I’m reposting this because I think the previous heading might have been misleading.

As I have presumed SFN (Sjögren’s) and have now discovered herniated discs .. - which is mostly likely to be culprit for the parasthesia, weakness and twitches?

Would a neurologist be able to isolate my circuits by sending me for repeat EMG/ NCS perhaps plus skin biopsies to confirm the SFN?

This coming week I’m seeing a neuro PT for first time. But I’ve got very used to these health professionals and doctors assuming that SFN is a sort of fiction (functional neurological disorder seems on tip of all their tongues!) that only really exists in the mind. I’ve had a first second opinion neurology consultation appointment expedited to be with a neurology intern in one month so am paving the way for disappointment on the treatment front.

#1
MAT52
Member

Join Date: Feb 2015
Location: North of Scotland, UK
Posts: 506
Default Significant Degenerative Disc Disease in cervical spine.
I have posted this on the spine forum too. I have some questions about recent MRIs of sacral lumbar spine and cervical spine - hoping someone can tell me what course of action I should consider taking, if any.

I found out the other day that I have a herniated disc in the L5/S1 which is touching my left sacral nerve and causing some narrowing. This was no surprise to me and a relief to my physiotherapist who was concerned I may have Cauda Equina Syndrome.

What I have been more surprised by is that, when I collected print outs from my GP (I’m in Scotland, UK) of these scan reports to take to a neuro physio - I discovered a report from my cervical MRI. I have Sjögren’s Syndrome and Hashimoto’s so have been seeing neurologists for a few years. The first MRI was done 3 and half years ago and reported as some possible root involvement in the C5.

I’m a 55 year old woman with a rheumatic disease and widespread small fibre neuropathy so found it very aggravating that, when I tried to report that both arms were full of parasthesia and becoming increasingly weak and lifeless during periods of stillness/ rest, my neurologist just laughed at me and said I was overthinking. She wrote in her letter about me that she was concerned I have “some heightened health awareness”. Yes I do because I’m struggling to turn in bed now because my left arm feels so weak. I carry a cushion with me to rest my hands and arms on when resting.

She promised to check out MRIs from 2016 even though the numb, weak my tingly hands and arms only started to get bad in 2017. She said she couldn’t find anything to explain my symptoms.

This is the report of my recent cervical MRI done in May of this year and I’d be grateful if anyone could tell me if I’m right to feel vindicated and rather cross with the neurologist.

I also wonder whether of not this 3 year progression from possible root involvement to significant ddd, is normal?

Finally it would be really helpful to know if what is reported explains some of the twitches and weakness and pins and needles in my left arm - even though my right arm is almost as bad. Or is this the SFN? And if this report correlates with myarm symptoms then would this respond enough to neuro physiotherapy or would it warrant discussion with a neuro surgeon about possible surgical intervention?

Thanks very much,
Mat

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
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--come from compromise of nerve roots in the spine, if it is severe enough, one would expect something to show on EMG/NCS--and if that testing was done all up and down the arms and into the neck and shoulder, it may be determinable just where the compromise is coming from.

Spine problems that produce symptoms will usually produce evidence that goes all the way back to the spine, although you may notice it more peripherally. More peripheral problems will show up at and below the area of compromise.

Of course, small fiber problems don't show up on EMG/NCS at all; those nerve are just to small and narrow to be targeted by the currently available technology, which is why quantitative sensory testing, sudomotor testing, and skin biopsies are used to try to determine that.

And, remember, you could have both. I certainly do, and so do many others. In my case, though, the symptoms caused by each tend to be fairly distinct, and in the case of the spinal problems along clearly recognizable body regions--the dermatomes connected to the nerve root levels compromised. But, admittedly, it can be difficult to tease out just what is causing what, as the symptoms CAN feel exactly the same.

Thanks for coming to my aid again Genntaj. I think, when I learned about these two MRI resukts a week ago I was overwhelmed by a feeling of relief that, just possibly, surgical decompression might resolve my most disabling issues.

