Sorry to hear what you’re going through - your situation seems really similar to mine (however I’m IgG Lambda, low IgA per the BMB/A in august 2021, which was 8%), with very similar symptoms that I initially went to the doc for.
Once they found MGUS, they stopped proactive searching for treatments and said MGUS doesn’t give symptoms so these aren’t attributable to it.
Now, I have chronic brain inflammation (per mri), chronic kidney disease (eGFR 49), and I’ve started to lose feeling and muscle strength in my legs (neurologist yesterday told me he won’t discuss it till the next appointment - but this is totally normal in the Au public system..he’s been the neurologist in charge since early this year, and it’s now September, I have significantly advancing symptoms, and he asked me yesterday: who is your neurologist?? I said “you are - have you had a dementia assessment to confirm you can practice ethically? I have seen you multiple times, and each time you simply log that you’ve seen me, for claiming the expenses, and now you again ask me who my neurologist is and tell me you’ll start investigating at the next appointment in another 6 months?”. He responded with “I don’t remember you - I will need to review your file before I start”. So, like the cruelest Groundhog Day, this is my esteemed neurologist at his finest, courtesy my taxes and the taxes of the rest of the country. Never mind the gaslighting of: you could’ve done something to yourself - we don’t know what you do to yourself at home, maybe you do things that caused these symptoms.
As you can imagine, it’s like paying for emotional trauma from a person in a position of power, using illness to punish people. And when I mentioned (again) I’m alone, having multiple falls per week, and have zero support, I was ridiculed by his assistant “surely nobody has nobody!” with a snort of laughter, so of course there’s zero point in trying to put forward a case of urgency for help to either figure out what’s wrong, or ask them to sign off on community support.
So, I’m back at square one, while I progressively lose strength and feeling in my legs.
We have nowhere like Mayo that is accessible publicly (it’s thousands to have private consultations and investigations), so I’m having advancement of symptoms - I used to have a really high heart rate, now, it sits around 25-40 bpm. I had an echo, showing the heart muscle still looks normal with an acceptable ejection fraction, however I’m now on a heart drug to facilitate pulse rate/electrical activity so it doesn’t just stop unexpectedly.
I’m now on long term penecillin V and trimethoprim because the night sweats and fevers were waking me with what I thought I’d symptoms of seizures (unable to move/tremors, visual disturbance, and unable to speak for an hour or so after one of these events which were happening several times per night), because that’s all I could get out of the doctor; and now, they’re even questioning if I have MGUS (despite the bone marrow objective evidence), and telling me I just have some kind of long term ‘infection’. My take on that is: being low in both functional IgG and IgA, it’s feasible that due to MGUS I do have long term infection, but that doesn’t mean I don’t have MGUS, kidney failure/ckd from MGUS, or that it isn’t potentially active and moving toward SMM considering the symptoms. I’m saying that, the reply is “stop blowing things out of proportion - you’re always ‘FIXATED’ on your illness! I’m sure if you relaxed you wouldn’t have half the problems you have!”
Wow, is all I can ever say.
That’s what you get for trying to seek help for functional and systemic deterioration.
Ranting, I know, but who wouldn’t when you’re treated like trash.
I don’t know if you’ve heard the recent handing down of findings Disability Royal Commission in Au, where the appalling conditions for people with severe disability have had their situations discussed by the Commission, however that doesn’t take into account all the rest of us living with disability and how the system does not support us (just want to acknowledge the loss and suffering of all those at the hands of the system, I hope the DRC findings are in fact acted upon - there’s no mandate to do so, and unfortunately as with most royal commissions into public affairs/systems in Au, they cost millions and nothing at all is implemented after it is ‘discussed’ by govt).
So presently, I’m getting worse, more loss of function, and lots of my time being taken up by visiting people with medical degrees who operate outside of their specialty in their proficiency to reject, deflect, and ignore illnesses for the purpose of perpetuating appointment after appointment to keep their job relevant and the salary rolling in (the pay is exceptionally good).
Oh, different topic, but good news: I’ve been having bleeding from my intestines/stomach (tests confirmed), and I have finally won the battle to have a colonoscopy in the public system. I had been rejected by the NSW local health district for the procedure because I have no next of kin, and their policy is that people without next of kin are not permitted to have sedation or anaesthesia because they mandate a next of kin to be available once the patient wakes up. Because of this, I was told by senior administration that I am to be immediately removed from access to the procedure. I argued from three points: discrimination, human rights, and neglect (you can’t discriminate against a person from accessing medical care because of their marital or family status (Disability Discrimination Act 1992), the UN Universal Declaration of Human Rights (Articles 5, 7, 16, 25), and neglect with reference to AHPRA regulations), and after some consideration, as well as asking the doctor to say the procedure was medically necessary (not sure how administrators could interpret bleeding in intestines as non-necessary, but i digress), I have finally confirmed I will be able to have a colonoscopy.
This is why so many people don’t have appropriate care: much of your circumstance is used against you to exclude you from the ‘policies and procedures of the hospital to keep the hospital safe’ aka: minimise their insurance policy premiums by excluding perceived risks (which, by the way, are people needing care).
🌺