Waiting impatiently for test results
 

I'm hoping no news is good news this time. Haven't updated here since my rheumatology appointment nearly weeks ago. As expected I was rediagnosed from 2011 diagnosis of seronegative RA to primary Sjogren's. It was a little more daunting than what I was expecting because he then went on to say "without wishing to frighten you more than necessary" - that he was concerned my neuro symptoms were showing CNS involvement as part of the Sjogren's. I had a brain MRI in a different hospital 18 months ago and was told all was normal despite some white matter signifying small vessel disease.

The rheumatologist has written to the neurologist (who told me I was overthinking and looked too well to have a multisystem disease back in April:rolleyes:) asking her to study my previous MRI and compare it with a new one I am getting done tomorrow. His hunch is that the SVD is part of my Sjogren's and if she concurs with this then he thinks I should try a big gun drug such as Rituximab.

He also sent me for a CT with contrast of thorax down to pelvis to rule out Sjogrens associated Lymphoma because of other symptoms and a swollen lymph node in my groin. I had this done a week ago and have heard nothing yet, so cautiously assuming that no news is good news - although this is the beleaguered NHS so I will phone hospital in a few days and clarify. Fingers crossed!

I'm feeling strangely calm and optimistic about all this now thanks to friends on the Sjogren's World Forum,Lupus UK healthunlocked and the Brittish Sjogren's Syndrome Association forum. I guess I also just feel SO much better to have a diagnosis I believe and can attribute most, if not all of my symptoms at last. I'm not expecting either test to show up anything too scary. And even if it does I'm just too sick of worrying after five years of feeling wrongly diagnosed and always up against it. It's relative chill time just now.

However I will always feel the greatest about of sympathy for those who are unable to find a proper reason for their symptoms or enough signs be properly diagnosed or treated. The shadowlands are no place to dwell for too long. Even waiting for results is less awful now there's a disease name attached at last. Courage and perseverence to all shadowlanders here.

If anyone else here suffers from disequilbrium/ vertigo as a result of small vessel disease in the brain then it would be great to hear from you about how it feels. Regarding my small fibre neuropathy (legs, arms and mouth) where has mine gone? I know about the SFN causing propriception problems and am thinking mine is a classic case of these peripheral issues too. But what I'm not quite sure about is whether the SFN is severe enough to have caused this severity of disequilbrium? The rheumatologist calls it "presumed SFN" because it didn't show up in skin biopsies taken from each calf last year. I admit that I just can't tell if the neuropathy is bad enough to cause my quite severe disequilbrium because it's stopped hurting much for a while now. It still does tingle and I do still have vague crawling sensations and occasional flash pains in my hands. But it's really nothing to moan about- not the excruciating symptom that paralysed me each night this time last year. So have many of my tiny nerves died causing some numbness as the neuro thought or has the SFN simply subsided? How can I tell? More importantly how can a neurologist tell without biopsying me again - this time properly?

Small vessel ischemic disease in the brain does NOT typically cause vertigo as you describe. Actually, most people don't have any symptoms unless it is wide spread or significant in size/amount of the ischemia (which yours did not indicate). The only other symptoms typically reported with SVID is cognitive type problems with thinking, memory, etc...which you haven't said you experience. Again, this would only be normally seen with significant SVID, not mild.

So hopefully this will ease your mind about the significance of this finding. I can say that the SVID may be from the Sjogren's...I have pretty significant SVID as a result of my Sjogren's...but I also have APS and have had 3 strokes and numerous TIA's.

It will be very interesting to see if there is any changes in your MRI from 18 months ago and now...that is what will tell whether your changes (vertigo) are consistent with any disease process that has progressed. If I remember correctly, you didn't have the vertigo back when the first MRI was done.

You really need another biopsy. I thought you had positive findings for SFN on the first. If it was negative, then by all means it should be repeated. And most importantly, is to have the morphology done on the next skin biopsy. One significant finding with Sjogren's related SFN is that the fiber density can be normal but the morphology (condition of the fibers) show damage. My density was normal on the first biopsy, but the damage was very clear with segmented, torturous, and swollen fibers in many areas. This is what Sjogren's can do to the fibers...not necessarily only reducing density. And this finding is just, if not more, important. You also need to have more than one location done on each leg. There is NO way to determine length or non-length dependent SFN if only one site is biopsied on the each leg.

Hope this helps. Please keep us posted.

Mat

Thanks for getting back to us - had been wondering how you were getting on.
As bad as it may sound to say "well done" on getting your Sjogren's diagnosis, it was your perseverance, determination and conviction that you knew something was wrong, that got you there. I hope you feel even a small sense of victory at having taken on the NHS system (with all it's faults), and triumphed over all the naysayers you had to put up with along the way. If nothing else the experience will have given you great skills to manage your own health outcomes in the future.

