Are immunologists helpful?

[outdamnspot]

As a last-ditch attempt at getting some help (or even just closure), I emailed Emerge (a CFS organization in Australia) and asked if they have a recommended doctor list. They said they do and will forward it to me soon. I've been wondering for a long time whether my disease may be autoimmune in nature (it runs in my family); I did have an ANA and ESR which were normal, but @Gingergrrl said these weren't really definitive tests, and I was hoping to find a doctor who might be willing to at least try rule the possibility out. The last GP I saw was sympathetic about the severity of my CFS, but refused to refer me onto a specialist like a rheumatologist or immunologist; I feel like I'm living in a bizarro world where I'm near-death at times and have to beg for basic medical assessments, even though I would be paying privately to see a specialist.

Anyway, are immunologists actually helpful for this sort of thing? If one has been at the 'severe' level for several years and only declining, would it be worth seeing one?

 

[Gingergrrl]

I did have an ANA and ESR which were normal, but @Gingergrrl said these weren't really definitive tests

I'm not sure if what I said made sense and wanted to clarify. What I meant was that ANA or ESR are not tests for a specific disease. An elevated ANA detects that there is some kind of autoimmunity going on but does not tell you specifically what it is. My understanding of elevated ESR is that some kind of infection or inflammation is there but also does not tell you what or where it is.

My ANA is elevated but my ESR is normal (and usually around "6"). I really hope you can get the referrals you need to have further testing (more specific tests). To answer your main question, in my experience, immunologists were helpful (my MCAS specialist is an allergist/immunologist and he prescribed the IVIG which was life-changing for me).

 

[outdamnspot]

I'm not sure if what I said made sense and wanted to clarify. What I meant was that ANA or ESR are not tests for a specific disease. An elevated ANA detects that there is some kind of autoimmunity going on but does not tell you specifically what it is. My understanding of elevated ESR is that some kind of infection or inflammation is there but also does not tell you what or where it is.

My ANA is elevated but my ESR is normal (and usually around "6"). I really hope you can get the referrals you need to have further testing (more specific tests). To answer your main question, in my experience, immunologists were helpful (my MCAS specialist is an allergist/immunologist and he prescribed the IVIG which was life-changing for me).

I'm sorry for misunderstanding. I thought you were saying a normal ANA and ESR could not rule out the possibility of autoimmune disease; mine were in range, so perhaps it's not the right avenue to pursue.

 

[Gingergrrl]

I'm sorry for misunderstanding. I thought you were saying a normal ANA and ESR could not rule out the possibility of autoimmune disease; mine were in range, so perhaps it's not the right avenue to pursue.

I'm really not sure and definitely would not want to steer you wrong! I think it would be good to consult with an immunologist (or other doctor) for clarification.

 

[Wishful]

My experiences with several immunologists (one was also a rheumatologist) were very disappointing. At the time I thought I just had standard type IV food sensitivities, but all of them immediately responded with 'Sorry, I only deal with type I.' None bothered to do any tests to rule out other immune disorders. Also, even though I told the receptionist that I didn't want to bother with an appointment if the doctor didn't deal with type IV, the receptionist apparently didn't bother asking the doctor that question; just booked the appointment.

 

[kangaSue]

I'm sorry for misunderstanding. I thought you were saying a normal ANA and ESR could not rule out the possibility of autoimmune disease; mine were in range, so perhaps it's not the right avenue to pursue.

You were correct the first time, a normal ANA and ESR does NOT rule out the possibility of autoimmune disease. All it rules out is that what you might have doesn't have a significant inflammatory element to it or the condition waxes and wanes as far as inflammation is concerned and wasn't there when you tested.

If you have signs or symptoms of autonomic dysfunction, I'd still be pushing a G.P. to run at least an ENA panel. I was negative to all these but ended up being diagnosed with Autonomic Neuropathy (AN) in checking out severe GI dysmotility issues so was referred to a Immunologist (as a public hospital patient) too and they run 20 different tests as a matter of course going on the symptoms I had (mostly GI dysmotility and AN related) to see if there was an underlying autoimmune condition involved.

 

[outdamnspot]

You were correct the first time, a normal ANA and ESR does NOT rule out the possibility of autoimmune disease. All it rules out is that what you might have doesn't have a significant inflammatory element to it or the condition waxes and wanes as far as inflammation is concerned and wasn't there when you tested.

If you have signs or symptoms of autonomic dysfunction, I'd still be pushing a G.P. to run at least an ENA panel. I was negative to all these but ended up being diagnosed with Autonomic Neuropathy (AN) in checking out severe GI dysmotility issues so was referred to a Immunologist (as a public hospital patient) too and they run 20 different tests as a matter of course going on the symptoms I had (mostly GI dysmotility and AN related) to see if there was an underlying autoimmune condition involved.

Interesting, thank you. I take high doses of vitamin C to quell inflammation, which helps, and had actually taken time-release vitamin C prior to the ANA/ESR test, so wonder if it may have influenced things. I'm still waiting for the list from Emerge, but hopefully I can find a conducive doctor; I wouldn't even bother bringing up something like dysautonomia with the GPs I've seen so far.

 

[kangaSue]

Interesting, thank you. I take high doses of vitamin C to quell inflammation, which helps, and had actually taken time-release vitamin C prior to the ANA/ESR test, so wonder if it may have influenced things. I'm still waiting for the list from Emerge, but hopefully I can find a conducive doctor; I wouldn't even bother bringing up something like dysautonomia with the GPs I've seen so far.

Sad fact of life is that your quality of medical care starts with, and depends on, having a good relationship with a G.P. from the outset and if you don't have that, it's always going to be an uphill battle.

They are still going to defer to a specialist for many things though and it took a fair bit of prompting on my part over many months to get the GI to finally order some autonomic function tests. It was only a moral victory but priceless to see the look on their face when the report came back and they had to take back their prior assertions that there was no indication of other autonomic dysfunction going on.