now have. If it's all the Cellcept and virus and anxiety about this coming tribunal then I have a week to wait now. I really don't want to have a pulmonary embolism or a stroke or heart attack while they scratch their heads and say "she's just got it all out of proportion"! And like Spike Milligan I'm left wired up to machines saying "I told you I was sick"!!!
If you have only been on the Prednisone for 5 days, then stopping cold turkey is fine. The rule of thumb, is any thing less then 7 days is fine to stop cold turkey, otherwise a taper is in order. Now, of course, there are some people that cannot handle even 5 days...but most won't have a problem. You should be fine.
Are they saying the tremors are "essential tremors"?? Have you read about beta-blockers to help with essential tremors? My main concern is that you say they are full body...so your WHOLE body is shaking?? Your chin quivers, thighs shake, shoulders tremor, etc? Hands and feet are most common for essential tremors...but I have read that in rare cases it can be all over.
I would demand another neurologist for sure. I have not liked that lady since you first started writing about her...seriously! Can you do the private pay for another consult...then if you like them, see them through the NHS regular system? Sorry, I don't know how NHS works too well.
I'm not surprised about the sinus crud...especially being on Cellcept for so long. Your immune system is weak...very weak after taking a drug like Cellcept. Have they put you on an antibiotic? It may not be viral...but in fact bacterial...and need antibiotics. Any green nasty sinus discharge? What about fever?
I have confirmed indicators of pulmonary hypertension...found on my heart echo. I also have SOB with ANY exertion or inclines (stairs, even slight hills or inclines). I do have asthma, confirmed by methocholine challenge test. You can get confirmation of your asthma or PH by getting this test or the echo of your heart...so you know which it is. If both are clear, then likely allergies.
I thought you had a cardiac workup not too long ago...did they do an echo? This would have shown signs of PH, if present. With your family history, you should have a full work up, if you haven't had one...to include an echo.
Quote from: anita on February 25, 2018, 06:42:53 PM
If you have only been on the Prednisone for 5 days, then stopping cold turkey is fine. The rule of thumb, is any thing less then 7 days is fine to stop cold turkey, otherwise a taper is in order. Now, of course, there are some people that cannot handle even 5 days...but most won't have a problem. You should be fine.
Are they saying the tremors are "essential tremors"?? Have you read about beta-blockers to help with essential tremors? My main concern is that you say they are full body...so your WHOLE body is shaking?? Your chin quivers, thighs shake, shoulders tremor, etc? Hands and feet are most common for essential tremors...but I have read that in rare cases it can be all over.
I would demand another neurologist for sure. I have not liked that lady since you first started writing about her...seriously! Can you do the private pay for another consult...then if you like them, see them through the NHS regular system? Sorry, I don't know how NHS works too well.
I'm not surprised about the sinus crud...especially being on Cellcept for so long. Your immune system is weak...very weak after taking a drug like Cellcept. Have they put you on an antibiotic? It may not be viral...but in fact bacterial...and need antibiotics. Any green nasty sinus discharge? What about fever?
I have confirmed indicators of pulmonary hypertension...found on my heart echo. I also have SOB with ANY exertion or inclines (stairs, even slight hills or inclines). I do have asthma, confirmed by methocholine challenge test. You can get confirmation of your asthma or PH by getting this test or the echo of your heart...so you know which it is. If both are clear, then likely allergies.
I thought you had a cardiac workup not too long ago...did they do an echo? This would have shown signs of PH, if present. With your family history, you should have a full work up, if you haven't had one...to include an echo.
Thanks so much Anita. The trembling affects every part of me including my vision, thighs, chest, organs etc. This is why I'm feeling so alarmed by it. And even if it's due to high anxiety now (and I'm prone to episodes of vasovagal syncope and suffer easily from shock - have done all my life) which is very possible - this wouldn't explain how the tremors started in one tow five years ago and have spread up my right leg into my entire body 24/7 would it? Plus the pulsitile Tinnitus on top of usual stuff is driving me mad!
No green or brown phlegm and no fever. So no antibiotics. It is definitely still in my sinuses though because I can feel it under my eyes.
