Hi Sjögren's friends. I've been up to my dry eyeballs in life. My mother in law died last week so I have to travel the length of UK for her funeral on Friday. Meanwhile the advanced rheumatology physiotherapist has referred me for an urgent Sacral Lumbar MRI tomorrow to exclude possible Cauda Equina Syndrome. I'm sure it will exclude this as I've had my muscle tone (pelvic floor) tested internally and it's fine. But it's hard for me when they ask about numbness, tingle bottom and leg pain because of such a diffuse SFN.
And I still haven't had the results of my brain and neck MRI back from 2 months ago! I'm assuming all is fine but when I phoned the Rheumatology desk to ask they just said that there is a dire shortage of secretaries in the NHS so letter probably hasn't been typed yet. They said they would let me know by phone but I've heard zilch. My GP says my neck is okay - just the same arthritis which hasn't progressed apparently - but nothing back about my brain.
Meanwhile, as well as the pain in my lower back and pelvis (including genital pain) difficulty with standing, the leaden feeling in my arms and hands is getting steadily worse and I know that sciatica/ Cauda Equina Syndrome wouldn't explain it. My hands are so painful despite only some new wear and tear in top finger joints - can't see any swelling - and the pain isn't burning or cold - it's just pure pain that wakes me all through the night same as my back and feet. Does this all sound like it could be SFN progressing or flaring or other? It's been very hot here for Scotland and I'm guessing that the heat may be making me flare up too.
Also I've just been treated with a course of antibiotics for e-Coli infection/ bacterial vaginosis. Ugh?! :-\
Does any of this sound Sjögren's related I wonder?
Well, At least they will rule out the Cauda Equina Syndrome. I'm sure it's not that. This is usually a medical emergency and can cause incontinence and paralysis, which you haven't mentioned any problem in this area.
Hopefully they will get your results soon.
Hi Anita - how are you? Yes it will be good to have some clarity through this MRI today. I have lost a lot of sensation over the past 5 years and I do have severe constipation with some incontinence (hence the severe bacterial infection I'm guessing) - plus the standing still with jelly legs issue. We have assumed this is SFN related but sciatica and Cauda Equina are both possible candidates too. My mother in law died a week ago so I have to travel for her funeral on Thursday - by which time I will hopefully be reassured that I don't have Cauda Equina. It's actually very hard to know with SFN because most of the symptoms apply to me, to an extent, anyhow.
It is equally possible to have partial Cauda Equina as total - which is why I'm having urgent MRI today. The sooner they catch it the less likely it is to become total but it doesn't always present itself suddenly as a medical emergency.
Dear MAT51, I read your post and I hope you are getting the help you need.
I suffered from acute Sciatica starting in July 2016, and lasting until I had a laminectomy on my lumbar spine in October of that year. It was horror show. I could not stand for more than a few seconds, and often could not sit, either. Only lying flat would give me an relief. I feared back surgery, but it was 100% successful, with no problems.
I hope you have relief soon.
Regards, Elaine
I really doubt it is the Cauda Equina...so rare. But they will determine one way or the other with MRI. I wish they would use the money spent on these pricey MRI's and get that skin biopsy done again. SFN goes hand in hand with Sjogren's and with you being Dx with that definitively, it makes much more since that it is SFN...yours being non-length dependent (which is more severe and wide spread then length dependent). I know they keep telling you there is nothing to do, but there is. Even if you can't do the medications there are spinal cord stimulators (pacemakers for chronic pain), or even nerve blocks, if it gets real bad. But there are also topicals (lidocain patches, Voltaren gel, etc). Not to mention there are new medications coming out all the time, and you have only tried a few. There must be a couple dozen meds (in different classes) they use now...as they learn all the time about new med side-effects alleviating nerve pain (which is how Neurontin and Lyrica both got started as the first meds for this---the side effects for the seizure patients using Neurontin and Lyrica was reducing nerve pain and they discovered it was the medication for the seizures).
I feel certain one day they will have answers for you...and a plan. Just hoping you don't have to wait too much longer for this information.
As for me, pulmonologist feels 95% positive I have pulmonary hypertension (high pressures in the pulmonary artery). There is right side heart failure already present (but not too bad yet) and all other signs from echo and breathing tests are showing PH. So cardiologist is doing right heart catheterization next week to confirm and see how advanced mine is. Maybe they are wrong...wouldn't that be nice!
I think with all your symptoms a MRI is inn order to rule out ruptured discs or any other reason for compression on the spinal cord. This can cause a lot of issues and can be really hard to sort out If you have unusual symptoms or lack of the normal symptoms you can have compression on your spinal cord and not even know it. My Neuro has listened to me complain of all my back pain, sciatica, foot pain, arm pain, etc for years.
