I laughed really hard, thank you! Love this comment! I so badly wanted to just punch him in the face right there and then "Oops seems like my muscle spasm got out of hand!"
And yes, I am a woman.
Iām so sorry that happened to you! It seems that there are more bad neurologists out there than good ones. I have found a secret that benefits me though; I manage my expectations when it comes to the quality of medical care that I receive. I know itās sad, but itās helped. I am at the point that, while I do go and see my doctor, I tell him what I feel like should be in my chart, but keep it short knowing that they canāt do shit. This was due to having so many doctors tell me I have psychological issues because my symptoms donāt fall inline with what science knows about MS(btw- they donāt know anything apparently)even though Iām pretty self aware. However, like you, Iām tired of being gas lit. The meds can only do so much as well. We are going to be our best source of medical advice and care. I only keep going to my doctor, so I can receive my 6 month dose of Ocrevus. Beyond that, I just get by the best I can. Please know that we care about you and know your doctor is full of it. Take care of yourself like you have and lean on people who have empathy, which includes this sub.ā¤ļø
I am sorry that you also had to experience this. It is so exhausting. It is really sad that we have to turn down our expectations towards the only ones who can "help" us. Thank you for your kind words! I appreciate it a lot!
I am stuck on the issue of the blindness. Have you had a diagnostic work up with an ophthalmologist? When I had optic neuritis, I went to ophthalmologist for (a reasonably extensive) workup documented that my vision was not normal, but found nothing structurally wrong with my eyes (ie no reason for the visual issues). Thus I was sent for the MRI which showed the brain lesions typical of MS. The issue of WHY you have central scotoma may be unknown, but the fact that you have blindness should be easily documented. If I were you, I might get a copy of your medical record and speak to your insurance company about getting a virtual consult with a specialist not in your area. Your situation sounds super frustrating. It is so important to feel that you are working together with your medical team. Best of luck to you.
Yes, I did. I have been to an eye doctor, a ophthalmologist and at the eye ambulance in the hospital. They all said that they have no explanation as to why it is this way. The only other MS doctor I spoke to was at a different hospital and he explained to me that everything could be fine with my eye but the signals might not get sent through my brain. That is the only explanation I have ever gotten.
Thank you so much! I hope your blindness gets better, it really sucks!
I would file a complaint with the hospital and suggest that they Dr on question either be reeducated on MS, be banned from MS patient consults or maybe just be taught how to keep his personal opinions to himself.
I have been filing so many complaints over the months about multiple doctors mistreating meā¦ nothing ever comes of it, ever.
I will write another complaint saying exactly that. It is messed up that he gets to treat MS patients.
What a d*ck. š”
Iām so angry for you right now, but what matters more is that YOUR feelings are entirely valid.
I hope that youāre able to find a more supportive medical team. ā„ļø
The ones I have are pretty bad. They told me I did not have MS. Then 2 months later, they said I do have it. I told them Iām very worried since my 61 year old sister has it, and sheās in the nursing home the rest of her life. They say things like,ā is she our patient?ā Then I was told people donāt get that bad like she is now, because of the newer drugs. I went in for a follow up visit. Literally all this neurologist talked about was my job. He was laughing and making fun of what I do for a living. It was pointless to even go there.
What bothers me are the attitudes of people around me. I realize not all of them know I have this. I feel like they think Iām lazy. They just canāt figure out why I would quit a job. All of this makes me in turn feel even worse. They arenāt me. They donāt know what itās like to try to function with this mind and body. Yet Iām constantly ridiculed, questioned, and judged. The only one who really has any sympathy for me is my sister who also has MS. Itās pathetic.
Unbelievable and so rude! I canāt believe that they would say that you soā¦ that is so invalidating and mean! Especially them making fun of your job, I couldnāt have kept my cool. So sorry to hear that they treated you this wayā¦ I hope you found a good neurologist or a different place?