I've ruled out pulmonary hypertension now because my rheum would be extremely aware of this with her being a Scleroderma specialist and she told me she has studied imaging from 2016 and my cardiac workout this time last year and says I have no lung involvement.
I emailed her photos of RA hands so it's part of my picture/ baseline, a few of monitor showing huge swings in BP (today up at 162/112) and informed her of my maternal history of angina and atherosclerosis. I'm guessing they feel the cardiac work up of a year ago is enough to exclude this despite 2015 Doppler showing mild disease in all carotid arteries. High BP? I don't think she can justifiably rule out that my CKD stage 2 is caused by Sjögren's rather than "essential" hypertension as presently assumed. But my dad and both younger sisters all have essential hypertension so I'm keeping an open mind. My BP became normal range while on Prednilone despite tremors and slightly manic feeling. So now it's gone right up again.
Over the phone she felt that my problem with cough sounds quite possibly asthmatic with the classic Sjögren's sticky cough, thick sputem - but I'm actually wondering if Pleurisy is a better candidate as overnight, now off steroids, the chest pain has returned. The pain I felt prior to steroids was very much in keeping with pleurisy - sharp stabbing pain in heart area with cough and ache in shoulder. Now it's returned without so much coughing.
Maybe you are right and it's all due to this virus and my weakened immune system. I see good GP again tomorrow so will ask but my main focus now is on asthma, pleurisy, Parkinson's, Dysautonomia and prinzmetal angina - which I think led to my mum's sudden death from atherosclerosis. The reason I think prinzmetal is because of vasovagal responses to cold, and because it wouldn't show up in cardio assessment and because, until recently, this mainly affects me when I'm resting or sleeping - horizontal. Also I would like to return to central sleep apnea and be additionally assessed because I'm totally exhausted after a lifetime of not sleeping for more than a few hours. Obstructive sleep apnea has been ruled out apparently - not sure this is reasonable though. Xx
Dear Mat51,
Of COURSE we have heightened health awareness. It is a normal result of having horrible chronic health issues.
I think I speak for all of us when I say that I KNOW I have 'heightened health awareness', and ALSO that for my entire life I have also questioned my perceptions about my health. I have feared that I was neurotic or a hypochondriac (not a term used much any more).
However, after many many years of experience I know this: I am NOT a hypochondriac. My heightened awareness is NORMAL for some one with the level of pain and the number of conditions I experience. As my brilliant Duke Immunologist says: We use the tests we have, not the tests we need.
We describe symptoms and conditions for which there are no tests, YET. And, of course, probably no treatments. But that doesn't mean our symptoms and conditions aren't REAL. Just think of the symptoms and conditions that now can be diagnosed and treated but for which there was no diagnosis or treatment 100 years ago, or even 50 years ago.
It is, alas, our job to try to educate the health care professionals we deal with. If your healthcare professional won't be 'educated' (learn from you) then, if possible, change providers.
I know that it isn't easy to change providers in many countries, and in areas where specialists are few and far between.
By the way, I take guaifenesin twice a day, to thin my mucus, which is otherwise like glue and 'gags' me at night. It works very well. I also irrigate my sinuses with a saline spray, and use Nasonex twice daily. This is to help with post nasal drip.
I have IVIG every four weeks, so no longer have sinus infections or bronchitis. This is because my Immune Deficiency is in IgG and IgM. The IVIG is IgG. For those with a deficiency in IgA, sinus infections and bronchitis may still occur all too often, alas.
I wish you well. You are doing an amazing job of advocating for yourself. It is a full time occupation for most of us!
I have horrible tinnitus (in three part 'harmony' in my right ear). I have a white noise machine next to my bed, and it helps at night. I've had tinnitus for 20 years, and it has gotten worse in my right ear. The diagnosis is Meniere's, which is another co-condition of those with Immune Disorders.
For me this led eventually to moderate hearing loss in both ears, by the way.
Most of the time I am able to 'ignore' the tinnitus, but all of our conditions have an emotional price, MAT51.
