I would not want you to undergo a biopsy just for the sake of confirmation...if it meant nothing else. Many doctors won't treat Sjogren's (alone) without a lip biopsy or positive bloods...that is just wrong. There is always times where 'clinical' Dx is enough to begin treatment. But in this case, IVIG (and likely other big gun treatments) will NOT be approved unless you can show confirmation of the SFN. There is no 'test' to prove the SFN came from Sjogren's...this would be the only thing 'presumed' since you have confirmation of the Sjogren's. But you have to show the SFN if you want to treat the SFN. You can see how strict the guidelines are for IVIG...this is solely due to cost and availability. My IVIG runs $30,000 each dose! This is a blood product and blood is commonly in short supply, so they have to be careful how they hand out this product. They are not going to give it to you unless you can prove you have SFN from the Sjogren's (hoping that they have updated their criteria guidelines from 2011 to include autoimmune based SFN).

I had asked on another thread you started whether you had ever had the EMG and NCS (nerve conduction studies)...I don't think you saw the post as you never answered. Can I assume you have not had these done before? They will help in some ways (mostly to prove that there is not large fiber involvement or other nerve related disease process), but they are not going to tell you if you have SFN. The NCS can ONLY check large fibers...they cannot detect problems in small unmyelinated fibers...the only way to check this is the biopsy. So this test will likely come back negative for you.

You may have some large fiber neuropathy causing the weakness and pins/needles...but it's more likely to be SFN (as this is more common with Sjogren's).

She is not thinking things through...if you were on immunosuppression and your symptoms were getting better, than she can gauge the progression is being reduced...simple logic. If your symptoms continue to get worse, then the treatment failed...again, simple logic. But not trying means you will certainly progress and she will be able to sit back and watch it happen (while you suffer)!!

Lyrica and Neurontin will only mask your symptoms to make you more comfortable...they do NOT slow progression or improve the basis of the disease process.

So, your NCS will likely be negative...because these tests are not able to detect SFN. I know that will be disappointing for you, but she is only ruling out other causes...not confirming the SFN. The only way to do this is the skin biopsy.

Stick to your guns and push for the biopsy. If she feels your symptoms are all SFN related to the Sjogren's, then IVIG is your best option for slowing progression and symptom improvement (not masking).

Thanks Bluesfan - I admit I lack the strength of will to do good eliminations although I was gluten free for five years but going g back on gluten has made no significant difference to me. I will read your link on BMS later - although I've already researched this because one of my sisters suffers badly from it too. They offered her the lip biopsy but she decided against because she deaf and needs her mouth to lip read. And more to the point, if they won't treat Sjogrens with anything more than Gaberpentin etc then really what is the point?

I was gluten free for 2 years. I went back to eating it this summer. No difference here either.

Also, I had the lip biopsy done by an ENT in NYC I was sent to by my rheumatolgist. The swelling and recovery was terrible for me. Also it was done almost 2 years ago and I still have 2 numb spots. It came up borderline, or "equivocal". I wish I could go back and not have this done. All they offered was plaquenil anyway.

Oh dear sorry I never replied on the other thread. My email notifications are a bit patchy from the other site so I didn't see it.

I do entirely take your point and, as you will see if you read my replies to others - I have written to her making exactly this point about the skin biopsies. But I get a strong sense that she is very obstinate so I think my best bet is to level with the new rheumy at the end of next month - and show them what my research has yielded - including the Wallace Sjogrens book - which is already four years out of date but supports the much more up to date research findings of the John Hopkins. I recall someone in Scotland telling me she has neuro sjogrens and gets IViG so it must be possible - although this was confirmed in London where her rheumy sent her for biopsies. I do need a doctor I can be own about this information with but my instincts tell me that the neuro is not the one to level with on this way.

I had NCS in January of last year and they were all fine. I had an EMG last August and this was fine too. It is because of the weakness in my limbs and pins and needles in my hands that she wants this repeated in my new hospital. I'm quite sure it will all be negative as you suggest though. I'm certainly not postponing my rheumy appointment until it's done as she suggested.

I did wonder if her reason for being so against immunesuppressants for me is because of the higher risk of Lymphoma with Sjogrens? I was reading about findings of paired 'o' bands in CSF and having high numbers of lymphocytes in all my biopsied saliva glands. Does this increase our risk as SS sufferers and are immunesuppressants then making us even more vulnerable?

