I'm not going to lie...I've had plenty of bad experiences with doctors which led me to give up on doctors and I didn't see a doctor for probably a year-and-a-half which I know is a No-No with my MPN. Anyway the pains in my body had gotten severe enough that I wanted to get a work accommodation so I was forced to see a doctor to get a doctors note.
So I saw a new doctor a couple months ago. The first visit was awkward... she wasn't the nicest. I think she was overwhelmed because of my disease...she wasn't familiar with it and I think she was agitated that I hadn't seen a doctor in so long.
So anyway, A couple days ago I had my blood work rechecked and I was checking my portal on the website to see if the results were back and they weren't. But then I noticed an area where it said I could read the doctors notes. So I did. For that first appointment she put my primary reason for seeing her was a breast lump...which a breast lump was not discussed at all during that appointment because I don't have one. She also wrote that I believed my pain was due to my "cancer." And yes she put cancer in quotation marks. She wrote that I was also there for my depression. Which again, I was not there for my depression...I had just marked it on my history form that I had a history of depression. My one and only reason for that appointment was to get a doctor's note for my pain. When I read further into the notes it said that she listened to my heart and my lungs and they were normal and that she palpated my lymph nodes and that they were normal. People, she didn't lay a hand on me. She didn't touch me at all. She definitely didn't listen to my heart or lungs or touch a single lymph node. Which I almost wouldn't care that she didn't touch me for that appointment, it's just the fact that she wrote a report saying that she did touch me. The one good thing that came out of that appointment is she did prescribe me Cymbalta which has helped greatly with my pain but I have lost all trust in her. Unfortunately I've had similar experiences to this doctor's appointment which is the reason why I stopped going to doctors. She isn't the first doctor to lie and say they listened to my heart and lungs and palpated my lymph nodes because my old hematologist said that too when he also didn't lay a hand on me. And then my second hematologist wrote in his report that he "spoke to me at length" about how my disease can turn into leukemia or myelofibrosis at any moment but that wasn't the truth he didn't speak to me at length. I was the one who asked him about the leukemia and myelofibrosis and he kind of just swished his hand at me dismissively and said yes that's a possibility and then didn't talk any more about it.
I just have lost all faith in the medical field and I don't know what to do about it. These examples are the tip of the iceburg. I could tell you 50 more stories. It just makes me sad.
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Haa...mel, laughing my head off when I read it because I know your telling the absolute truth! I think we've all had experience of it with doctors! I personally could relate many times it as happened. You have to laugh when they relate to differering consultations then actually took place! (I think its called being creative with the truth). I can understand why your trust in drs is not the best, i've got to admit i'm not a big fan of doctors with the misdiagnoses in my own family but to a degree we have to trust them.I personally haven't seen my Gp for 6 months, i've been avoiding the calls off the surgery when they ask me to come in for checks. My motto? Only bad people need to go to see a doctor! Their are people who need appointments who have to wait. Only thing I can say is keep your chin up and keep laughing.🤣tina.🤗
😭 Thanks Tina. When I first read that report... let's just say I wasn't thinking very nice thoughts. But then I was like ok in 10 years she is the first person who has offered me a medication that has helped my pain... all the other doctors just kept running more blood work and more blood work but never offering a solution. But then when I saw that she put cancer in parentheses like I don't have a real cancer I only have a fake cancer...anger again was my foremost feeling. And my invisible breast lump... I'm not sure what to think about that. All I know is I'm being referred to Johns Hopkins which is supposed to be one of the best hospitals in the whole entire world and if they don't send me to a MPN specialist and they send me to a normal hematologist I might lose my gourd. Especially since there are three MPN specialists within a 10 mile radius of me. Yeah, I guess I'm lucky for that but if they blow me off so help me god....💀
How disappointing, exaggerating the actual consultation to make themselves look good? I don’t know. At least she came up with a new medication for the pain you were in. Did you get the medical note you went for? Fingers crossed you get referred to and MPN specialist this time. 🤞🤞🤞
I did get the medical note but she only signed it off for 4 months. But for once in my life, luck was on my side and when I turned in the paperwork to my job instead of putting in for 4 months of reduced work hours they ok'd a permanent reduction in hours. 😃 hehe My doctor doesn't know and I'm not telling her either. My job is known for having a requirement of 60 hour work weeks during the Christmas season. Last year almost killed me. So I am appreciating every minute of my 30 hour work week and not a second longer.
Congratulations!🎉✨👍That will make balancing home life, work and an MPN more bare able. I have to make that decision too, but approaching my head teacher won’t be easy and it’s not a conversation I’m looking forward to.