Last fall I complained about pain and burning in a different way and it caused her to order both cervical and lumbar MRIs with dye. Low and behold I had serious compression of spinal cord at C4C5 and needed spinal surgery with resultant cadaver disc placed plus a plate and screws holding everything together. I still have pain and symptoms that are really confusing but at least I don't have to worry about paralysis or death. My neuro was really surprised at my issues and was so quiet and serious when she told me I could be paralysed or possibly die. She was so low key about it that I didn't even get too shook up but was so glad when the surgery was over
I wish you luck as you pursue all these issues and keep after the doctors to figure this out. Irish
Hello Irish - sorry it's taken me an age to reply. I've been assailed by a run of bad life events from death of mother in law, subsequent funeral attendance and travel fatigue, endless courses of antibiotics due to intense groin and genital pain, ever increasing amounts of haematuria and sometimes WBCs, ecoli BV and so on. I am blaming Sjögren's even if that's harsh - this disease is endlessly causing mischief and mayhem I feel!
Anyway I finally got copies of my MRI reports: so I have significant degenerative disc disease in my C5/6 and C6/7. There is some cord flattening and severe narrowing of the foramen leading into left arm with C5/6. Right arm okay apparently but with C6/7 there's a "broad based central disc protrusion and annular tear abbuting and flattening the cord".
No one has contacted me about these results yet and MRI was performed in early May. I still haven't heard anything from neurology.
The lumbar sacral MRI earlier this month showed no Cauda Equina but I do have a herniated L5,S1 disc which is pressing on the sacral nerve causing the sciatica in my left butt and leg.
I'm not sure if neuro physio - whom I see for first time on 1st August, will suggest I see neuro surgeon for the cervical problem but I'm mighty fed up with having pins and needles in both arms including finger tips and a very weak, jerky left arm 24/7! I shouldn't complain after what you and Anita have had to put up with but I am feeling rather low and worried that this seems to be going unheeded so far - although I see the rheum or vascular dr again in a month. I suspect I have cervical myelopathy to explain flrcsome of my issues at least but am aware that this probably won't bring about any new Sjögren's/ inflammatory arthritis treatments - all wear and tear? X
This makes much more sense then other things they have been considering. DDD is common as we age, and Sjogren's can certainly speed up the process of damage. I hope they get you a surgical consult soon. They have many types of minimal surgical options now to alleviate compression....maybe they can get you some relief with minimal invasive techniques.
Please keep us posted on what the PT tells you and getting you another consult.
The sciatica and arm issues are probably different causes. I would ask for EMG to check out carpal tunnel and/or ulnar nerve compression. Also, hopefully an mri with dye will show if there are discs in cervical area are being compressed or having other issues.
So many issues come with these autoimmune disease plus as the years go by the aging process tends to take over also Then there is the sciatica. I have had this off and on ince age 21 and sometimes it just wears a person out. I always used to say that it lasts 6 weeks no matter what kind of treatment one does. Good luck. Irish
Of course, I am not a doctor....these are just my experiences!!!
Thanks Anita and Irish. I agree with you both on all fronts. In fact I feel really angry that they have had but overlooked or failed to tell me this information about my cervical spine for a few months now. I have been reporting these issues for ages and saying there's more to this than SFN on its own with me and also asking if something much more obvious, such as osteoarthritis was at work, given I'm 55 and had an early menopause. I agree with you Anita that Sjögren's often exaggerated the ageing process too.
However I'm not sure if this would account for the extent of my problems in my arms and legs? Whicc really are in the extreme end of ulnar nerve compression now (defintely not carpal as wrong fingers affected and my left arm up to above elbow. I can't evem turn over in bed and carry a pillow to rest them on if I'm sitting for long as they twitch and quake! Equally my legs won't hold me for long. Here's the MRI report of cervical spine in case you've had similar:
MRI Spine cervical
Normal vertical body height and alignment
C3/4: no significant abnormality
C4/5: no significant abnormality
C5/6: there is broad based moderately large left paracentral and left foraminal disc extrusion projecting into the left exit foramen and causing significant narrowing. The right exit foramen is patent
C6/7: Broad based posterior central disc protrusion with an annular tear which is abutting and slightly flattening the cord in the anterior aspect but there is no obvious foraminal stenosis on either side.
C7/T1: No significant abnormality.
The cord returns normal signal. Normal cranocervical junction.
Opinion: Significant degenerative disc disease involving C5/6 and C6/7. Please correlate clinically
I guess you are at the point where you need too ask your doc what you should do about your pain, etc. If nothing else you could see orthopedics and see what they have to say. The docs don't say much cause many people can have significant scans etc. and never have pain. It is such an individual thing.
I would just talk about pain, etc and not mention scans. Just ask if there is anything you can do cause you can't stand it. Sometimes one feels like screaming from the pain when talking to the doc. One just never knows how long we are supposed to live with some of this junk. Good luck.
P.S. I have no clue why docs do tests and never get back to us with results. Did they send you a letter? That is the way they do it in my neck of the woods. Irish
Hi Irish - thanks for your response. The thing is that I haven't had lots of pain at all? In fact my pain radar is pretty good and is always commensurate to activity within rather than heightened sensitivity to pain. This is why I get so mad when people assume that, having Sjögren's, I must also have Fibromyalgia!
I've given birth three times to long back to back babies and had pancreatitis mistaken for cholecystitis and UTI sepsis because apparently I would be in agony with pancreatitis and I clearly wasn't! Or rather I was but I failed to scream or lie on the floor rolling with pain. So sometimes my responses aren't even commensurate!
