Hello , does anyone suffer from atonic bladder due to neuropathies? i have severe peripheral neuropathy both lower and upper extremities , and then it affected bladder ,
anyone suffers from same problem? is it all due to sjogren? anyadvice about treatments?
I have recently been diagnosed with small nerve peripheral neuropathy. I don't like to sound stupid but what is atomic bladder? If it means hard to pass urine I have had these probs. Also have raynaurds but I haven't mentioned it to anyone possible I have got just another symptom ! Perhaps medication I'm on Hope you get answers and relief soon. LottieD
yes dear , it means hard to pass urine and u have to strain to pass urine , recurrent UTI (urinary tract infections ) and in some cases you may need to void yourself using a tube inserted in your bladder called urinary catheter , you have to tell your doctor and most probably he will ask to do something called Urodynamics (test for bladder )
No as yet not had biopsy. I went to neurophysiology dept They then put things on legs and wrist and tested how you react to cold ad heat. Doctor told me results straight away. Now on neurologists long term condition clinic but not yet received date.
do you know the test name please?
do you feel pain amd tingling? apart from raynauld?
Regarding raynaulds phenomena u have to mention to your doctor because i have both raynaulds and neuropathy and other problems that leads the doctor to diagnose me Lupus !! take care raynauld's sometimes related to autoimmune diseases
The pain I feel is horrendous, burning legs every night. 21 tablets a day for nerve pain unable to sleep. Feel so tired. Now my stomach muscles have started to hurt so much I feel I've done hours of sit ups when I've just climbed the stairs! My cough is getting worse and am sounding like I smoke 40 cigs a day. Mum can find me in the supermarket just by the cough !! The list of symptoms is endless so I am not going to go on . Everything For the last 16 months has been terrible and I now find it hard to think how I was before. Now this is me! Wether or not life goes on.
same here but much worse , my only advice to u that most probably all theses endless problems seems to be due to a single disease (most probably autoimmune) that's why i advice you to tell all the list to your immunologist please .
wish u a speedy recovery !
please if you can find the test name for small nerve neuropathy send me urgently as i have same problem but my dr told me that in my country nothing to diagnose it except nerve biopsy and i dont wanna do anything invasive , so it will be amazing if u send me the test name to ask the dr about it
Hi - I'm based in Scotland and have had small fibre neuropathy in arms, legs and face for 7 years, getting gradually more severe until finally it is mostly just numbness and tingle everywhere.
My neurologist says she doesn't need a skin or nerve biopsy to diagnose this as my lip biopsy was very positive for Sjogrens so she is happy to clinically diagnose SFN on the strength of this.
I did have skin biopsies from both legs last year and they were negative but she says mine is so diffuse that it is possibly they were taken from the wrong place or the pathologist wasn't good enough as it wasn't done by her or my present hospital.
I asked her for retest now as it was done 18 months ago, but she says this isn't necessary and she knows I have Sjogrens and this form of neuropathy affects up to 50% of sufferers apparently. I also had a lumbar puncture last year which showed paired oligloclonal bands which aren't normal and suggest an inflammatory process - now assumed to be my Sjogrens. My ANA is positive for Scleroderma or polymyositis and I have raised IgG and IgA so the lip biopsy was requested to see exactly which connective tissue disease is causing the neuropathy. I'm okay with this although not offered any disease modifying treatments for it.
I was previously misdiagnosed and treated for RA and am aware that Scottish and Australian protocol seems to be not to use these drugs for small fibre neuropathy where the US is more proactive and allows for IViG and Rituximab for this problem sometimes. It's hard to cope with this knowledge if your country is falling behind others on research and treatment for Sjogrens I know. I believe Cellcept/ Mycophenolate has the best track record for helping this kind of SS neuropathy but it carries risks too so these need to be weighed up carefully. I'm thinking hard about this myself as have had some severe reactions to four disease modifying drugs previously. But I hate going numb and feeling off kilter all the time! I'm waiting for new nerve conduction studies to see if my Sjogrens is now affecting my large nerve fibres or not. If it is then I will certainly need treatment.
thank you so much for your time and effort writting for me , get well soon .
your dr did mention for u that such neuropathy caused by Sjogren could affect bladder nerves leading to atonic bladder?
Do you mean autonomic neuropathy? If so then my neurologist says that I do have this too - she calls it gangliopathy. In my case I believe it affects my bowels more than my bladder, although I do have microscopic haematuria and when I was sick last year I found it very hard to pee. Sjogren's can also affect the autonomic nervous system. For a small percentage of Sjogrens sufferers the disease can present almost exactly like MS. This presentation can affect bowel, gastric, bladder and sexual function exactly in the way that MS does. It can also cause orthostatic intolerance (dizziness from heart rate or BP swings). Again she didn't seem to think there was any treatment that would help this. But I am hoping my rheumatologist might think otherwise.
yes thats exactly what i mean , what kind of effect up on bowel do u have , is it kind of constipation or diarrhea or u mean crohn's or ulcerative colitis ?
It's a strange kind of constipation - not like IBS constipation or dryness but very sluggish and bizarre looking stools - I don't think I'm properly digesting foods especially dairy/ whey. I don't have discomfort or flatulence these days and had a colonoscopy which just showed haemorrhoids. Hard to know who to tell as it's not as if I have IBD/ Crohns or ever have diarrhoea. I've asked my GP who just gives me Senna plus Laxido. The Senna is fine but the Laxido really aggravates my tummy and turns me incontinent because I seem to have lost some sensation or the signals telling me to go aren't there? Really horrible symptom to try and describe but you did ask! My instincts tell me it's a neurological problem rather than one relating to dryness or a gut problem.
yes i did asked my neurologist , my bladder problem is nerve related yes , i've lost my sensation to go to urinate , and urination is very difficult,
but regarding bowel one , continous diarrhea after cellcept , myclophenolate , and Ritoximab
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