Omg. I was so excited when that happened. I've had this disease for over 15 years and it has kicked my butt for so long. People don't understand my level of fatigue and unfortunately it has been happening since I was a teen. I recall once sitting in a neurologists office crying my eyes out because I didn't understand why I couldn't remember things that were very important to my job and he was blaming it on depression. And I said "no, you don't understand." He had a very good heart but he didn't understand what was happening to me. I was diagnosed with my MPN a couple years later. I guess if I were you and I had to talk to the head teacher I would print off some information on mpn's so she would understand. Especially the information about fatigue and pain. ❤
That’s a good starting place. I need to decide what I want and then go in ready to negotiate. I’m just not sure what I want is the problem and can’t seem to make a decision. I’ve said it all so many times to family and friends and done nothing about it, everyone is sick of listening!
Hmmm. Well I can tell you how I made the decision. I just went with the minimum hours I was allowed to work and still be considered full-time and receive benefits. That's how I ended up at 30. But I know I live in a different country than you and the rules are different. I know with your extreme numbers that you are definitely feeling side effects. Maybe just sit back and think...would you be okay with 20 hours a week or 30 hours a week. Don't be scared to ask for what you need.
Many of us have had the same experience. I don’t know why a physician who has sworn the “hippocratic oath” would do such a thing, but I have evidence that it is done. Sadly, if you were to tell a new doctor that you caught a physician doing this, it is possible a new doctor may not accept you as a patient. Every time I leave a doctors office I request a report of the visit, including doctors notes. This way I may correct the record in a contemporaneous manner,
How very odd. I’m seriously at a loss for words. Clearly, she mustn’t have expected you to access her notes. It’s all very worrying. I note ‘osteomyelio’ requests a copy of all Drs visits including their notes, maybe this is the way to go.
Glad to at least hear that you’re getting some pain relief from the Cymbalta, and that you’ve managed to reduce your hours at work.
Thanks Mary. I can only imagine the pushback I would receive if I asked for the doctors notes before leaving the office. I think I'm just sad that this keeps happening. My mom keeps saying I have bad luck with doctors and I said "no the same thing is happening to you you're just not reading your records." Apparently they post all the notes for every visit on the portal for you to read so I'm not sure why she would lie like that... unless she is unaware that all of her notes are made available on the portal for me to read. That's probably the case. I guess in the end I got what I needed from the visit so that's what's most important.
Sorry that you had such a bad experience after waiting so long to seek medical attention. There are good doctors and bad doctors out there and you were unlucky enough to walk into her office. I hope your next experience is greatly improved.
I’m very wary of most docs now after several bad experiences over the years - even before I was diagnosed with ET. I tended to avoid going to a doctor unless I was at death’s door - which isn’t good either. I once had one gyno want to do a radical hysterectomy on me as routine blood tests showed a very high CA19.9 tumour marker - which he decided meant I had ovarian cancer. I decided to get an oncologist’s opinion and it turned out I had such high levels of antigens to malaria (I’m from New Guinea and had it several times over a 30yr period) that they were cross-reacting with marker and giving a false result! There was actually nothing wrong with me!
When I was first diagnosed with high platelets I thought it was the malaria antibodies again - but sadly not this time - and I was also Jak2 positive 😒
This is a prime example of why its best to take someone with us to appointments, not just as an extra pair of ears to remember what we may not, but to be a 'witness'. If you don't have anyone to go with you the next best thing would be to plonk a recording device on the desk and say this conversation is being recorded. Don't ask if she minds you recording, just tell her, then get straight down to business before she has a chance to react. If she asks why just give her some cock and bull story to shut her up.
Probably not. I actually had a doctor do something much worse a couple years ago and I reported it to the medical board but it all ended up in a dead-end and nothing happened. At the end of the day it's my word against hers and they will choose her for sure.
I'm horrified and saddened by your experience - it just simply should not happen that way. But please don't think that it's always like that. I have had excellent care from my GP throughout. When I was first diagnosed he openly admitted that he had no experience of ET (hardly surprising as it affects only 1 in 100,000) but he got in touch with the hemo consultant to find out about it. Throughout my treatment - over decades - he has always shown compassion and professionalism, which I think is the norm in the NHS. Unfortunately in such a huge organisation there will always be "rogue" doctors who bring the rest of the profession into disrepute.
Good luck with your future health and I hope you can find a GP who will give you great care. There are lots of them out there.