I can empathize on the sense of relief at finally having a definitive diagnosis after so many years. My father had Sjogren's for many years and it's something I've been tested for (and will continue to be as I already have another auto-immune condition). I wish you all the best for the forthcoming tests and it's good to hear you're getting lots of support from others with the condition.

Thanks Enbloc - this is all in line with what I suspected so am grateful with you for both confirming and reassuring me. I absolutely hate the thought of vascular dementia because both my parents had this in the run up to their untimely deaths from cardiac arrest. But you are right to say that I have no signs of cognitive impairment yet. Just this wretched vertigo/ disequilbrium. I actually did have it last year too around the period of time the MRI was done but it was more intermittent and I didn't have it that actual week or month. However I had it a few months before when I went to see the neurologist for the first time so it was on the menu so to speak!

I'm not at all confident that my skin biopsies were taken correctly since my GP offered to do them when I was ill with pneumonia. He was a little pushy as had never done this before and wanted the experience. He followed the neuro pathologist's instructions and took one punch biopsy from the outer side of each calf. Which makes me think that neither knew what to do properly! I may have to push to be sent to London for it although the big hospital I'm with now should be much better placed to know what to do.

I know you are spot on because there is an article about it in an edition I have of the Brittish Sjogren's Syndrome Association magazine from earlier this year - in an edition dedicated to SFN and ganglionopathy of Sjogrens - showing photos of where the biopsy should be taken from. There seems to only be one from each leg though but these are far closer to the ankle than mine were. I'm also not that confident that the samples were stored and dispatched at the right temperature seeing as they were taken while on my island home and send to two different hospitals.

So my rheumatologist refers to my SFN as presumed rather than clinically diagnosed. This is why I'm not that confident that I will qualify for any further immunesuppression such as Cellcept if there is no organ involvement showing up from my CT/ MRI. I will try to discuss this with my neurologist next month.

I know you are very much further down the line than me with symptoms and signs, but out of interest had your SFN turned from being severely painful to tingly and somewhat numb by the time your second biopsies were taken? I'm just not that confident that my symptoms show a worsening, although I do believe that pain is an indication that the tiny nerves haven't yet died? So my lack of pain in legs and feet now may signify worsening rather than improvement? The burning pins and needles pain is worse in my hands and arms than in my other extremities, but really not too bad at all compared to this time last year.

Thanks Bluesfan - yes I absolutely do feel vindicated you are right! I wrote a post on Lupus UK forum headed "vindication by lip biopsy" and this expresses my sense of triumph I think.

However the reality is that primary Sjogren's (clinically diagnosed that is) is listed as a rare disease here in the UK and very under recognised and misunderstood compared to the other connective tissue diseases compared to the USA and other countries. The NHS SS page makes no mention of SFN/ PN or neuro symptoms or drug treatment options. There is, I have observed, a newly formed alliance of rare rheumatic diseases in the UK. It includes Lupus, Scleroderma and Vasculitis but no mention of primary Sjogren's.

It appears that even when it's properly recognised/ diagnosed doctors think only of the dryness of eyes, mouth and vagina. This seems to be the extent of what many understand and the neuro symptoms require a specialist SS expert. I say this with confidence now that three rheumatologists and two neurologists have failed to identify mine - even with the sicca listed on my sheet of diagnosed conditions. It took my ANA switching from negative to positive to get the new chap to turn blood hound for me. And sadly he's retiring from practice this month.

So if I'm to qualify for anything other than topical treatments only (and I know these are very important of course) then I need to feel confident in neurologist and rheumatologist working together to find answers and treat the disease at source. Way still to go but extremely grateful for your support as ever. It's taken me longer to come here and report my news to date because I really wanted to have something more to ask and say than just a rather euphoric splurge! X

My SFN had increased in pain by the time the repeat biopsy was done (hence why we did it). The density was decreased from the first but more importantly, the condition of the fibers was once again showing clear damage...at every location (and I had 6 locations done--three sites on each leg---ankle, just above the knee and upper thigh). So the damage was wide-spread, typical with Sjogren's.

I have heard people here say that their pain turned to numbness, but most often I think it's just increased pain as the SFN worsens. The repeat biopsy would show definitively what you have going on...especially if they do morphology testing.

Thanks for describing your own experience. I must say I think mine peaked last year because I recall, following surgery for gallbladder, being in so much pain in my feet, legs and hands afterwards, that I barely noticed the localised pain of the operation site. The nurse was baffled by me as I kept crying out about my peripheries. "It must be some kind of bizarre referred pain?" one of them said to her colleague.