Regards, Elaine
Keep in mind that pulmonary hypertension ISN'T about typical lung involvement...it's about heart and artery involvement.
The scleroderma specialist might look at lung CT imaging, etc as part of her of work-up, but that is not how you'll see PH. The first testing done for PH is cardiac ECHO, x-ray (to look at right side of heart and pulmonary arteries), ECG, and right side catheterization. They don't look into the lungs for PH. So you may very well have PH...or at least a precursor to it. Have you had an ECHO? If so, was that part of last year's work-up? Pardon me if you knew all this. Your comment about lung involvement (and no mention of heart/artery) in regards to PH made me wonder. Just want to make sure. Can you describe your shortness of breath and how it appears (with exertion, stairs, flat ground, laying down, etc) and effects you?
One more question about the tremors. Can you 'see' the tremors all over? I don't understand if the doctors can see the tremors, why they are dismissing them. There are fasciculations...which are like internal tremors and very common with SFN. I get these in various places...legs, thighs, even torso and butt. Sometimes it runs full length of spine down back of legs, and into feet. It can be rhythmic.
If it is essential tremors, then your PCP can prescribe beta-blockers to see if it helps. It is a very common treatment of this type of tremors and may help you...at least lessen the tremors. Doesn't need a neuro to Rx this medication.
Anita I'm sorry not to have responded sooner. But for some reason I keep getting logged out and am not always receiving alerts so I didn't see this one from you until now.
Well slowly but surely I'm getting somewhere - not with symptoms so much but with understanding and meds and my doctors. I think my rheum has ruled out PH from the CT with I had contrast - thorax to pelvis - in summer 2016. I don't think I have had an echo, just ECG (same thing??) but could be wrong? I had treadmill and ECG as part of work up at the end of 2016 and this excluded cardiovascular disease but flagged up hypertension - despite already being on meds.
So I saw my very good GP (who sadly for me only works in this capacity two mornings a week but is really astute and seems happy to have me as her patient and goes the extra mile for me and others when she's working as breast clinic consultant in my hospital the rest of the time). I should explain that the NHS only allows GPs to spend ten minutes with each patient but she seems to accommodate me by giving me double appointments somehow. This one lasted 40 minutes!
So I gave her a full list of my symptoms, explained about the rheum's decision to take me straight off Cellcept rather than taper due to the tremors and extra parasthesia I described plus my awful cough. I then handed her my BP recordings taken at random intervals since she lowered my BP med a month ago. She became very concerned because it's been so high since I got off Prednisolone and Cellcept - particularly the diastolic readings and my heart rate. She said the immediate priority has to be getting my BP back down to under 140/90 - presently I have readings of 160/116 for example. She says I already have some kidney involvement and it's possible that the Cellcept was addressing this as the microscopic haematuria has gone since I went up to 3g and my ANA titre has come down one level and IgG and Creatinine have come down too. My plasma viscocity is soaring though and despite rheum saying this is normal in Sjögren's she's not convinced this is so. This said the cold virus and Sjögren's combined and/or Cellcept might be causing my tremors and vertigo/ severe dizziness and pulsatile Tinnitus.
So I went off with a script for rapid release Propranolol - one last thing at night. And she said if I tolerate it and don't have asthma attacks then I can have it slow release - so that's my first ever beta blocker now under way. I think it's helped get my BP better controlled but I'm still getting the internal resting tremors, dizziness, pulsatile Tinnitus and sticky cough. So me being me with my "heightened health awareness" ::) I started to fret about whether the dizziness with heart burn and resting tremors could all be something like Parkinson's - particularly as I've lost my sense of smell and have this awful numb rigidity in my face all the time. So I phoned a free helpline yesterday on Parkinson's UK and the woman told me about something called Parkinsonism which she said sounded more likely forbid me given my history and the medications I've been on - particularly Cellcept. She gave me the number of a dedicated neuro nurse for a charity called Brain & Spine Foundation to phone.
Reply to Anita cont....
Well despite being blocked in with snow and feeling generally awful I managed to speak to someone for a long time today. She was brilliant!! So she explained the things you have always said about SFN, felt Parkinson's very unlikely for me but was very concerned about the acute stuff - particularly my very high BP. So she advised me to get the slow release Propranalol ASAP and emphasised sleep and getting my BP back under control as most important of all for now.