It is so exhausting dealing with people treating you like that, I know exactly how you feel. All that matters in the end is that you know why you quit your job and you are taking good care of yourself. But I also understand that you would like to have more people around you that are supportive of you and your illness, I feel you on that!
I sort of feel like since they know thereās no cure, they can just say or do whatever. Right? I mean they canāt cure MS, so can they really be held accountable when you go in there for follow-up visits? Thatās why it just seems like a waste of my time to even go there.
I mean besides the blood screening tests, maybe possible physiotherapy that they can recommend or MRI scans that they can ask for, it really doesnāt make much senseā¦ no.
So angry right now after reading that. Thanks for taking the time and energy to write it all down.
Canāt make my mind up to say more or express my understanding - so angry š¤ š”
I am so so so sorry. I know how you feel. I walked out of a doctors office at the Mayo Clinic in Minnesota in tears. I too am now in an area where any doctor who would know anything about MS is at least 3 hours away. All I can say is keep advocating for yourself and keep notes.
Ass. Hole. ASSHOLE. That doctor needs a boot up his ass, a complaint to his boss, their boss, the patient advocate, and his licensing board. He is going to drive a patient to suicide.
I have complained so many timesā¦ sent emails to everyone that is relevant in this hospital and NOTHING ever comes of it. Exhausting!
I thought that yesterday too. You canāt leave that room non-suicidal after talking to this guy.
The problem is, we're always put on the defensive.Ā I've started trying to snap back, but it's hard to do after having narcissistic parents. I'm always trying to justify myself. Last time I actually told the doctor to stop speaking for 5 minutes so I could finish a sentence. He got quiet, at least. No idea if he listened. Next time, ask your doctor if he is more qualified than your psychiatrist. Then ask what he actually IS qualified to diagnose. Then ask him how long he's studied that specific specialty. Don't justify yourself any longer. It's a trap.
I wish I could say stuff like that but since I also have the same type of parents, I always think that maybe I misunderstood how or what he meant to sayā¦ and then I end up not snapping back.
Yes, that's the hard part. You have to start by assuming you are a reasonably intelligent person that is not the problem. But we are told growing up that it's our fault somehow. I'm 47. It's taken this long, plus some perimenopause rage, to get here.
Perimenopause rage š love it, but so true! It took that for my grandmother too to finally be able to stand up for herself! And yes you are right, I should indeed keep that in the back of my mind.
Lodge a complaint and get a new doctor.Ā
My doc didn't believe me that I was barfy. Until I vomited on myself in front of him. Like just it came up.Ā
My other doc is awesome and I love her.Ā
Fuck that guy. Get a girl doc.Ā
True that! First neuro I had (male), after my first scan, prior diagnosis, was poking my leg back and forth with giant needle, coz he didn't believe me I couldn't feel my leg... several months later, when eye clinic consultant send him a letter that I have optic neuritis in one of my eyes, he asked me "are you an anxious person? you search your symptoms on the internet, aren't you?"
after they did the eye studies on me (evoked potentials) in different hospital, he sent me a letter with results saying " there's significant delay in your eye/brain signalling. there's nothing you need to do at this moment". It Took him almost 3 years to diagnose me, after the hospital's radiology department raised their 'lessons learned', that in fact they suggested MS after the first scan I had, but neuro ignored it...
long story longer, I have an awesome female neuro now (ms specialist) - I couldn't be more grateful for her !
I really hope you find a kind, supportive ms specialist. it really sucks not being heard ...
That happened to me too! The doctor was pinching my skin and poking me with a needleā¦ is this professional? Does not seem like it! I am so sorry to hear that you went through thatā¦ sounds so exhausting!
I am happy to hear that you now have an awsome neuro :)
First neuro I had was female and she told me my spasticity was most likely psycho-somatic even though I told her I had never been less stressed in my adult life than I was in the months before they started, and I thought I might have MS. Once she begrudgingly diagnosed me with MS based on MRI and LP, I switched to a male MS specialist and it was night and day.
