Quote:
Originally Posted by en bloc
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).
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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! ��������