I guess it’s pretty natural to clutch at straws

But what I’ve started to appreciate is that it’s much more likely that the SFN is the major player for me. My pragmatic reasoning is that my issues are all bilateral whereas most of the radiculpathy is on my left side at both ends of my spine. Also my EMG/ NCS was only done 2 years ago and the young neuro physio noted the sensation of of arm weakness and leg I described, which I’ve suffered increasingly from for at least 7 years now. She made a real effort to try and measure signals in my nerves and muscles but found exceptionally healthy responses in each test she ran.

She was very surprised to find such healthy responses, having heard my account of these symptoms, and seen my discomfort for herself. I carry a soft pillow for resting my arms on during long journeys or at the cinema and hotel stays. I carry a fold out fisherman’s seat stick with me for if I need to queue or stand still or attend any functions. And yet my parasthesia predates the EMGs and has been getting steadily worse for a few years now. I am therefore forced to admit that it’s unlikely to be due to mechanical problems. But as you say I do realise that these can often co-exist and I think the spinal issues are increasingly contributing to my inflammatory poly SFN.

PS I call it inflammatory because my always elevated CRP fluctuates according to how much pain the SFN is causing. I know that a lot of the numbness and tingle is damage which has already occurred, so I would be very sceptical if a neuro surgeon told me that they thought surgical intervention was a good option for me to consider.

Yet another reason to ask for the repeat skin biopsy...I know you're likely tired of hearing me say this...LOL The first was not conclusive, not handled/transported properly (according to you), and they only did ONE site and NO morphology. There is NO way to determine length or non-length dependent SFN unless they test more then one site. Your wide-spread symptoms would point more toward non-length dependent, but then again, they will never know because they one tested one place. And, as in my case, it wasn't so much the nerve density that was initially the problem (but later density dropped), but the condition of the fibers itself. This is where the morphology comes into play and is so important. You could have damaged, swollen, segmented, etc., fibers...even with a normal density %.

So ask them to do another skin biopsy. As Glenn said, the EMG/NCS CANNOT tell you anything about SFN. But you can have more then one problem.

I've been dxed with SFN but only have symptoms induced by my inhaler medications so am not sure quite how to characterize it. I get arm weakness too but only when I have taken enough med to have SFN symptoms so for me at least I would say the weakness is neuropathy.

I also have had an MRI that showed cervical radiculopathy, I get neck pain which is also exacerbated/intensified by meds (the gift that keeps on giving ) but the only other symptom I have known for sure to be from the radiculopathy is that when I first noticed something was amiss occasionally it felt like something slipped out of place and I could not raise my arms. There was no sensation of weakness, arms just didn't work.

You comment about an inflammatory source was interesting to me, I have wondered that for myself as well.

Yes I reckoned you’d have something pertinent to say about the lack of skin biopsy evidence in this context! And I fully agree although I feel that, by stalling on this for years now, they may not be keen to perform this in my hospital’s neurology department. But I’m only seeing a registrar initially (is this what you call an intern perhaps?) ie someone not yet actually fully qualified to do more than pave the way for the specialist. But perhaps this will at last include the official SFN testing at last?

Then the neurologist will probably see me herself (I think I’ve got another woman neuro - hopefully less sarcastic and more up to scratch on Sjögren’s SFN) in a few more months with results of tests. The ever growing cynic in me says that this is just the NHS hospital buying time so that they can say it’s all damage done and no point in treating my SFN as it’s gone as far as it’s likely to - bearing in mind that I’m fairly numb everywhere now.

It also occurs to me that, if nothing shows up again with skin biopsies, then it’s likely that they will discharge me with Functional Neurological Disorder or Fibromyalgia secondary to my SS - which is a daunting prospect I admit. X

Thanks- this is interesting as I feel there is often a Mast Cell Activation component for many of us with SFN. And of course, with allergic conditions such as Asthma and Eczema (me) we are more likely to react to the chemicals used in all Big Pharma products, even those intended to protect us.