So now this stinging/ burning in my hands and vaguely numb sensation in feet just doesn't seem worthy of digging more wee holes out of myself for. I suppose I just think I should be very thankful rather than push for further tests. Plus I found the anaesthetic sites excruciating. But then each of us has our own unique response to pain so it could just be this. My GP took each of my biopsies from the area of my upper calves where I felt the least pain, just as the neuro pathologist suggested he do after tapping my calves with a nerve conduction pin.

I understand your thinking on this, but you might want to repeat the biopsy if they are considering any big guns. Knowing if you truly have SFN (and the extent of damage) would be critical info before even thinking of taking IVIG or Rituximab. One important factor to consider is having a baseline (which you really don't have since the biopsy wasn't done at the proper location or in more than one site...not to mention your question of handling/transport, etc.) Once you start a big gun treatment you will never know the original amount of damage and/or if the treatment is working. This is one of the great benefits of this test is that is is repeatable (many times) to gauge progression of disease process or documenting improvement so you know whether to continue treatment. And of course, the test is very minimally invasive with just tiny punches of skin being removed and simple bandaids for dressing.

Also, I can't image they would start a big gun if you didn't have confirmed SFN from the Sjogren's. They don't use Rituximab or IVIG for SVID or autonomic dysfunction. And I don't think you have said you have any organ involvement either (other reason to use these big guns). So confirming the SFN is really important if they still want to even think of a big gun treatment.

Just food for thought.

Yes - I have only just begun to think along these lines myself Enbloc but you may well be right.

My rheumatologist hasn't mentioned this option though. He seems to be thinking that progress of SVID will warrant a big gun of itself. In his clinical letter he is asking the neurologist to compare the two MRI scans and tell him whether these show progressive SVID which is in keeping with Sjogren's as he suspects - in which case he feels a further immunesupnpresant or a big gun is warranted. So his questions of neuro are two fold - have I got white matter showing SVID? And is the white matter sufficiently progressing in line with my Sjogren's? If answer to both is yes then he or his successor should consider these. IViG is not mentioned.

The CT a week ago was to look for other organ involvement. I take it that this showed none as I haven't heard anything yet but the MRI nurse said she wondered if he was trying to get all the info he's requested on his desk so he can look at the bigger picture. So not 100% sure about this either.

My feeling is that if nothing shows up that makes further immunesuppressants available to me I will ask about getting punch biopsies done. But last night I looked to see where UK Sjogrens experts were who might commission these biopsies. And this research confirmed that there is very little expertise for SS in the UK. The few that exist are in Newcastle and London. So your experience of investigations and treatment for SS is going to be very different to mine. I can't afford to seek this expertise out privately so have to hope that the knowledge is in this large university teaching Hospital - but just hasn't shown up on the expertise list yet.

To my dismay I found that there is a new alliance of rare rheumatic disease organisations in the UK and Sjogren's isn't even listed. This shows how far we have to go here in the UK I feel. It seems to be way behind other countries and on the NHS Sjogren's page neuropathy isn't even referred to. On the Patient.com page it says everyone with Sjogren's will have dry mouth and eyes. And yet in the BSSA magazine it says that some will present with neurological symptoms long before the disease manifests significantly in mouth or eyes.

Ps further to my earlier reply - I've recalled that my rheumy says that SFN of Sjogren's usually only goes so far and then stops and neither improves nor progresses - it is something sufferers just have to learn to live with. So, unlike SVID, it is not treated with big gun or immunesupnpresant therapies even when it is confirmed. Almost the opposite of what you have been told I think?

As you said, your rheumy (and your area) doesn't seem to have the expertise on Sjogren's, and this may be clearly evident by his comment that SFN doesn't progress in those with Sjogren's (very wrong). Was this the old doctor that just retired? I doubt he is up on the latest with Sjogren's.

I'm hoping your large teaching hospital offers you more options and opinions.

There are numerous articles (that have been posted on this board as well as Sjogren's World) that document the neuro complications (including SFN) of Sjogren's. There is NO mention of non-progression or that it will cause certain amount of damage then no more and patients just have to live with it. Sorry but that just blows my mind. But I feel confident you will get other opinions from your new rheumy and the team at this teaching hospital.

Well he is retiring but to his credit he was the fourth rheumy I've seen and the one to rediagnose me with primary Sjogren's and for that I'm very grateful. The problem is that he and his UK colleagues may not be gemmed up as I am having been able to research using reputable sites and speaking to people like yourself. Whereas they may not be reading up on Sjogren's because they are too busy with patients with other diseases?

