Discouraged and dismayed.

[Dawnmist]

I've been having progressively deteriorating small fibre neuropathy, that has over the last 5 months finally started hitting the soles/heels of my feet. A month and a half ago, I hit the point where I needed walking aides to be able to travel to/from work and not trigger severe-migraine level pain that would continue for several hours. The diagnosis of Small Fibre Neuropathy was confirmed via the only test that the Australian Health department considered necessary to provide - the Qualitative Sensory Test. Objective (instead of Subjective) tests were viewed as too complex/requiring too much skill to prepare and analyse for a condition where (and I quote) "there are no studies demonstrating that there is any benefit to the patient to be able to confirm a diagnosis of Small Fibre Neuropathy".

So the outdated subjective sensory test where they check whether you can feel cold/vibration is all there is.

It has already damaged my hands badly enough that they are unusable at all without nerve pain medication. Even with pain medication I've had to make adjustments and find work-arounds for remaining issues that will trigger off severe pain, and there are activities I simply cannot do anymore (like use a computer mouse, hold things for more than a couple of minutes - e.g. when shopping, put pressure/weight through my palms, etc). Because of that, I cannot use a walking stick...and I cannot use most crutches. I also won't be able to use a manual wheelchair if the damage to my feet continues until I hit that point. I cannot put sustained pressure/weight through the palms of my hands.

I found a type of crutch that lets me use my elbows/forearms to transfer weight through, so from the beginning of August I've been using those to get to/from work. Even with those, I've already had one day where every time I had to stand to go to the ladies pain would shoot back up to 7/8 out of 10 (migraine levels). Seated it'd drop back to a slightly more manageable 5/6. I'm working with my Pain Management specialist as much as possible, and we've been testing another pain medication slowly titrating the dosage up...and that seems to have pulled me back from the "almost needing a wheelchair" point to just in pain point again.

In mid June, my Rheumatologist wanted to try to stabilise the nerve damage, and (due to funding issues with the health care system here) sent me to another Rheumatologist with one of the main teaching hospitals who also works with the hospital's Lupus clinic in the hope that I could get access to Rituxan.

While waiting for that appointment, I've still been plugging away with Plaquenil, Celebrex, and pain medications only. Pretty much Plaquenil is the only thing that is an attempt to modify the immune attack on the nerves. Nothing else has yet been tried...no methotrexate, no other immune suppressants like Cellcept or Imuran, not even prednisone. Just pain management.

I had that appointment yesterday. The verdict: because my ESR was not high (when it was tested 18 months ago), and there is no major organ damage, there is no Objective evidence that Sjogren's was doing anything at all to me. She then proceeded to scold me telling me that I couldn't keep simply adding more and more pain medication, and should look into non-medication ways to deal with pain. And that she doubted that Plaquenil could be doing anything at all to help me so I should stop it. She implied (though didn't actually say) that I was making the whole thing up to get access to pain meds.

I've spent 23 of the last 25 years dealing with pain and fatigue without medication, because it took 22.5 years before my GP thought that maybe he should check whether there was anything autoimmune happening. The fact that it took him so long to check also counted against me...if there was something really wrong I would have been diagnosed earlier.

I've just completed an online Chronic Pain Management course run by Maquarrie University here - and every skill/technique covered in the course was one I'd already been using for at least 20 years.

She's run another full set of blood tests, but basically told me that if they do not show a high ESR now I should stop all Sjogren's treatment as there is absolutely nothing to treat. She held the test result in her hands confirming the loss of cold/vibration sensation consistent with length-dependent small fibre nerve damage, commented on something else on the result sheet, then told me that since there was no objective evidence there was nothing there. Evidence I cannot supply her in Australia because there is no objective test available here to confirm small fibre nerve damage.

[Kathy57]

Dawnmist,

Wow!  Talk about "Catch 22!"  I think you are being treated so unfairly!!  I've had doctors treat me badly but I had the option of ditching them and finding another.

I think it's ridiculous that they won't test you for small fiber neuropathy.  Doesn't say much about your healthcare system!  Do you have any means of getting another opinion?  Never give up!  Do you have a patient advocate?  You need someone who can go to bat for you. 

Even a family member.  I'm sorry that you are being ignored and your pain is not being acknowledged as real.  That really ticks me off.  I wish I could go to the doctor with you!!  Can you take a friend or family member with you the next doctor appointment?

Hang in there.

Kathy

[Dawnmist]

My husband did go with me...and was just as disbelieving and dismayed by the appointment. His opinion was that she had made up her mind before even entering the room.

And it's not so much a problem of not allowing me to be tested, as simply not supporting/providing the only test that would have been able to give her objective proof (a skin punch biopsy, where they process the sample in a way that dyes the nerves and physically count the number of nerves left in a millimeter of skin) instead of subjective proof.