I mention that I’m sure my SFN has an inflammatory component because I have high sed rate/ plasma viscosity and CRP usually. And so far no one has traced this back to any one system ie my joints or inflammatory bowel disease or other organ involvement or skin. So I assume that it’s a mixture of an underlying Vasculitis, viscosity of my Sjögren’s and my small nerve fibres? It’s very much the norm for those with rheumatic diseases to have systemic inflammation but my instincts tell me mine is in my blood and nerves. I seem to have quite a lot of blood in my urine always despite no sign of kidney or bladder disease so I do think the systemic disease accounts for the SFN in my case. As you describe I only have occasional small clues of cervical and sacral spine involvement but as most of my symptoms are bilateral and longstanding the SFN is likely the much bigger culprit for me too.

You have mentioned the fear of it coming back negative before. This isn't a bad thing if it does. I don't think they will dismiss anything...I think they will just confirm that your spine is the problem, not SFN. You really need to know which it is. If biopsy is positive, it is both. If negative, it's just the spine...how is that bad? Frankly, that tells you how bad the cervical spine really is. Hanging on to the 'presumed' SFN with no confirmation at all, is only adding to the problem of no answers. If it IS the cervical spine, instead of SFN, then something at least may be done to fix it. They never looked beyond the 'presumption'...so they could have dealt with this a couple years ago had someone not presumed anything and stuck with facts and proof of a proper biopsy.

I bet you have both...at the very least, damage to the nerves...even if density is within normal range. But I doubt it is...and I think yours is non-length dependent (which requires at least 2 sites to confirm).

As always, Anita, you’ve galvanised me. My wonderful GP thinks along similar lines, although she is careful not to let on how badly she thinks neurology is letting me down. But she was the one who referred me for a second opinion and thought it “extremely rude” that I have never received a response from the other neurologist from my very eloquent letter of complaint. I have previously told her that I’m not happy with the SFN being presumed rather than diagnosed by skin biopsy.

This time she studied the two MRI reports and says she really doesn’t think these correlate much with my bilateral SFN symptoms. She says they could well be making me feel that these are progressing when in fact the spinal issues are just adding a bit to my existing SFN. She explained that there’s no nerve entrapment yet. Although it could well degenerate to nerve entrapment soon.

Equally she thinks the awful groin and genital pain is actually the SFN progressing rather than any form of cystitis - and thinks the blood in my pee is unrelated although it could be that the SFN (I suspect she’s thinking of pudendal Neuralgia which symptoms correspond more with my pain than Interstitial Cystitis) is likely. She’s therefore very firmly asked me to start Pregabalin (Lyrica), building slowly up to a high dose, to see if it helps. If it does then it’s highly likely to be neurological rather than infection/ cystitis related.

Other thing - she is very annoyed that I’m only down to see a neuro registrar. So she says I must insist on seeing a consultant (a fully qualified neurologist) and say I won’t leave until I do. Second opinions have to be undertaken by soneoneone if equivalent rank apparently and she fears it could take a three - six month wait to see a neurologist if I don’t see one in a month.

Now got to drive the length of my county to see a neuroPT for first time. I’m feeling rather anxious about this too as my bowels are taking turns to be very sluggish or very overactive. And I get barely any wanting either way so nosy mornings I stay near toilet at all times to avoid mishaps. I think chronic constipation and the SFN/ Pudendal Neuralgia are very much linked for me. I’m on maximum dose of Linacloctide and this helps but I have to be very careful about what and when I eat!

Would a course of steroids and the relief of it tell you that it may point to a spine/nerve issue Vs SFN ? Just wondering as I too have a polyneuropathy [unknown sfn] I did not get a biopsy but I did have a bad cervical issue 2018 with a lot of pain and turning my neck in certain positions would cause hand numbness, I did a course of 10 day oral steroids which cleared it up completely for about a year, but as of a few months back my neck gets a little sore so I do a lot of stretches. Just wondering about the steroid thought?