I do realise that degenerative changes are just considered part of the course as we age. But I had been led to believe by all my doctors, partculsrly the awful neurologist I saw due to pins and needles the length of both arms (left much more so) in November - painful only in my fingertips - that this was "just" SFN and the weakness in my grip and I'm my left arm especially (like lugging a dead rabbit around with me) was all the result of my overthinking - or "heightened health awareness" as the neuro kindly described it!
So, to read this report, and realise that there is actually a very rational explanation here for the reason I struggle to stand and why I can barely turn myself over in bed now for numbness and weakness and have no grip strength and awful pins and needles - well it's due to the narrowing of the tunnel for my nerve on left arm because of a disc protrusion. And the other is flattening the cord at my C6/7 - which may not yet be stenosis but is hardly an innocent bit of wear and tear either?! And my lumbar herniated disc is also causing left sided narrowing and touching my sacral cord - well it sort of beggars belief to me that they thought this was all SFN and of the mind?
The problem is that SFN masks or exaggerates pain - or does both. It certainly skews mine because mostly it's tingle and numbness like my entire skin surface is quite numb - with wee break outs in my mouth and occasional Trigeminal Neuralgia and this new groin and genital and lower back pain. Also +3 blood in my pee always now I'm off the Cellcept. Boy I'm fed up with antibiotics for UTIs - now on 3rd course in four weeks.
And all this info has been around for months and no one has thought to tell me due to it all being presumed age related so of no interest?! I even saw my man GP a few months ago complaining my left arm was dead all the time and he read the neuro's letter and implied that it was all of the mind! I asked for MRI result and was told by him that all was same as previously plus some arthritis.
They usually do write with results but I guess this time they thought it was just wear and tear so why bother? In seeing rheum or vascular doctor again for review in a month so I will tell them what I've written here and see what they have to say. Maybe they will send me to a neuro surgeon.
Meanwhile, if my GP still refuses to expidate my neurology appointment then I'm resolved to find the money somehow and see one privately here in a neighbouring city in Scotland for a one off attempt to untangle all this and get proper advice on a sensible course of action if physiotherapy doesn't help. Mat x
I just wanted to say that I feel for you. I landed in ER this past weekend with severe pain shooting down my right leg whenever I tried to walk or turn. I will get my results tomorrow on my lumber spine MRI. It took me years to get that MRI. My neck has DDD, multilevel arthritis and stenosis in my C5, 6 and 7. Hang in there. Just say "this is my situation at this time." It seems to help me get through the pain and waiting.
Thanks very much for this reply and sorry to be so slow responding. Sorry also that you're in so much pain yourself. I'm trying Lyrica to see if it helps having been told that the pelvic pain isn't due to the L5,S1 herniated disc but instead relates to my neuropathy.
MAT51- Has your doctor tried steroids (like prednisone in higher doses) and or strong anti-inflammatory drugs to help with the sciatica pain? I have sciatica down both legs and also get the groin pain like you do from an L4 and L5-S1 compression. The prednisone helps significantly when I get major flares, some people majorly benefit from Epidural Steroid Injections done under flouroscopy called ESI that I would recommend asking a pain or orthopedic doctor about for help.
When things are really bad I will lay down and put an ice bag on my spine right at the belt level (where L5 is) and this will quickly help calm things down.
Hope some of this helps you find some relief. I know many of the people on the board have also felt the severe searing pain and or numbness episodes you have been experiencing.
Thanks so much Kristian. Since I posted about this several things have emerged. The first is that my doctor and the neuro PT have explained that the L5/S1 will not be the cause of my groin and genital pain. The pain I would and do have radiates from my left buttock down the back of my left leg into my little toe. Yes I have this pain but it's very mild compared to the lower back and groin pain.
My doctor therefore is sure that the pain I'm experiencing relates to the Sjögren's small fibre neuropathy. But even if they felt it was the herniated disc I don't think they would offer me steroids or guided injection for it somehow. They don't think it's inflammatory - they say it's part of common degenerative disc disease which apparently is just age related.
The other issue I've had is that I've had small petechiae spots on my feet and shins. I sometimes get these but in this instance they have been larger and dark purple on the top and sides of my left foot. I asked a doctor because I was concerned that the blood in my pee, lower back pain and spots might be connected. She agreed that Vasculitis is a strong possibility.
So far I've only been offered nerve pain anticonvulsant drugs. I was on steroids for six months before I arrived here and they worked very well. But now my new doctors refuse to let me try them again or even have a steroid injection. I'm hoping this might change when I see my rheumatogist again a week tomorrow - but she might first want to biopsy the spots if they return - to establish whether this is some sort of Vasculitis. So I really fear i may go untreated for a while longer. My GP had put me on Lyrica for the neuropathic pain in my groin I'm taking it reluctantly because I'd prefer to have been offered steroids but I am in too much pain to argue! X
Hi :)
I found physical therapy, inserts in my shoes to correct foot roll and Amitriptyline at night helped with sciatica. if I forget to take the Amitriptyline it comes back - but not as bad as it was before. I only take 10mg of it - more is too drying.
Hope you find a way to get relief.
take care - Scottie :)