[warmwaters]

I'm so sorry to hear what you're going through.

I don't understand why the doctor is taking ESR as a relevant measure for Sjogren's. It's not part of the diagnostic criteria for Sjogren's. Many people with Sjogren's don't have an elevated ESR.

http://www.sjogrens.org/home/research-programs/healthcare-providers/diagnosis-criteria

BTW, these criteria are for diagnosing Sjogren's for people who may participate in medical studies. Many doctors use a lower standard in actual care. 

I don't know your medical system, but to ask the obvious questions: can you see someone else, or appeal, or in some way get around this person who isn't being helpful?

I grumble and mutter under my breath at her on your behalf!

[irish]

In the states we often use IVIG for nerve issues. Sometimes there are to be special circumstances letters (I don't know what the legal name would be) written by the doctors and submitted to the board that oversees the use of IVIG in this country. It would be nice if you could see an immunologist who might be able to be more proactive about your issues. I have never had an elevated sed rate in all the years I have been ill. Some of us never do. The doctors get too hung up on blood work sometimes. They should be treating the symptoms. Good luck and keep us updated on how you are doing. Irish

[Dawnmist]

Thank you for your support.

I did at least ring my existing Rheumy's office when I got home from the appointment yesterday - he isn't there on Mondays, but I thought I could at least ask for an appointment with him again as soon as possible. The clinic reception asked what had happened, and I gave them a description of what my Rheumy had sent me there for, and what had actually happened. They then said that it sounded like something that needed to be passed on to him as soon as possible rather than having to wait for an appointment, so they would pass the word on and get him to give me a call today to discuss what I should do next.

I got a phone call back from the clinic reception today. He is exceedingly unhappy with what happened at the appointment, is going to talk to them in person and set the record straight the next time he is working from the same hospital (I know he is there on Fridays, but I don't know whether he is there on Wed too - he's at the clinic I've been seeing him on Tues/Thurs). Then he'll give me a call.

Warmwaters - she basically said that ESR was a measure of inflammation, and that without some externally visible objective measure of inflammatory activity from the Sjogren's, it wasn't active. I'm positive for all of ANA, SSA, SSB, and the second form of Ro, so she could not say there was no indication that I had Sjogren's. But her argument was that if there was no inflammation as measured by the Sed rate and no "major organ damage", there was clearly nothing needing immune suppression or modification type treatments and their risks. And proceeded to abuse me for being there in hope of one of the more expensive treatments, when there was clearly nothing needing treatment anyway.

Irish - IVIG is pretty much limited to life-saving treatments here. Myasthenia Gravis qualifies...Sjogren's doesn't (except in "extreme circumstances" - which seems to be things like when it causes heart/lung damage). Most neuropathies are actually explicitly listed as not qualifying/not recommended at all. From what I've read, we actually have to import some IVIG in order to meet the needs of those who are approved for it - so I can understand why it is limited to the people who can benefit the most from it, and can agree with that decision even though it leaves me out. As for blood work - definitely. My Rheumy decided that Plaquenil was appropriate to try when Celebrex had proven that the tendon pain and muscle fatigue I got were eliminated by anti-inflammatories and thus were not caused by fibromyalgia. If the "test of the pudding is in the eating", that pretty much proved that despite unremarkable inflammatory measures (CRP up a bit, SED not) a significant portion of my pain/fatigue was inflammatory by nature. So did the fact that I've had between 2-6 bouts of tendonitis or bursitis or plantar fasciitis per year since I was about 16 (unexplained - unless decided it was just posture/laziness/etc) - and every single time that my GP actually bothered to send me for an ultrasound to check on it, the inflammation was identified & verified by that ultrasound. I must admit that after 20 years of having "hot sparks" in my shoulderblade tendons non-stop, it is still a wonder to me for those sparks to be simply gone now.

All I can do is hope that he can sort things out...and that I don't now need to wait another 3 months for a replacement appointment. I'm struggling badly enough now, and the changes from the SFN have been rapid and relentless. I cannot help fearing that I'll hit the limit with what my Pain specialist can help with soon, and at the moment I'm on the cusp of not being able to get to work via public transport if I need to walk a little already.

And the only "treatment" that really works for SFN is "find the cause...and treat that". Is it mad, that I almost wish the SFN was caused by being a coeliac or a diabetic/pre-diabetic instead...because then I could have some capacity to treat the cause of the damage myself by diet alone, and not have to risk relying absolutely on the whims of "special"ists like her?

[Carolina]

I always advise finding doctors at a major University Medical Center.  Read their resumes.  Where they went to medical school, did their residency, and fellowship is important.  Their areas of interest are also important.

There are few really competent caring doctors skilled enough to deal with our Immune Disorders.

You are at your wit's end, Dawn.

