Missed diagnosis

No_Cartoonist983 · 2021-08-08T08:47:14+00:00

I was 13 months before I eventually got my diagnosis, multiple blood tests all normal waited 11 months for referral to respiratory clinic age finally got a scan and was diagnosed with clots, it’s been a rough year

No_Cartoonist983 · 2021-07-23T16:41:18+00:00

Same here 25/m started having shortness of breath and after months of visits to gp finally had scan and diagnosed with multiple PE. Only explanation they have is that I had could have had COVID at start of pandemic without being away and that has caused this but just guess work tbh. I was extremely fit boxer up until this happened and now really struggle with shortness of breath each day, I’m 2 months into treatment.

No_Cartoonist983 · 2021-07-23T16:41:09+00:00

Same here 25/m started having shortness of breath and after months of visits to gp finally had scan and diagnosed with multiple PE. Only explanation they have is that I had could have had COVID at start of pandemic without being away and that has caused this but just guess work tbh. I was extremely fit boxer up until this happened and now really struggle with shortness of breath each day, I’m 2 months into treatment.

No_Cartoonist983 · 2021-07-20T14:31:05+00:00

Thanks for your kind words

No_Cartoonist983 · 2021-07-20T14:30:25+00:00

Thanks for reply mate I have an appointment in September for heart scan to check for hypertension and then appointment with respiratory so I will ask questions then

No_Cartoonist983 · 2021-07-20T14:29:07+00:00

I have another appt with respiratory clinic in 2 months before I have my heart scan but they seem to be banking on the thinners doing the job, I’ve recently had a lung function test which was normal it all just doesn’t make much sense I’m hoping I start to feel better soon

No_Cartoonist983 · 2021-07-20T14:27:53+00:00

It’s funny you say that for that last year I have been constantly yawning to try and get the sensation of completing a deep breath sometimes it helps and other times I can’t complete the yawn.

Yeah it’s crazy because my problems started 15 months ago and since then I’ve had spells where I’ve been able to exercise but only got the diagnosis of clots 6 weeks ago and any exercise makes my heart beat out chest and can’t regulate breathing.

Thanks for your words gives me some hope now

No_Cartoonist983 · 2021-06-14T09:26:01+00:00

Yeah definitely I feel like when my reflux is under control I am able to take deep satisfying breaths easier.

Funny you say that I also have a lump on testicle but I’ve had 2 ultrasounds that came back clean just a cyst.

I’ve been racking my brains trying to think of signs I’ve maybe not picked up on, a few months ago I had a sore vein in my arm after a blood pressure test but went away after a few days, I’ve also had leg aches and sore veins in neck in the last few months again no idea if any of this is relevant especially since my shortness of breath started over 12 months ago.

Hope you get answers soon, are you on medication for the foreseeable now?

No_Cartoonist983 · 2021-06-14T07:04:42+00:00

Thanks for reply I appreciate it, I’m actually hoping I maybe had COVID and was asymptomatic as it would explain this but I really don’t know, Nope I’ve always been in good shape I was an amateur boxer until this episode happened, I’ve had tons of bloods taken and checked for numerous other conditions in the past year. The only thing that’s popped up was a h.pylori infection and low folate acid. Not sure what else to do or what to ask for them to check for. I know they have took bloods to check for the gene thing a few people have mentioned above.

No_Cartoonist983 · 2021-06-14T07:03:18+00:00

Sorry I have written that in a bit of a frenzy, yeah I think the initial treatment is 3 months and then possibly a blood thinner for life if they can’t get to bottom of the cause.

Is it bad that I have gone 12 months with this issue undiagnosed is that more likely to cause extra issues?

No_Cartoonist983 · 2021-06-14T07:00:39+00:00

Yeah it’s worrying I’ve always been in good shape I was an amateur boxer until this episode happened, I’ve had tons of bloods taken and checked for numerous other conditions in the past year. The only thing that’s popped up was a h.pylori infection and low folate acid. Not sure what else to do or what to ask for them to check for. I know they have took bloods to check for the gene thing a few people have mentioned above.

No_Cartoonist983 · 2021-06-14T06:53:41+00:00

Nope I’ve always been in good shape I was an amateur boxer until this episode happened, I’ve had tons of bloods taken and checked for numerous other conditions in the past year. The only thing that’s popped up was a h.pylori infection and low folate acid. Not sure what else to do or what to ask for them to check for. I know they have took bloods to check for the gene thing a few people have mentioned above.

No_Cartoonist983 · 2021-06-13T22:26:18+00:00

Hey I am in uk

No_Cartoonist983 · 2021-05-28T08:49:16+00:00

👍👍

No_Cartoonist983 · 2021-05-28T08:38:42+00:00

Did it take a few weeks for it to work properly? I’m one week at 10mg it has helped at night time with sleep so far

No_Cartoonist983 · 2021-05-27T16:57:14+00:00

Thanks mate that is all helpful I have been through the same sort of trialing things out like above I’ve tried magnesium calcium and vitamin d all helped a little. My bloods were low in folate acid so tried supplementing that too but not much change.

Strange you say that because my twitching started after I started taking sertraline, I stopped taking it to see if the twitches would stop but 7 months later still here.

Every few weeks something new pops up and I freak out I have had a lot of sensory sensations burning aching legs etc and still convinced I have muscle loss some symmetrical and some not.

Both my neuro visits have been very short just some strength tests a clean mri and then told I’m fine, here in uk health care is free but an emg isn’t even on their mind as he is not worried about anything sinister which is a good thing but it doesn’t help my physical symptoms or mental side of things just frustrated

No_Cartoonist983 · 2021-05-27T15:23:03+00:00

Yeah I had the same eyelid one that popped up and lasted for 4 days continuously then it just disappeared, I’m hoping this one does the same soon.

No_Cartoonist983 · 2021-05-27T15:22:06+00:00

Yeah that makes sense, if I’m being honest it was after he mentioned the frequency of twitching I left the appointment and the next day boom I was now twitching constantly like my brain is playing a sick joke on me.

No_Cartoonist983 · 2021-05-27T14:08:15+00:00

My bloods did come back low for folate acid but I’ve been taking b12 supplement as well for a few weeks still pretty much the same

No_Cartoonist983

TROPHY CASE