The dizziness and vertigo she feels are due to inner ear problem relating to the virus and my Sjögren's. Nothing much I can do about this or cough but sit them out. She felt the neuro is awful and says that unfortunately the UK has the worst provision for neurology and worst shortage of neurologists in the western world. So there's no way that my SFN will ever be treated with anything other than what I've already been offered and finding a better neurologist isn't an immediate priority for me compared to having good primary care and a good rheumatologist. And I'm lucky that I do at least seem to have both. Otherwise keeping my kidneys okay and keeping on top or the ocular, oral and nasal dryness (one of the worse problems for me just now - left eye apparently showing the strain despite plugs and drops) and keeping mobile despite the ongoing SFN is really key. I am getting physiotherapy next month and my occupational therapist has made me night resting splints for the subtle SFN tremor that has taken over both arms.
So perhaps my need for neurology input isn't really that great. And also perhaps this hike in neuropathy will settle down as Cellcept leaves my body along with awful ENT virus and the beta blocker starts to work it's magic? Here's hoping anyway. X
Quote from: Carolina on February 26, 2018, 06:30:30 AM
Dear Mat51,
Of COURSE we have heightened health awareness. It is a normal result of having horrible chronic health issues.
I think I speak for all of us when I say that I KNOW I have 'heightened health awareness', and ALSO that for my entire life I have also questioned my perceptions about my health. I have feared that I was neurotic or a hypochondriac (not a term used much any more).
However, after many many years of experience I know this: I am NOT a hypochondriac. My heightened awareness is NORMAL for some one with the level of pain and the number of conditions I experience. As my brilliant Duke Immunologist says: We use the tests we have, not the tests we need.
We describe symptoms and conditions for which there are no tests, YET. And, of course, probably no treatments. But that doesn't mean our symptoms and conditions aren't REAL. Just think of the symptoms and conditions that now can be diagnosed and treated but for which there was no diagnosis or treatment 100 years ago, or even 50 years ago.
It is, alas, our job to try to educate the health care professionals we deal with. If your healthcare professional won't be 'educated' (learn from you) then, if possible, change providers.
I know that it isn't easy to change providers in many countries, and in areas where specialists are few and far between.
By the way, I take guaifenesin twice a day, to thin my mucus, which is otherwise like glue and 'gags' me at night. It works very well. I also irrigate my sinuses with a saline spray, and use Nasonex twice daily. This is to help with post nasal drip.
I have IVIG every four weeks, so no longer have sinus infections or bronchitis. This is because my Immune Deficiency is in IgG and IgM. The IVIG is IgG. For those with a deficiency in IgA, sinus infections and bronchitis may still occur all too often, alas.
I wish you well. You are doing an amazing job of advocating for yourself. It is a full time occupation for most of us!
I have horrible tinnitus (in three part 'harmony' in my right ear). I have a white noise machine next to my bed, and it helps at night. I've had tinnitus for 20 years, and it has gotten worse in my right ear. The diagnosis is Meniere's, which is another co-condition of those with Immune Disorders.
For me this led eventually to moderate hearing loss in both ears, by the way.
Most of the time I am able to 'ignore' the tinnitus, but all of our conditions have an emotional price, MAT51.
Regards, Elaine
Thanks so much Elaine. Please see my reply post to Anita's re probable inner ear disease and other update. You are so right about the emotional price of having so many lousy symptoms - it's a collaboration from heck isn't it? I don't think many non chronically ill people "get it" though - including doctors. The best thing I've found i can do is when we meet someone medical of our own age and stage - and flatly describe the impact the whole lot combined make on our every day lives - I do sometimes see them really wince at the collective awfulness.
