General Medical issues thread

[prozac]

the diagnosis not official

This simple statement is the nub of my discussion with Allianz… when is it a pre existing condition ?
Well worth an article ; in summary the way they describe pre existing condition disclosure in the sales brochure can suddenly become very complex and subject all sorts of word games at claim time … caveat emptor

I guess when your GP writes it in his notes.

 

[JohnK]

So drron's number 1 travel tip. Do it when you can and don't put it off.

Unfortunately for most life does not leave much time for travel while working and kids growing up.

I'm not yet 60 years old and struggling. This is the worst I have ever been on any trip. Struggling to walk from Beach Road to Soi Buakhow last night. Had to stop 3-4 times and sit for a few minutes each time. It's not even 1km.

I don't know what this means for any future plans. We'll have to wait and see.

 

[Seat0B]

So drron's number 1 travel tip. Do it when you can and don't put it off.

Such sound advice. I was all set to take it up (I'm only 62) when I sold my business in 2017. Had a couple of grand years in 2018 and 2019 and then....we all know what happened to 2020-2021 (several trips booked for 2020 cancelled and refunds fought). Travelled again at the end of 2022, had Japan locked in for 5 weeks in Jan/Feb 2023, and looking at other trips - maybe Korea, visit to Seat Son etc. And as followers on AFF know, just a few weeks before my shock diagnosis, I was deep in the throes of planning a cruise to the northern lights for the 120 years of marriage celebration (hubby and I and his 2 sisters and their hubbies all hit 40 years in 2024). So I was trying hard to honour this advice. But it hasn't worked out for me - so far.

Hence my interest in insurance. I fully anticipate that I will have a decent remission after this all settles down and I really want to be able to travel, but now I am worried about the impact of this medical situation on my ability to get insurance at all, and then what the premiums will be.

Edit for spelling

 

[Seat0B]

And for those who were wondering about how bad the blotches were, here's a photo from April this year. GP said "oh you're getting older and the elderly bruise easily". I'm 62! And at that time I was only 59. Dermatologist a year or two earlier said "it's probably a side effect of your asthma puffer". Nephrologist said "well aren't you a delicate little flower." Gastroenterologist said "colonoscopy all clear, but what the hell is happening with those blotches on your arms????" I owe him a decent bottle of red wine when I'm out and about that's for sure. Haematologist said "Hmm, your blood work is bad but not terrible. However your physical symptoms (the blotches and rib pain) are more severe than they should be with those numbers, so I want to really track this down." Next thing I know every pathologist in Canberra and a few in Sydney are reviewing my samples, and hey presto - hairy cell leukaemia. Bone marrow biopsy trephine results suggest I've had it for several years....

 

[SuePa]

And for those who were wondering about how bad the blotches were, here's a photo from April this year. GP said "oh you're getting older and the elderly bruise easily". I'm 62! And at that time I was only 59. Dermatologist a year or two earlier said "it's probably a side effect of your asthma puffer". Nephrologist said "well aren't you a delicate little flower." Gastroenterologist said "colonoscopy all clear, but what the hell is happening with those blotches on your arms????" I owe him a decent bottle of red wine when I'm out and about that's for sure. Haematologist said "Hmm, your blood work is bad but not terrible. However your physical symptoms (the blotches and rib pain) are more severe than they should be with those numbers, so I want to really track this down." Next thing I know every pathologist in Canberra and a few in Sydney are reviewing my samples, and hey presto - hairy cell leukaemia. Bone marrow biopsy trephine results suggest I've had it for several years....



View attachment 344681

Those responses are frustrating and disrespectful!
I'm sure you know, a positive attitude can make all the difference and you seem to have that.
All the best for future travels.

 

[Pushka]

the diagnosis not official

This simple statement is the nub of my discussion with Allianz… when is it a pre existing condition ?
Well worth an article ; in summary the way they describe pre existing condition disclosure in the sales brochure can suddenly become very complex and subject all sorts of word games at claim time … caveat emptor

Agree. And it’s also relevant as to when first symptoms were noted. In my case I developed a DVT four months prior to travel to USA. We didn’t feel we should go but the insurance company said that as it was a new condition not pre existing then I would be covered in the US and they wouldn’t pay out for cancellation . Fortunately in this instance our credit card insurance kicked in.

@drron - did you suspect the diagnosis? You’ve always been rather excellent at diagnosing stuff for me.

 

[Quickstatus]

So drron's number 1 travel tip. Do it when you can and don't put it off.

Sounds like a prescription....

I guess when your GP writes it in his notes.

They can also ask you for permission to look at your medicare claims
I have a friend who does not give her medicare card when she has her bone density scan done and her GP visits are non medicare as well. dont think it helps but...