I totally understand what you've through with those pretty horrible doctors. Although my GP is good and have been looking after me the past 20+years, I still couldn't believe her 100% in some health issues, I deeply believe in self help and self learning sometimes so to make it easier to deal with the doctor on some health matters.
Me too. A lot of people say don't Google but you get far more info online than you get from Dr's, and this forum is a great source of information too. You recently gave me some excellent info on one of my recent posts.
Could you imagine if google didn't exist? We would know absolutely nothing about our disease except for the little bit of information that our doctors would let us know.
Hi Lifam.If Google didn't exist when I was diagnosed and told me I have Et,I would have thought it stood for extra-terrestrial and I was probably going to grow 2 heads over the course of time,especially when they told me I'd gotta take chemo pills as treatment also!!!👽👽tina🤗
DITTO! I once saw a neurologist,one of many), and he was very rude. Asked "WHY" I was there, and I told him I was referred to him. He stated he had nothing to "offer" me, and could only suggest I "UP" the pain meds.
The notes in his report were extensive. I couldn't believe it!
Out and out lies.
Now, I am able to laugh at it. We must all be our own health advocates. My GP said as much.
I too, have been putting off tests & seeing Dr's.
I am scared at what they'll find.
I am very hard on myself, so don't need any help in that area!
Good luck, and I guess having someone come along is a good idea, but I don't want to be a burden. This can be so isolating 🙄
I know what you mean about not wanting to burden people. I'm the same. But I may have to burden someone next time. Sounds like your neurologist and my doctor went to the same school. It's unbelievable...it really is.
Well mel, by the resplies a lot of us have had a similar experience with doctors. Can you imagine some of the things that would be written if they knew we couldn't access our records. These things are written in the full knowledge we can see our notes. Beggars belief! Tina.🤗
It just takes so much nerve to lie like that about someone's health. But yeah, it seems like it's pretty common. I'd hate to see their hidden file on me.
I feel your pain and distrust due to negative experiences with docs. I have had the entire range of really terrific experiences to truly awful. Recently had a craniotomy to resect a brain tumor - very scary. Terrific neuro- docs, fantastic neurosurgeon, wonderful hospital staff who took care of me post surgically. Also as favorable an outcome as is possible with this type of surgery. About a year and a half ago, had a Green Laser PVP (prostate surgery). The urologists involved failed to provide me adequate information about the procedure, did the procedure in a far more radical way than I would have ever consented to, and triggered reactive thrombocytosis due to the severe post-op bleeding and inflammation that put me back on chemo (hydroxyurea). Those uro-docs knew about the MPN, but just ignored it and did not bother with a hematology consult. I was way too trusting of docs who did not deserve to be trusted. Multiple negative and avoidable adverse effects from that procedure. On the other side of experience, also had a heart surgery (catheter ablation) to fix atrial tachycardia. Another terrific set of cardio-docs who did a fantastic job with my surgery and care before and after.
I have emerged form all of the above sadder, but hopefully wiser regarding medical care. The things I have learned are:
2. Tell your doctors what your treatment goals are. Be clear about your priorities. Document this interaction.
3. Prepare for each visit to the doc. Do your own research and have a written list of questions. Take notes and seek clarification of anything you do not understand.
4. Review your own medical record and ensure that it is accurate. Once a note is entered by the doc, it cannot be deleted, however, a clarifying or corrective note can be attached to something that is not accurate.
5. The docs work for you, not the other way around. You can and should fire a doc who does not provide high quality care or live up to reasonable expectations.
I did find a really great MPN Specialist from this list of patient-recommended docs mpnforum.com/list-hem./ . He works with me and my regular treating hematologist regarding my care for JAK2+PV.
All the best to you. Hope you find some better docs to work with.
That does sound like a horrible experience. I worked side-by-side with doctors for 19 years and I know there are good doctors, bad doctors, and mediocre doctors. This time I even asked the receptionist when I was making the appt would she personally see this doctor and she said yes. That is a great list of recommendations. And I do think we forget sometimes that the doctor is working for us.
I record all doctors visits. If they lie on a report I have proof. If they don’t allow recording find another doc. I have not had one since I started doing this who has refused. If I am receiving new info I will have a friend who needs $$ transcribe.
They're always covering their backs! It sounds as if the surgery you attend has a climate of this sloppy workmanship. I don't know what my GP has written about me but she's bad enough. Yours is a disgrace to the profession. At least the GP I hope to change to is human, knowledgeable, intuitive and helpful. I'm just biding my time until my next lot of tests.
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Dentist
what to think? 
Upsetting experience
Lyn30