For me personally I'd put tinnitus at about no.7 or 8 on list of symptoms I'd kick out if there was an option to! The first would be the painful neuropathy in my mouth 24/7, second would be restoring my sense of taste and smell. Third would be getting to sleep more than two hour stretches which would involve getting free of oral and nasal dryness. Then fourth would be getting rid of the very longstanding SFN fine tremor the length of both my arms. Fifth would be getting rid of the numbness and rigidity in my face. Sixth would have been sorting out my guts but I'm on a great new drug for that now, Linaclotide. So it's got to be being able to stand for longer than 20 seconds really, After that would come sorting out the tinnitus and dizziness and vertigo all together in one go! Xx
Ps So I'm dozing off now after a long day couped up in the extreme snow caused by what we here in UK are calling "the Beast from the East". I did manage to slither my way along the road the pharmacy to collect a couple of urgent prescriptions but oh boy am I whacked out and spinning now! X
Quote from: anita on February 26, 2018, 06:51:31 PM
Keep in mind that pulmonary hypertension ISN'T about typical lung involvement...it's about heart and artery involvement.
The scleroderma specialist might look at lung CT imaging, etc as part of her of work-up, but that is not how you'll see PH. The first testing done for PH is cardiac ECHO, x-ray (to look at right side of heart and pulmonary arteries), ECG, and right side catheterization. They don't look into the lungs for PH. So you may very well have PH...or at least a precursor to it. Have you had an ECHO? If so, was that part of last year's work-up? Pardon me if you knew all this. Your comment about lung involvement (and no mention of heart/artery) in regards to PH made me wonder. Just want to make sure. Can you describe your shortness of breath and how it appears (with exertion, stairs, flat ground, laying down, etc) and effects you?
One more question about the tremors. Can you 'see' the tremors all over? I don't understand if the doctors can see the tremors, why they are dismissing them. There are fasciculations...which are like internal tremors and very common with SFN. I get these in various places...legs, thighs, even torso and butt. Sometimes it runs full length of spine down back of legs, and into feet. It can be rhythmic.
If it is essential tremors, then your PCP can prescribe beta-blockers to see if it helps. It is a very common treatment of this type of tremors and may help you...at least lessen the tremors. Doesn't need a neuro to Rx this medication.
PS just dropped off and all body tremor kicked in again. Is this what yours is like too i.e an internal shaking tremor (invisible to the naked eye I am guessing) thoughout your body within a minute or two of falling asleep? I need some proper sleep again so badly and it does scare the wits out of me I admit. I get a few hours a night free with the rapid release beta blocker but hopefully may get longer once I get some slow release ones off the doctor next week. X
I think you'll do better with the slow release for the tremors...and BP control!!!
Yes, the internal tremors are like I get and the beta-blocker I take (Toprol XL) helps it.
The CT with or without contrast CANNOT tell if you have PH...PH is a cardiac problem not a lung problem. PH involves the pulmonary arteries. The CT only shows your lungs and such, not pressures in your arteries. You need an ECHO (ultrasound of the heart) to check for this. and other tests, including catheterization (through the groin into heart) to check for PH.
Not sure who mentioned PH to you or why they thought this might be an issue for you, but you haven't been tested for it based upon what you've listed.
If your shortness of breath hasn't been resolved, then by all means ask for proper testing for PH. If you cannot walk up slight inclines (like one flight of stairs), or even level surfaces for up to 5 minutes without getting SOB, then you need to be checked for PH.
Hi Anita. I don't think I do have PH because I climb our stairs at home daily without much SOB and I had to do treadmill test as part of the cardio work up and was fine. The paramedics came over on Friday night as I had a mini seizure of these twitches and tremors and my pulse was through the roof day. They ran an ECG and tested blood glucose and my oxygen sats - all fine. My BP and pulse and temperature were still quite high but I was in middle of one of my fierce coughing attacks and also too dizzy to get back from hospital myself - car is snow bound. So we decide not to bother with ER as I clearly wasn't going to drop dead and instead I phoned out of hours next and a clinician came, found me much calmer with no cough and diagnosed probable viral labyrinthitis - gave me stemotil to take. So I've swapped Cellcept for stemotil and beta blocker somehow?! For me the increase in Vasovagal syncope abd orthostatic hypotension are the alarming characteristics and I am glad that I will get bloods done on Wednesday and get my eGFR checked for renal damage.
