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Originally Posted by MAT52
Thanks Enbloc. I will keep trying - can't give up after getting this far don't worry! What do you think could be causing the weakness and pins and needles in my arms if not SFN? Do you think there's any chance that something will show up in my nerve conduction tests this time? My reflexes were fine when she checked my knees but didn't respond when she checked my arms/ elbows. I feel my elbows are at the heart of things but it seems odd it's in both elbows and pins and needles is in both hands and night knuckle pain in fourth and fifth knuckles on both hands - although marginally worse on right side always.
There was a fundamental contradiction in what she was saying. She told me that if I'd been on immunesuppressants now then it would be very hard for her to gauge changes and progression of symptoms - and yet she wants me to try Pregabalin/Lyrica? She calls drugs such as Rituximab "sinister" but is happy to dole out drugs such as Gaberpentin and Pregabalin - which as far as I can tell are mind altering?
I did listen to my recording of this consultation and my husband commented that I kept rattling on about the punch biopsies. As you can see in my reply to Bluesfan I have explained to her in a letter that, even with her clinical judgement that I have SFN - in my experience this will always be "presumed" without hard evidence to confirm.
She said "we can't keep cutting bits out of you on a weekly basis?! This isn't necessary when I believe you and am happy to change this from presumed to a formal diagnosis now we know you have Sjogrens ". But where funding for IViG is concerned it would probably be a different matter as you say. On the other hand a skin biopsy wouldn't take long to do and yield answers, so I think the nerve conduction tests are more urgent and, awful as it is to say, I need these to be positive in order for her to support me taking further proper medications. Fingers crossed, if only I could! Mat x
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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).