I only had my brain MRI yesterday but plan to phone up the hospital and see if I can extract at least some of my results tomorrow. If my white matter has progressed beyond what is deemed as normal, then I'm not going to argue about trying Rituximab if I'm offered it. Otherwise I will see what the very dismissive ("you look too well to have a multisystem disease!") neurologist says in a month's time. I do wish the goal posts didn't keep changing.

Oh, I agree! At least he had to knowledge to order the lip biopsy and that gave you the Dx.

Doctors can chose to follow new research or not. Many don't have time and focus their studies on what they do know (like other more common diseases). Just don't let the lack of knowledge (from the doctor) send you in a direction that is incorrect. You can take your research (print your sites/articles) and show them to your doctor. Some doctors don't like patients to do this, but I'm of the mind that I'd rather have a doctor that is willing to learn what they don't know vs one that works off outdated or lack of information.

I'd love to read any article you've found on SVID from Sjogren's being treated with Rituximab. I'm always interested in treatment info on Sjogren's...especially since I have SVID.

Never hurts to try to get results...give them a call. I have gotten results by requesting the CD of the MRI (in the US, they commonly give CD copies for patients to take to other physicians)...they usually stick a copy of the written report/results in with the CD. Then I can read results before doctor calls and I'm also prepared with questions (since I've already seen the report). The worst they can say is NO.

Wow that's amazing re the CD! In UK many of us can't even access our blood test results in print form or get copies of consultant's letters. It's so paternalistic. My friend is getting up at dawn tomorrow to launch a tantrum upon our GP practice manager (primary care) because they sent her a text refusing to give her one of her repeat prescriptions and then lied, saying they had sent her a letter and a form to complete, when they had not. She has Addison's and Sjogren's (weird coincidence as she's my new friend here and we met through mutual friends who were unaware of our common health problems) with SFN in her toes. She was a head teacher until she was retired early on ill health grounds and she has offered to come with me to my neuro appointment next month. I do all the research into our shared condition and symptoms and she does the head teacher thing - quite a mutually beneficial arrangement really?!

I did give my neurologist the Birnbaum/ John Hopkins article about neuro Sjogren's back in March. She waved her hand disparagingly at me and said "yes yes we have other patients with Sjogren's - I know about this.." But I notice she handed everything else back to me telling me I was over thinking everything - but kept your rheumy's article?

This is old research from the BMJ from 2003, so no mention of Rituximab, but a good bit at the end about immunesuppression for SVID of Sjogren's - and for me an interesting mention of paired oligloclonal bands in CSF being an indicator of CNS involvement in SS. Central nervous system involvement in Sjogren’s syndrome -- Soliotis et al. 63 (6): 616 -- Annals of the Rheumatic Diseases

Thanks for the link.

I don't see SVID mentioned. Your MRI was dismissed, if I remember correctly as being non-specific. Do you have the actual report from the MRI? If so ,what does it say? I went back to posts from long ago and you reported that it only showed SVID that matches your age and stage...no lesions. But I don't know if this was what the doctor had told you then (and we all know how they like to minimize findings at times) and now you have seen the report and know more.

But honestly as I said before to help put your mind at ease a bit, SVID doesn't have many symptoms reported, except dementia/memory/etc in significant cases of SVID. It doesn't create a major CNS condition. I interpreted that article to be more about other, more serious, CNS conditions. And although they use immunosuppresion for serious CNS involvement, Rituximab is not in this class, per se. Rituxan is a biologic agent for monoclonal treatment, to target B cells...it is not a general immuno-suppressor like Imuran, Cellcept, Cytoxan, etc. And I just read an article from our National Institute of Health on Rituximab for CNS of primary Sjogren's and it was didn't have great results (Rituximab in central nervous system manifestations of patients with primary Sjogren's syndrome: results from the AIR registry. - PubMed - NCBI)

I would just wait and see what the MRI finds and see what the neurologist has to say (not that you were very impressed with her dismissal of your condition)...maybe ask for a second neuro opinion if you are permitted that in your system.

But don't jump with the Rituximab until they can tell you what symptom(s) it will improve (and you find something confirming this online). Because your vertigo is obviously from something else (Sjogren's related for sure, but not SVID), and this is the most debilitating symptom for you, if I'm not mistaken.

I so wish you can get hooked up with someone that has more experience with Sjogren's. Maybe the new rheumy (to replace the retired one) will have more knowledge on this subject...let's think positive that he/she will and help get you the treatment you need. Do you even have a follow up appt for a new rheumy?