Also, given Fibromyalgia is very closely associated with SFN and SS as a comorbidity - do neurologists and rheumatologists tend to lump them together -hence the enthusiasm for antidepressants and anticonvulsants? I've never been diagnosed with Fibro at all but always expect to!

I've been having a big SFN flare up since returning back to island home so am very preoccupied by finding a treatment to slow it down. Lots of problems with itchy fingertips and worsening dry eyes and mouth plus the awful fatigue. I feel like a right text book SS victim just now! ��������

To be honest, I just don't know whether risk factors for lymphoma increase with paired 'O' bands and then use of immunosuppressants. I would have to research this more. I'm going on vacation tomorrow for a week, so may have to wait until I return.

How far off is the Rheumy appt?

Sadly, there are doctors that like to lump Fibro with SS and SFN and then offer the antidepressants, etc. being that no one has brought it up yet, I would think this means they believe your symptoms are solely SFN and SS related and hopefully will treat accordingly when they have all their ducks in a row.

Sorry to be putting you to work Enbloc - I just know how good you are at finding answers for me so am being an opportunist! Please don't think about it anymore and just enjoy your holiday.

My rheumy apt is on 28th November. Shed loads of pain in bones, tendons and joints to report. I took a lot of nsaids when my RA first came on the scene. Unfortunately I found it worsened my gastritis after a year so had to stop. As I'm suffering from severe swallowing difficulties and oesophogal pain now I think I'd better pass. There's always Nefopam in my med box and I can tolerate this. But the drug I really miss is Naproxen, which helped me with all types of pain. However, with my swallowing issues and GERD I think is better not risk taking any nsaids at all now. What a mess and muddle to find myself in! Only option is to go and ask my former GPs down the road and they are going to say that they don't have access to my notes anymore so can't really help.�� Oh well only five weeks to go!

Mat, "I was reading about findings of paired 'o' bands in CSF".

Oligoclonal antibody bands in CSF are often strongly diagnostic of multiple sclerosis - from memory this does not apply to you (?).

Oligoclonal antibody bands in plasma but not CSF can indicate a range of B cell neoplasia (multiple myeloma among others).

If you are concerned about this you could get your rheumatologist to arrange to check this out - it is easy to do and could put your mind to rest about it.

Thanks Kiwi. I think it's differently significant if the o bands are paired to if the blood or CFS shows more bands than the other - which is more likely MS. If they are paired in blood as in same number of bands in CSF to blood then there are various things it can signify - but it's very non specific. In my case the neuro says it's not a normal finding but most probably Sjogrens. MS and SS can overlap very closely in terms of symptoms.

Regarding Myltiple Myeloma - this has been ruled out thankfully from negative Bence Jones tests and CT with contrast from thorax to pelvis. My pain is all in my legs and arms and mouth. I do have bad osteoarthritis in my lower back and hips but I knew about this already and it isn't contributing to my neuro symptoms. I also have white matter in my brain but it hasn't worsened in 18 months so this also signifies Sjogrens in the form of small vessel disease rather than MS or vascular dementia or anything more sinister.

So the nerve conduction tests are to be repeated next and after large fibre involvement has been ruled out it's all just down to a neurological presentation of Sjogrens, requiring nothing but topical treatments and Pregabalin or Carbamazepine - if I was willing to try these - which I'm not!

I don't know about the 'o' bands.
I had Lymphoma, my condition seems as SjS (negative SSA SSB, lip biopsy) and I had got many of the risks of SjS. According to my neuro and hemato-oncologist most of the immunosuppressants increase the risks for Lymphoma, but not IVIG and Rituximab. IVIG isn't an immunosuppressant, and Rituximab is used as a treatment for Lymphoma.

Sorry you have had Lymphoma to cope with stillHoping. I would really like to be allowed to try IViG - but it isn't looking very likely just now so Rituximab may be more possible. However I suppose it should maybe be saved as an option in the event of getting Lymphoma. I have read of immunosuppressants being linked to increased risk of lymphoma too but I suspect the neuro isn't coming from this perspective. Thanks for confirming.