I think you are very fortunate in that you have such a good rheum who takes your version of Sjögren's very seriously. Actually I think mine does too but as so many features are tied up in the neurological side of things and it's seronegative they all persist in this idea that it's predominantly a glandular disease and don't take the SFN or autonomic side of things as seriously as I feel they should - particularly the huge swings in my blood pressure from very high to very low.
Yes, my rheumy is very attentive and it helps that he is also a neurologist...one that understand the neuro side of Sjogren's and how much it can effect basic functions of life.
Just had surgery Friday...to remove gallbladder. Been struggling with GI stuff for 10 months and finally narrowed it down to gallbladder. The ultrasound showed no stones, but the function test showed significant filling and emptying disfunction. I'm hoping this makes eating easier and stops all the vomiting and nausea. The surgeon said that my autonomic problems could be linked to the gallbladder not functioning properly. He said there is new research that the vagus nerve effects gallbladder function...and we all know the autonomic disfunction greatly effects the vagus nerve.
I thought you were having more problems with SOB. Glad to hear it's not an issue. Hoping you get some relief here soon with viral/infection etc and get to feeling better overall.
Oh okay hope the GB surgery went smoothly for you and you really feel the benefits.
For once I'm ahead of you on something Anita! The removal of my gallbladder in 2015 was a bit of a disaster. Basically I had it done in small island hospital about ten years after gallstones had been identified and having bailed out of the op 3 times previously. I should have left it well alone as the scan operator advised. But every time I had Pancreatitis that year or any acute GI problems they misdiagnosed cholecystectitis and I thought it would help me getting it out of the equation for good. Anyway it turned out that my gallbladder was perfectly happy with only one very large gallstone and wasn't inflamed at all but had calmly attached itself to my liver.
And because there is only one theatre and one scrub team which was due to finish work any time - the surgeon had no choice/ time but to prise it off my liver and out through the keyhole incision. This led to a severe wound infection and my second sepsis in six months. And since then I'm really not sure but it has taken my new med, linaclotide, to restore bowel and gut equilibrium to a great extent after a few awful years. I hope you fared much better with this.
There always seem to be chain reactions that lead us back to the vagus nerve don't you think?
For me this a family thing - organs slipping about with stretchy guts. My cervix is tilted as is my womb. I've also recently learned from a physio that I'm almost certainly hypermobile. Will ask my rheum about this in April.
Re the breathlessness - I'm very often breathless and choke a lot. I've only just worked out why though. Basically while my GPs merrily shell out diagnoses such as adult onset asthma and labyrinthitis - my Sjögren's has definitely been flaring quite classically. I've had two salivary gland stones, some corneal abrasion and, most troubling to me - this thick white flour and paste sputum that has been plugging up my airways at night. To the point of waking me suffocating - and causing me to cough and cough or retch until it finally releases. I'm minded to think the trauma of this has affected my vagus nerve and is the cause of my tremors, mini seizures and even the huge swings in BP. I will ask my rheum but she sort of posed this idea herself while I was coughing horribly on the phone to her several weeks ago. I believe there's a med which the U.K. Sjögren's specialist recommended to me called Carbocisteine. I will soon post to ask people,e here what they think about this. Xx
I swear my gallbladder should have come out years ago. I have been hospitalized with pancreatitis on four occasions...last they said it was chronic pancreatitis. I have always suffered with GI stuff...and being that I only have a 4% empty time of my stomach showing severe gastroparesis, everyone ALWAYS attributes ANY GI problems to my gastroparesis and not something else like the gallbladder. I had to PUSH for the function test this time. Literally, the GI doctor did a scope, then ordered the ultrasound (which was fine) and ordered a feeding tube!! I kid you not, he just stopped looking for the problem and decided to put a feeding tube in as I lost 15 pounds in 10 days. The procedure was ordered and I said NO, and asked my PCP to order the function test...which of course showed the true problem! It's like we have to be our own doctor these days!!
