Worth keeping immunologist appointment?

[outdamnspot]

I have an appointment booked for next week with an immunologist who came highly recommended via a Facebook group for Australian doctors. The thing is, most of the people in the group deal with stuff like MCAS, allergies, POTS etc. -- which I do have symptoms of to an extent -- but I'm less interested in symptom management at this point and would rather try and rule out other potential conditions, since I seem to only be deteriorating lately. When I posted in the group and tried to get further answers about the exact screenings he did etc., no one who had seen him ended up replying, and I also couldn't find any accounts by anyone who has CFS/ME.

So, I was just wondering if an immunologist could be the right avenue; I haven't seen one during the 4 years I've been severely ill. My GP did an autoimmune screening a few months ago and my ANA and ENA came back negative, though I was positive for one antibody (anti-smooth muscle) which she said was meaningless in the context of my other results. A short bio for the immunologist in question (Dr Jeremy McComish in Melbourne) said he did have a specialized interest in autoimmune conditions, but I'm wondering if a negative ENA/ANA definitively rules that out. I also don't think I've ever had stuff like Igg numbers etc. checked.

One woman on reddit said she saw him via the hospital allergy clinic and she felt he neglected her CFS symptoms in favor of allergy screenings, but I don't know if seeing him privately would make a difference?

Anyway, I guess I'm confused over whether immunologists are more helpful for allergy screenings and MCAS-type stuff or if they can be helpful for CFS. Unfortunately, it's too late to cancel the appointment without being charged and my parents are putting pressure on me over the cost.

 

[maybe some day]

I'm in the states so things might be different compared to where you are. But I saw an immunologist. It didn't go very far as they will do a few more tests than the general practitioner will. But the bottom line is that there is no treatment for this illness. So they may just do a few more tests to rule out a few things. But for me there was no benefit in going.

My GP told me that when they started seeing CFS patients coming through the door, they had them see an immunologist. When they couldn't find anything, they told the patient to go back to GP. So it's a revolving door with no answers.

Again your mileage may vary, but I consider this an illness as something Western medicine just has no clue what to do

 

[Lieselotte]

Your doctor might be different, but my immunologist appointment was not helpful. I do have autoimmune conditions (hashimoto's, celiac), don't have MCAS or POTS or [IgE] allergies.

At the appointment he basically ran some tests to see if I was IgG deficient, and told me if they came back normal, I didn't have to see him again because he can't do anything for me. He didn't ask or do any other testing autoimmune-wise (I haven't had much done besides the bare basics, so I thought he might).

There wasn't a follow-up appointment, so that tells you how that went. Thank you, next!

If it doesn't cost you a lot of money or wear you out in terms of travel, etc. I guess it couldn't hurt to go see him?

 

[i-lava-u]

nfortunately, it's too late to cancel the appointment without being charged and my parents are putting pressure on me over the cost.

In that case, it wouldn't hurt to go? You never know, what you may or may get from the appointment, unless you give it a shot.

 

[andyguitar]

Yeah worth going to as the Doc might be able to help.

 

[BeADocToGoTo1]

Worth the peace of mind in ruling out autoimmune issues.

 

[Rufous McKinney]

Anyway, I guess I'm confused over whether immunologists are more helpful for allergy screenings and MCAS-type stuff or if they can be helpful for CFS.

I could sure use more help in this arena: called- what type of specialist deals with what types of things.

So my attempt at : make an appointment with the convenient immunologist/allergist...was a complete fail, they called back and cancelled.

One health expert told me of course, an immunologist would not. be interested in my ME. They are working with organ transplant patients . (I left the room decided that was ridiculous).

So: could not even talk to one. NEXT!

 

[manasi12]

@outdamnspot..did u finally go ?

 

[outdamnspot]

Sorry for not updating. I was (and still am) in a severe crash and couldn't attend, unfortunately. Thankfully there was a little leeway and I was able to cancel by leaving a message very early the day before. I am wondering if my GP could just run the IgG testing that @Lieselotte mentions?

 

[manasi12]

Ok

Sorry for not updating. I was (and still am) in a severe crash and couldn't attend, unfortunately. Thankfully there was a little leeway and I was able to cancel by leaving a message very early the day before. I am wondering if my GP could just run the IgG testing that @Lieselotte mentions?

Ok ..take care

 

[Lieselotte]

@outdamnspot I want to say your GP wouldn't run those tests, but you could always ask!