For NONE of my myriad conditions has 'find the CAUSE, treat the CAUSE' worked.  I have only been able to treat the symptoms.  For me the cause is a completely disordered Immune System which has attacked me for 74 years.  Now I am deteriorating due to that attack over so many years.

This is your path, and sometimes we rage against our path, but our rage only hurts ourselves.

We need Patience, Persistence, and Acceptance.   And humor 

My amazing Immunologist says:  We use the tests we have, not the tests we need.

The same thing applies to treatments and medications, Dawn.

You are bright, you are motivated, and are at your wit's end.   I'm so sorry.

We are here for you.   

Hugs,  Elaine

[lorigacc]

We are all here for you and understand.  My sed rate has always been elevated...and the doctors still don't believe half of what I tell them.  It drives me nuts when others act like I am making things up.....seriously....who would want this for themselves.  Hang in there, we care.

[warmwaters]

Just FYI, my ESR is usually normal range unless I have an infection, but I've still got Sjogren's and my rheumy still treats it. I've had nerve damage, so it's pretty clear that it's "active" even without an elevated ESR.

Glad you're making some progress on making the system work.

[Dawnmist]

I've had one result a few years ago when I had a serious inflammatory attack on the area around the right Sacroilliac joints where I had an elevated ESR (mind you, that's also the only time I ever had a blood test while having an inflammatory issue), but otherwise it has been low/none. CRP has usually been a little elevated - but not high enough to indicate viral/bacterial infection.

My rheumy was also treating based on symptoms/experiential evidence. He had no problem using the results of the test that confirmed length dependent small fiber neuropathy, or the Neurologist's formal diagnosis of the same. That's why he'd sent me on to try to get Rituxan in the first place!

It was only if that test result, and Neurologist's diagnosis based on those test results, were excluded from my diagnostic picture that left things "without evidence" of anything much occurring. And the only reason she thought she could get away with it was because the test is a subjective one - they ask you "can you feel this...this...this...", with random order to the actual intensity of change. And the only reason I can see for excluding a subjective test is if you've pre-judged the patient as dishonest. And using her own words, she had "no objective evidence" that I'd lied at any time. The fact that it was the only test available was flat out ignored.

I'm aware that ESR is a measure of a side effect of inflammation, and not a direct measure in and of itself, which is part of why I was so shocked that the consulting Rheumy insisted that if it wasn't positive there was no inflammation and no disease activity. I'm also aware that not all types of inflammation will cause it to be elevated - the clinic where my Gynaecologist works at published a study earlier this year where they had discovered another indicator that gets elevated due to hormonally-created inflammation that doesn't register in the Sed rate, but was highly reactive and predictive of the levels of pain those hormonal changes were creating for the person affected.

I did ring and request the name of the person I saw, so that I can put in a formal complaint over her behaviour in the appointment. Other than that, I'm still waiting for word from my Rheumy about what the next step should be (I don't really expect to hear back until late Fri afternoon). I'm now more angry about what happened and less discouraged than I was since my Rheumy is going to try to sort it out, but waiting in limbo is hard.

[irish]

I am so glad that you had your husband with you. The doctors sometimes back down when confronted about their professional behavior when they remember there was another person in the room. So good to take someone with you. Good luck to you with this. We sure support you and are anxious to hear that this goes well for you. Irish

[aussie mum]

Dawnmist, I can't believe what you've been through. Glad your Rheumy is going to try and sort things out for you.

As another Aussie, I'm wondering which hospital treated you so badly 

[Dawnmist]

Aussie mum: Monash Medical Centre, Outpatient Clinic, Clayton, Vic.

Turns out the person who did that is the head of the Lupus clinic there. So I suspect that I'm not going to get anywhere with that hospital even if my Rheumy does manage to sort things out.

I did speak with my Rheumy yesterday. He won't have a chance to talk with them until Monday, but he wanted to know what I felt had happened at the appointment. He was absolutely appalled at some of what she had said, and kept apologising to me for the treatment I'd received - and I kept trying to say that I knew that he had been trying to do his best for me and wasn't at all to blame for someone else's behaviour.

I also let him know that the Resident that I started the appointment with had sat quietly in the background and witnessed the appointment, and the name of that Resident. My rheumy is keen to talk with the Resident too - it gives him a chance to get a view from me, from her, and from an observer - which if the Resident actually does tell him what happened honestly (as I hope he will) will cut through the "her word against mine" type issue. He will then give me a call back to discuss what to do from there.

My husband wishes he'd thought to take an audio (or video) recording of the appointment for evidence.

[aussie mum]

I'm from Sydney Dawnmist, but I've heard of Monash. Isn't that one of your top hospitals??

Sadly, life experience has shown me that the arrogance of some doctors is often far greater than their ability.

I hope your Rheumy gets some answers or can refer you on to another Dr who can help you.

[irish]

I love what you said Aussie mum about the doctors arrogance in relation to their ability. Irish