Thanks for giving me your thoughts. You are right the SVID was non specific in the previous neurologist's report - it literally just said "small vessel disease in keeping with her age". Because it was from a different hospital the rheumy had to search it out during my appointment. He found it and wrote that Sjogren's would certainly account for SVID of this kind and commissioned a second MRI for me, 18 months later. I think it might be easier if I just started another post with the contents of the letter because you are much more sharp than me and will understand the implications better if you can read what he's actually saying. He told me he thought that my version of Sjogren's might be affecting my CNS.

I assume this was because of the disequilibrium I reported as my worst symptom presently - because he referred to this in his letter. He saw for himself that I struggled locating my chair following the examination. But he's a rheumy not a neurologist and he probably isn't qualified to assess this properly so he addresses the neurologist in the clinical letter. I didn't get sent a copy of this letter, my gp printed it off for me. So I'm just interpreting it for myself now in lieu of any other information.

I did phone the hospital for results but he's on annual leave until Monday so the CT report is on his desk - MRI not through yet. The secretary agreed that I can feel reassured that if anything suggesting lymphoma had flagged up in the CT report I'd probably know by now as the radiologist would have alerted one of his colleagues. So good news in this regard at least! My next rheumy appointment is booked for end of November but they can expedite it if there's anything urgent to be discussed. I asked about a replacement but she wouldn't comment. Rheumatologists are like gold dust in the UK so he won't be easy to replace.

Enbloc - here is the letter for your perusal if you would be so kind. Personally I would rather be allowed to try Cellcept/ Mycophenolate at this stage. Followed by the option of IViG - which has never been mentioned to me once by rheumatology or neurology.

"Labial gland biopsy fulfilled Cheson's criteria for Sjogren's Syndrome and overall I think this is a likely explanation of her symptoms. She has a long history of dryness (eyes,mouth and vaginal) for which she uses symptomatic treatment. She has also recently developed constipation which, although I would not associate with SJS, again maybe explained by reduced exocrine secretions. She complained of night sweats but her main symptoms are her presumed small fibre neuropathy and also her "disequilibrium".

"Opinion and Management"
"I would think we now have a firm diagnosis of primary SS. The likely major organ manifestation is neurological. I note she sees Dr (neuro) and has an appointment to go back in mid October. I note her MRI in (previous hospital) early 2015 showed some non-specific white matter changes consistent with small vessel disease. SVD is certainly something one might see in primary SS. I have requested an MRI and in view of her night sweats, CT of chest abdomen and pelvis. I think in terms of her neurology the 2 main questions are (1) does Dr (neuro in same new hospital) agree that what we at seeing is consistent with primary Sjogrens Syndrome and (2) is there currently active/ progress neurological disease. If the answer to both of these is positive then we should be considering further attempt at immunosuppression, perhaps with Rituximab"

"Follow up - 3 months"

"PS Dear (neuro), please see my questions above. I would be grateful if I could have your opinion regarding these. KR (rheumy)"

I'm sorry if this was already discussed. Did you have a full autonomic work up?
Tilt table, halter monitor, sweat test? So many of your symptoms seem like autonomic dysfunction. If you have the sfn symptoms, it could very well be dysautonomia causing the organ malfunctions and disequilibrium. It can cause distortions in vision, dryness in secretions, vertigo, among a hundred other issues. I am also back and fourth between a borderline SJS diagnosis vs another random connective tissue/neurological disease. I have some doctors say they think its autoimmune SJS and some say no, it is the autonomic damage causing the SJS symptoms of dry eyes.
Do you have a history of autoimmunity in your family?

Hi Healthgirl. No I've never had an autonomic work up. Not sure if they even do these where I am in Scotland. My SJS is now primary and definitive.

My family weren't a healthy lot although they tried by eating very well - and no history of autoimmunity that I'm aware of - but most died young from stuff like septicaemia, car crash, heart failure and hereditary, late-onset diabetes (type?) so I can't know this for sure now.

I'm fairly certain that my primary SJS and other autoimmunity were caused by my late mum starving me accidentally as a newborn. Her breast milk never came through properly because my grandmother told her not to feed me more often than 4 hourly. By the time a visiting nurse friend saw me I was a day off death from malnutrition, or so the reluctant story goes. Rather than telling any doctor, they took this nurse friend's advice and bulk fed me on semolina mixed with formula milk. I can only have been a month old at most. My Nan called me "Miss Semolina" but I only found out why once I'd prised this information out of my mum, who was so ashamed.

Consequently I was told and believed, until I was in my 40s, that my many facial rashes, GERD, intermittent constipation, sweats, fatigue and severe alopecia and chronic eczema were all a consequence of stress/ anxiety.

Lots of things have made sense to me recently but none of this is on my medical records... Yet!

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.