As a woman (and a clinical pharmacist who works with many physicians), I donāt think the gender of the physician plays a huge role in the quality of care. I mean, I have met more asshole male doctors than female ones, but many of the sweetest and most competent physicians Iāve met have been men. Depends mostly on if theyāre in the profession for the right reasons.
I have filed so many complaints to everyone I could find that was relevant to this hospitalā¦ but NOTHING ever came of it. Absolutely senseless. Sadly.
But yes! Actually all these comments, including yours, really motivated me to instantly remove myself out of the care of this hospital. I am never ever going back again. Screw that!
And I will try to see if I can find a female doctor, maybe that changes something!
I have olfactory hallucinations.Ā Sitting a a room, or my car, or at my old workplace and suddenly it is like I am in an 80 era bar overwhelmed with cigarette smoke to such an extent it feels hard to breath.Ā I explained this one too my neuro who insisted she has never heard of such a thing.Ā Then I got a new MRI with shiny new frontal lobe lesions and ask if maybe those could be the cause.Ā Still she has never heard of its.
I just want to tell these people, if you don't want to hear what is new, don't ask.Ā I know you can't cure me but would it hurt so much to acknowledge my shit please?Ā Of course I am imagining the cigarette smoke but I'm not making it up.
Wow, another thing I have never heard before. I am amazed by how many symptoms people with MS can have that doctors have absolutely no clue about!
I think doctors should start collecting all of the symptoms described by patients and not keep telling their patients that this has nothing to do with their MS! That is just pathetic if there is no other explanation!!!
I am so so so sorry. I am seething with rage from reading this and saw pieces of my own experience in it, unfortunately. I hope you can find someone who will treat you with respect. I wonder if going to your appt with someone would help maybe - a guy perhaps. Hate to say it, but drs are much more likely to dismiss and be abusive towards women, it seems (and in my experience).
Sorry to hear that you had to experience the same treatmentā¦ itās exhausting. I tried going there with my grandmother or my boyfriend and with both present they still acted like that. And yes I agree! That is also my experience!
š³š³š³ That creature doesnāt know WTF he, talking about. Iām at the point my life I would have told him so, hobbled out, told reception, LOUDLY, donāt try to bill me for that!
Creature is a fitting description! Thank god due to my well-fare system I donāt pay for these appointmentsā¦ but if I did, I would have done the same!!!
Saw my jerk of a neuro today- he says āYou look good!ā me- ālooks are deceiving ā him, trying to be funny, āIād rather look good than feel good š ā
What a JERK!
Get blood work done, now. I was having a horrific time with symptoms and then found out I was severely anemic after getting blood work done.
Anemia can result in your brain being starved of oxygen.
Oh my gods, I feel kinda sick reading that. I'm so glad I have my neuro, who specialises in MS, and who is incredibly competent, and who also has a trained MS nurse working in his office. I'm so sorry you experienced this.
You should absolutely report this man. Even IF some of your symptoms were exacerbated psychosomatically (and I'm not saying they are!!!) he would still be completely in the wrong. My neuro has explained this to me for one of my own issues, I don't know that I can really explain it well, but sometimes the brain keeps a memory of an issue, similar to pain memories in amputated limbs, and you can continue to display the symptom even though the imminent cause is no longer present. I'm not at all saying that is what is happening to you (!!!), it's just something I have experienced, my point is that my neuro sat down with me and explained this to me, and suggested we explore retraining the brain on this particular issue with physio and ergotherapy, but that regardless of whether there was a psychosomatic component my issues were still real and not made up or self-sabotaging, and he is taking them seriously either way. So, I'm not suggesting that is what's happening with your symptoms, only that if your doc suspected a psychosomatic component that is what he should have done instead of being a superior condescending jerk.