I haven't got the report back from the gallbladder yet. Surgeon said all gallbladders 'look' normal on the outside unless they have scaring or cancer tumor. He sent mine to lab for pathology to check inside the gallbladder, which is where they would find sludge, etc and signs of inflammation, etc. The test showed it wasn't filling or emptying properly, so regardless of what they find inside surgeon is convinced it was the problem.
Have you been checked for candida? The thick white sputum is classic of thrush. And with antibiotics, it will only get worse. Candida also causes a vast array of problems internally as well...as thrush/candida rages in the gut.
I have the hypermobile issues ranging from double jointed arms/hands/legs, etc and tilted organs as well. We are like to peas in a pod!!
Isn't it so ironic that we forsake so much for Sjögren's and end up doing some of the work of doctors unpaid just to save our own skins?!
I guess I struggle with getting this awful sweet tasting goo, that has ramped up a gear or three, identified correctly because my doctors and dentist have no concept of anything relating to Sjögren's really. They just keep treating me for a series of viral infections that I have in common with their other patients.
So I present before Christmas with a foul and painful fungal infection under my breasts. Hmmm the little, clearly prudish doctor says - just a nasty fungal infection of the skin - here's anti fungal cream. But could this be that I'm very immune suppressed and shouldn't you treat me systemically for candida infection and give my body a break from Cellcept? Oh no - we see this in elderly care homes a lot - it's just a common fungal infection of the skin affecting your sweaty bits. But I'm not in care home for the elderly - nor am I elderly - and nor do I sweat much or routinely suffer fungal infections? Shrug and prescription. The gross boils go but I have to keep plying this stuff in other parts now. Hope coming off Cellcept will sort it out as the skin on my face has become so much nicer again since I stoped taking it.
So now a different GP (I have one excellent GP but she only works two mornings a week in this capacity) will phone any moment and I'll try to explain the thick goo and ask for thrush testing. He will say that oral thrush shows up as red patches and cottage cheese in the mouth and I will have a choice of saying "not in Sjögren's it doesn't always because our mouths are dry" or "well in that case could I try Carbocysteine as recommended for sticky cough for me in letter you received from Sjögren's specialist?". The goo has been bothersome for ages now Anita - but recently as internal tremors started I found my awful cough yielded sweet tasting milky white goo rather than salty!
Hmmm. Meanwhile one eye has mucin strings and some early corneal abrasions despite frequent drops and I spat out a salivary gland stone a few weeks ago after hideous intermittent oral pain - haven't been bothered since. So I have to decide whether to further confirm my "heightened health awareness" to this GP or whether to steer him towards Carbocysteine and treat myself as a systemic Candida patient at same time?
The final option is my favoured one just now. Pandering to doctor egos seems best unless it's life threatening as yours was. Xx
Quote from: anita on March 05, 2018, 06:52:19 PM
I swear my gallbladder should have come out years ago. I have been hospitalized with pancreatitis on four occasions...last they said it was chronic pancreatitis. I have always suffered with GI stuff...and being that I only have a 4% empty time of my stomach showing severe gastroparesis, everyone ALWAYS attributes ANY GI problems to my gastroparesis and not something else like the gallbladder. I had to PUSH for the function test this time. Literally, the GI doctor did a scope, then ordered the ultrasound (which was fine) and ordered a feeding tube!! I kid you not, he just stopped looking for the problem and decided to put a feeding tube in as I lost 15 pounds in 10 days. The procedure was ordered and I said NO, and asked my PCP to order the function test...which of course showed the true problem! It's like we have to be our own doctor these days!!
I haven't got the report back from the gallbladder yet. Surgeon said all gallbladders 'look' normal on the outside unless they have scaring or cancer tumor. He sent mine to lab for pathology to check inside the gallbladder, which is where they would find sludge, etc and signs of inflammation, etc. The test showed it wasn't filling or emptying properly, so regardless of what they find inside surgeon is convinced it was the problem.
Have you been checked for candida? The thick white sputum is classic of thrush. And with antibiotics, it will only get worse. Candida also causes a vast array of problems internally as well...as thrush/candida rages in the gut.
I have the hypermobile issues ranging from double jointed arms/hands/legs, etc and tilted organs as well. We are like to peas in a pod!!
