The letter helps a bit, but he's not very specific about what he's referring to in regards to the neurological manifestations...as he mentioned SFN, disequilibrium, and the SVID/SVD. He doesn't mentioned CNS...and there is a difference between neuro manifestations and CNS (because SFN is a peripheral development, not CNS).

He only brings up the SVID as it does appear in those with Sjogren's...which it does. He doesn't refer to this as the main neuro symptom. He states the SFN and disequilibrium as main symptoms/problems. Therefore, I think he's addressing the immunosuppression as being related to helping these...as he would consider this treatment if both Sjogren's & neuro manifestations are confirmed (which are his two questions).

I DO think there is possibly something neuro related with the disequilibrium/vertigo. I agree that autonomic testing would be a good idea as maybe this disequilibrium/vertigo is a vagus nerve problem. Have you read anything about the vagus nerve? It can cause a variety of problems, including unusual dizziness.

I think my best summary of his letter is that he feels immunosuppression is best course IF there is confirmation (from other doctors) of both Sjogren's and neuro manifestation of Sjogren's (which he is referring to SFN and the disequilibrium/vertigo). This would be a normal course of action to treat SFN resulting from Sjogren's. I don't think they know what is causing the disequilibrium, but they likely think it's Sjogren's or neuro related. Keep in mind that autonomic dysfunction (which may be causing the vertigo) IS related to SFN...and is peripheral not CNS.

There is no indication he is considering a CNS involvement...thankfully!! That should ease your mind, for sure.

I also agree that Cellcept would be a good option to try once all your testing is done (don't want to medicate before you complete testing).

Thanks Enbloc. I think the reason I thought he was referring to CNS involvement is because this is what he said to my husband and I - but he seems to have changed this to SVD with PNS in his letter. It's all rather confusing for an addled person like me right in the middle of third house move in less than a year. Thanks so much for translating - I don't know what I'd do without you! X

He may have said something to you in regards to CNS in the context of doing the MRI to 'check' for any CNS signs. I completely understand how visits with doctors can be confusing and so much gets said in a very short period of time. Then many times what is written is not what has been said...that happens in the US just as frequently.

I know you feel as if they have limited resources in Scotland, and your Dx has come rather slow (you have suffered quite some time with unanswered questions/symptoms). But, all in all, you seem to be getting good care and appropriate testing done at this point in your new location. I hope they repeat the biopsy for confirmation, so there is no more comments like 'presumed' SFN. I would imagine they can also do at least basic autonomic testing (tilt table, 24 hours BP, holter, and maybe even a QSART or thermo sweat test). Most of these tests are very easily done in any setting/facility (except sweat testing).

I agree that if something horrible (lymphoma) was on the CT ,you would have heard by now...so that's a relief.

Let's see what your MRI shows and go from there. The neuro kept Birnbaum's article for a reason...hope she took time later to read it.

If the MRI shows up with anything significant, I'm sure they will move up your rheumy and neuro appts. You should have these results next week sometime.

It can be a frustrating process (getting a proper Dx and treatment plan) with lots of ups/downs, but you're more than half way through it now and only a little more to go. There is a ton of people here to help you and I'm convinced you'll get a good rheumy as a replacement. The neuro will take note of the letter and results and change her tune, as well. It's all downhill from here.

Yes you are right - the turning point was the lip biopsy results. I feel reasonably confident about the new hospital because it's a large international university hospital and they have so far been kind and efficient. The only exception has been the neuro but hopefully she will change her tune with this new diagnosis. I'm fairly sure they don't do a sweat test anywhere in UK apart from possibly in London. But tilt and others should be simple enough. I've self tested my BP and heart rate while resting and then standing and it doesn't seem to add up to PoTS. My BP is consistently rather high despite a BP med.

It's the sweat test I'd like to have most but can't get to the Mayo or John Hopkins so probably won't be an option for me.

You and others have really helped me to work things out and have given me a good idea of what to expect. I've got a horrible head cold presently but am feeling a lot less anxious now at least. Many thanks.