 

[prozac]

Agree. And it’s also relevant as to when first symptoms were noted. In my case I developed a DVT four months prior to travel to USA. We didn’t feel we should go but the insurance company said that as it was a new condition not pre existing then I would be covered in the US and they wouldn’t pay out for cancellation . Fortunately in this instance our credit card insurance kicked in.

@drron - did you suspect the diagnosis? You’ve always been rather excellent at diagnosing stuff for me.

The irony is if I had traveled last year pre-diagnosis then no probs, but I had an aggressive cancer then. Life is full of twists and turns.
I might do a dummy quote now to see if I need to start saving.

 

[Seat0B]

Those responses are frustrating and disrespectful!
I'm sure you know, a positive attitude can make all the difference and you seem to have that.
All the best for future travels.

Yes do NOT be sick with anything slightly left of centre whilst also being a middle aged woman, that’s for sure. I was really dismissed and made to feel like a hypochondriac. So much so that I actually gave up pursing an answer for the whole of 2022. I’m quite well informed and not at all shy, but I was still put back in my box.

the lesson I’ve learnt is to simply refuse to let them bulldoze me. If I want a blood test in the future, I am just going to insist on having it. I’ll use the argument of what do they have to lose, and quote the downside TO ME NOT THEM if they are wrong and I did need the test. Not that I’m keen for more blood tests at the moment! I’m currently on the rocket Rule 3 exemption fast track to “P1 of blood tests” - so who know, maybe I will get addicted to the VIP treatment and want more in the future

Post automatically merged: Sep 21, 2023

Those responses are frustrating and disrespectful!
I'm sure you know, a positive attitude can make all the difference and you seem to have that.
All the best for future travels.

And thanks for your kind encouragement

edit for typo

 

[Pushka]

Yes do NOT be sick with anything slightly left of centre whilst also being a middle aged woman, that’s for sure. I was really dismissed and made to feel like a hypochondriac. So much so that I actually gave up pursing an answer for the whole of 2022. I’m quite well informed and not at all shy, but I was still put back in my box.

the lesson I’ve learnt is to simply refuse to let them bulldoze me. If I want a blood test in the future, I am just going to insist on having it. I’ll use the argument of what do they have to lose, and quote the downside TO ME NOT THEM if they are wrong and I did need the test. Not that I’m keen for more blood tests at the moment! I’m currently on the rocket Rule 3 exemption fast track to “P1 of blood tests” - so who know, maybe I will get addicted to the VIP treatment and want more in the future

Post automatically merged: Sep 21, 2023

And thanks for your kind encouragement

edit for typo

You are always your own best advocate. Never forget that. I have a Rule 3 exemption too. I found out annoyingly they only last for 6 months and at just over 6 months the lab wouldn't do the test. Not happy Jan.

 

[Seat0B]

Is it the Rituximab that causes hair loss @k_sheep ?

I'm not sure, but the care team told me that "hair thinning" is common with Cladribine, which is the first line treatment. I asked what that meant and the lovely nurse said "well some people have no effects, some people lose hair but not all of it - just looks like a bad comb over, and some pretty much lose the lot." Seems it's very individual how people react to the Cladribine.

If this course of Cladribine does not work or if I relapse in a short period of time, the next treatment is Cladribine and Rituximab together. Hope I don't get to sample that little coughtail!

 

[Seat0B]

B

Try insureandgo. For a premium they cover all my whacky things.

Just looked at their web site and they do say all pre-existing conditions considered, so that's a big positive. Have to do the medical assessment to get a definite answer of course, which is fair enough. I think I'll wait to see if I get a good remission because I think "cancer in remission" might be more palatable to an insurer than just "cancer".

So thanks for the tip.

 

[Pushka]

Just looked at their web site and they do say all pre-existing conditions considered, so that's a big positive. Have to do the medical assessment to get a definite answer of course, which is fair enough. I think I'll wait to see if I get a good remission because I think "cancer in remission" might be more palatable to an insurer than just "cancer".

So thanks for the tip.

Yes, they do ask recent hospital stays etc. If you do a dummy it's all AI assessed online so no harm done in trying to see what they ask. It doesn't 'go' anywhere.

 

[drron]

Agree. And it’s also relevant as to when first symptoms were noted. In my case I developed a DVT four months prior to travel to USA. We didn’t feel we should go but the insurance company said that as it was a new condition not pre existing then I would be covered in the US and they wouldn’t pay out for cancellation . Fortunately in this instance our credit card insurance kicked in.

@drron - did you suspect the diagnosis? You’ve always been rather excellent at diagnosing stuff for me.

Yes I have been thinking it has been a Neuromuscular condition for the last couple of years. However the wish to travel was first. Then in January this year I asked my GP for another neurology opinion but had to wait until yesterday for it. And being a physician I was put on a list to be called if any cancellations. No call so attended my booked appointment. Truth be told I thought at my age a possible diagnosis was MND. We physicians always overthink our own problems.