Update:I spoke to a GP on phone (dizziness too bad to go into see them in person). He said that he didn't think the very viscose saliva I describe sounds like oral thrush. He said he would be willing to prescribe Carbocysteine off licence for me as a specialist has recommended it in a letter but feels I should only be trying one new drug at a time and I'm trying the beta blocker. He was unwilling to switch me to the slow release as he said I need to see the GP who prescribed it. He says he doesn't agree that my dizziness and vertigo and pulsitile tinnitus are viral labyrinthitis as this would be a short term thing and I've had it 24 for nearly a year in varying degrees. He thinks I need to see an ENT for assessment for inner ear disorder such as Mennieres. He summed up that we need to prioritise my multiple symptoms in terms of urgency so I need to work out which is affecting me worse and then they can try treating each set of symptoms methodically to avoid drug interactions. Sensible really but I don't know which is worse - gagging on viscose sputum goo all the time or dizziness and vertigo. He didn't believe they were all part of the same thing, Sjögren's. I do though as I'm fabulously hyperviscose always. That's just my version of this disease I think! X
That is so sad that he won't even check/test for candida/thrush...being that you HAD a recent fungal (THRUSH) infection under the breasts...classic of candida presentation!! You should just go online and research natural remedies...like apple cider vinegar and other treatments, being that the GP won't help. Do a little reading about internal systemic candida. It can get REAL nasty and cause all sorts of serious problems. Just ask Gurs on this forum...she has endured severe thrush/fungal problems...she has a ton of experience and insight. I know she can point you in the right direction. Worth a PM to her.
Well my fungal infection was before Christmas but I take your point. My mouth looks normal is the problem despite my first Angular Chelitis for years and other stuff. I'm seeing a dermatologist next week and can always ask my dentist but the absence of red patches and cottage cheese lumps they are unlikely to swab.
I recall Mrs D from the other forum giving me some great tips for self treating so I'll have a go. I'm already drinking a glass of organic cider vinegar with beetroot Juice daily (ugh).
Isn't it more likely that the voscocity of my sputum is like the viscosity I'm my left eye and my blood eh Plasma Viscocity was 2.00 last month (normal is 1.00-1.72) ie sed rate (aprox ESR 100) - which, in absence of other problems such as infection or RA, PsA activity, seems to suggest my Sjögren's is making me very viscose everywhere? That's how it feels to me anyway - that Sjögren's is a disease that makes me hyperviscose when it's very active. X
Quote from: anita on March 06, 2018, 06:31:32 PM
That is so sad that he won't even check/test for candida/thrush...being that you HAD a recent fungal (THRUSH) infection under the breasts...classic of candida presentation!! You should just go online and research natural remedies...like apple cider vinegar and other treatments, being that the GP won't help. Do a little reading about internal systemic candida. It can get REAL nasty and cause all sorts of serious problems. Just ask Gurs on this forum...she has endured severe thrush/fungal problems...she has a ton of experience and insight. I know she can point you in the right direction. Worth a PM to her.
PS forgot to say that I hope you're recovering well from the cholecystectomy - and more inportany - being proven right for wanting it removed?
It makes perfect sense, that viscosity everywhere would/could be effected by Sjogren's...and the absence of saliva.
I'm recovering, but have a hard mass in the center of my abdomen. I'm hoping it is still the pressure of the gas they used to inflate the cavity so they can see what they are doing, but it's been since Friday and it hasn't gone away yet. I also have a rash in the same area...almost like a heat rash (tiny red dots), but of course not hot or sweating, etc. It's been there 3 days now without fading, so I don't think it's a heat rash that would come/go with fever, etc. And I haven't had a fever in 3 days either.
I'm sure this is what the problem was...as I can eat now! They saw the function test was abnormal, so they were on board after see those results.
Going to have to call the surgeon first thing in the morning. There is signs of fresh internal bleeding in that hard area in the center of my abdomen. The old yellow bruising now has fresh new purple bruising. Not a good sign.
But as for the viscosity...perfectly logical since Sjogren's effects ALL moisture producing glands throughout the body.