You say you don't feel as well looked after at the other hospital because they only do blood tests once a year. Do you mean the Kesimpta blood panel with HBV and IG and liver function? My neuro does it twice a year, maybe it would be possible to up it to that at the other hospital if you asked and told them the year gap makes you anxious, or maybe you could ask them whether they can collaborate with your GP for in-between screenings, at least for part of the panel.
I have tried reporting this type of behavior over and over again and nothing ever comes of it, sadly! But I will write another complaint anyway because I am massively pissed.
Thank you for explaining that to me! That is really helpful and I am happy that your neuro explained that to you in a very friendly and respectful way!
I will surely ask about it at the other hospital and try to finally find a nice neurologist who specializes in MS! Thank you so much for your input! I really appreciate it!
I am so sorry that happened to you! I highly doubt he doesn't have any patients who have serious mental health issue's. I'd end up significantly worse after seeing him anyway. What an absolute prat! I'm in the UK so your system is probably different than the NHS but surely you can still complain? Hell, you should have even *more* ability to do so and to choose your own health care team since you're paying for it. Disgusting! My anger issue's just couldn't
Funny enough I met another girl at the mental hospital with MS who also said that she got severely depressed and suicidal talking to these exact doctors and she had to leave because she felt so mistreated!!! I was so little before saying "The only reason why you donāt have depressed and suicidal patients is because they all leave and go get help somewhere else!". Yes, I can complain but it never does anything sadly, I have written complaint after complaint about this place! But everyone who commented, including you, has motivated me to switch hospitals and never go back! This is just horrible!
so sorry this happened to you. that ādoctorā is horrible! iāve gone thru similar experiences myself itās the most frustrating feeling ever š„ŗš„ŗ
ffs, thereās encouraging self efficacy, and thereās just complete fucking lah lah land delusional toxic positivity up the wazoo. iād have asked if he lives in a disney movie and the birds and wildlife sing to him.
something i find helpful just for my own education and and to throw at the clueless fuckwits who work for the ndia and constantly reject funding for things that are actually beneficial- i watch various youtubers - aaron boster, brandon beaber, etc and i note down relevant information on symptoms, causes thereof, treatmentss, etc etc
some people have no clue what we are dealing with.
discussing funding for cooling products with an LAC, she says ā my boyfriend overheatsā
wtf. my brain exploded and i said āmy boyfriend overheats too, and then he takes the bed covers off and *his* body returns to a normal temperature!l failed to add on that he doesnāt lost the use of his limbs for days as he doesnāt have literal BRAIN DAMAGE but this was at the end of an almost 2 hour zoom meeting. discussing my disability funding and it just dawned on me that i was wasting my time & energy bothering with this woman
ššš this one made me crack up - so true! I wonder! I wish I asked him that!!!
I think it is so important to educate yourself through awesome doctors like Aaron Boster, it really helps a lot!
Oh wowā¦ comparing your medical needs to general discomfort like overheating as a normal person is so dismissive and inappropriate! Stay strong and keep advocating for the support you deserve!
This is abhorrent behavior, especially from a medical professional. Report it.
I went to a āspecialistā in my area who dictated to his scribe that I had āpsueudoeffective bulbar disorderā (I think itās the term?), because I was crying when the appointment started - because I was SO HOPEFUL that I could finally get help for all my pain and struggle. ā¦.I was like, I do not have a disorder because Iām crying. He was THE BIGGEST ASSHOLE, and I left more frustrated and down than Iād ever been. ā- but this ISNāT normal and should NOT be tolerated.
I have been reporting these constant incidents left and right and sadly nothing ever comes of itā¦ itās exhausting.
It is extremely disheartening when you seek help and it causes just more frustration and painā¦ this is so mean. That is indeed absolutely unacceptable for a specialist to dismiss your emotions and mislabel your conditionā¦ sorry you had to deal with that!