Now the neurologist thinks it is a limb girdle dystrophy. Not uncommon but it isn't meant to start past your 50s. So no firm diagnosis yet. The good news is that some of the types of this condition do affect the heart and respiratory muscles but I have had those checked back in February and all perfect. On top of that did climb Mt. Roland in January 2022 at 1234 metres. And in January 2021 climbed Ben Lomond at 1500 metres.

They say that many will end up in a wheelchair 20 - 30 years after first symptoms. Mine began 13 years ago so will have to pack a lot into the next 7 years but hope for longer.

 

[MARTINE]

Yes I have been thinking it has been a Neuromuscular condition for the last couple of years. However the wish to travel was first. Then in January this year I asked my GP for another neurology opinion but had to wait until yesterday for it. And being a physician I was put on a list to be called if any cancellations. No call so attended my booked appointment. Truth be told I thought at my age a possible diagnosis was MND. We physicians always overthink our own problems.

Now the neurologist thinks it is a limb girdle dystrophy. Not uncommon but it isn't meant to start past your 50s. So no firm diagnosis yet. The good news is that some of the types of this condition do affect the heart and respiratory muscles but I have had those checked back in February and all perfect. On top of that did climb Mt. Roland in January 2022 at 1234 metres. And in January 2021 climbed Ben Lomond at 1500 metres.

They say that many will end up in a wheelchair 20 - 30 years after first symptoms. Mine began 13 years ago so will have to pack a lot into the next 7 years but hope for longer.

Im sure you know this @drron but Avant cover preexisting conditions and retired doctors till age 80.
Great advice re travel with which I concur
Its s great prescription - Fun X Funds
All the very best for your health and future travels

 

[love_the_life]

Never used them as haven't needed the conditions covered and I understand they are quite expensive but have heard that AllClear travel insurance do cover almost all medical conditions.

 

[JohnK]

Assuming the only treatment is to lose weight and some sort of medication daily or cortisone injections is it worth getting every single pain/condition diagnosed?

Played golf today and a new one that I do not remember experiencing in the past. My right heel almost gave way more than a dozen times. Scary thought. Some sort of tendonitis?

I had 20mg prednisolone last night and 2 panadeine forte before game today and still in extreme pain. Obviously that's not the right medication. So what is the right medication? That's the $64 question.

 

[k_sheep]

Is it the Rituximab that causes hair loss @k_sheep ?

Generally not. Doxorubicin is the worst for it that I see regularly.

You are not the only unusual one when it comes to the thyroid. I looked after a young woman who had a thyroidectomy for thyroid cancer followed up by I 131 so definitely hypothyroid. Yet her endocrinologists had her on only a small dose of thyroid hormone as her T3 and T4 were at the upper limits of normal. The problem was she was putting on weight, fatiqued and feeling cold all the time. She had a very active youngster. She was sent to me for unrelated reasons but I listened to her and upped her thyroid dosage. Her T4 levels were then about 10% above the normal range. but she got back to her pre thyroid normal existence. I got told off by her endocrinologist but the result of that was she never went back to him.

They didn't listen to rule 1 of laboratory medicine: treat the patient, not the number!

Thanks @k_sheep. My main symptoms were serious blotches (purpura) for no reason at all, significant rib pain and very easy bruising. Also exhausted. I could not really interest any of my GPS or a dermatologist in this over several several years of complaining. Eventually a completely unrelated gastroenterologist enquired about the blotches and ordered blood tests - and back it came with a lot of anomalies which were then diligently followed up by my haematologist to get confirmed as hairy cell.

Apparently it’s pretty rare. And luckily, slow growing. Indolent is a very good word to hear in the sentence immediately after being told you have leukaemia.

Yeah hairy cell isn't hugely common compared to CLL, DLBCL and myeloma which we've seen on this thread! It's got the coolest name though, clearly Fun fact, it's named that because the leukaemia cells have a spiky outer layer which looks kinda like Enstein hair.

We had a patient at our multidisciplinary meeting last week, who was having a relapse of their hairy cell - first diagnosed in 1979!! They had 4 bouts already, but still going strong! First treatment was interferon ... cladrabine is MUCH more effective and friendly!

 

[prozac]

Generally not. Doxorubicin is the worst for it that I see regularly.

Thanks @k_sheep . I have 2 yrs ongoing treatment with Rituximab so can expect my hair to return if I decide I don't want the Kojak look anymore. It's been nice not having to shave, no nasal hair to worry about, pubes gone is a bit weird though.

 

[JohnM]

pubes gone is a bit weird though.

Call it a Brazilian and join the throng...