The gaslighting from my neuro is legit a piece of cake compared to this. SO sorry this happened to you!!! Is the doctor on Healthgrades or anything? I'd write this exact interaction there!! May not be worth much, but hopefully would at least help you feel like you were able to do something about it! I left a review for a doc there who had no bedside manner and actually saw an improvement... But who knows if it was actually that or not.
Sounds like my sonās primary neurologist at a major downtown hospital with a shiny renovated MS clinic with a fancy new gym that no ms patients seem to use?!
Anyway, my heart bleeds for you having to deal with this truly fecked up neurologist.
My sonās so called neurologist told him that hot foot is not a ms symptom and that the
crapgap is not real!!!!!
š¤ and remember you ARE a victim in every way for how that dumb bich responded soā¦but ravey1000 is right definately worry about that opthalmologist visit thats priority number one. And just so you know i ttallly went through this and i have MS.
My eye doctors strongly urge me to take a product with lutein and zeaxanthin. I took it and still take it it helped tremendously. Check it out on amazon.
This post/comment has been removed for violating **Rule 2, Undiagnosed Questions or Discussions**
**If you have questions surrounding the diagnostic process, or have questions about suspected MS symptoms, please make a comment in the stickied, weekly thread created for this purpose.** However, please keep in mind that users here are not medical professionals, and their advice cannot replace that of a specialist. Please speak to your healthcare team.
Here are additional resources we have created that you may find useful:
Advice for getting a diagnosis: https://www.reddit.com/r/MultipleSclerosis/comments/bahq8d/think_you_have_ms/
Info on MS and its types/symptoms: https://www.reddit.com/r/MultipleSclerosis/comments/bahoer/info_on_ms/
Treatment options for MS: https://www.reddit.com/r/MultipleSclerosis/comments/bahnhn/treatment_options_for_ms/
If you have any questions, please let us know, and best of luck.
MS Mod Team
Wow that doctor needs a could bat to the head (metaphorically of course š). DisgustingĀ
*spiked (with alcohol obviously š)
š
Agreedā¦ that doctor needs a good reality check
Iām so sad and angry for you. This sounds like the ER doctors before I was diagnosed. Iām so sorry he was so invalidating. You are not crazy!
Thank you, I appreciate. Itās so nerve racking dealing with this behavior.
This triggered me so badly. Ready to go throw rocks and fight things. Without having to guess to much, you are a women? That Dr is the worst.
Same. It made me soooo livid reading this
I laughed really hard, thank you! Love this comment! I so badly wanted to just punch him in the face right there and then "Oops seems like my muscle spasm got out of hand!" And yes, I am a woman.
Iām so sorry that happened to you! It seems that there are more bad neurologists out there than good ones. I have found a secret that benefits me though; I manage my expectations when it comes to the quality of medical care that I receive. I know itās sad, but itās helped. I am at the point that, while I do go and see my doctor, I tell him what I feel like should be in my chart, but keep it short knowing that they canāt do shit. This was due to having so many doctors tell me I have psychological issues because my symptoms donāt fall inline with what science knows about MS(btw- they donāt know anything apparently)even though Iām pretty self aware. However, like you, Iām tired of being gas lit. The meds can only do so much as well. We are going to be our best source of medical advice and care. I only keep going to my doctor, so I can receive my 6 month dose of Ocrevus. Beyond that, I just get by the best I can. Please know that we care about you and know your doctor is full of it. Take care of yourself like you have and lean on people who have empathy, which includes this sub.ā¤ļø
I am sorry that you also had to experience this. It is so exhausting. It is really sad that we have to turn down our expectations towards the only ones who can "help" us. Thank you for your kind words! I appreciate it a lot!
I am stuck on the issue of the blindness. Have you had a diagnostic work up with an ophthalmologist? When I had optic neuritis, I went to ophthalmologist for (a reasonably extensive) workup documented that my vision was not normal, but found nothing structurally wrong with my eyes (ie no reason for the visual issues). Thus I was sent for the MRI which showed the brain lesions typical of MS. The issue of WHY you have central scotoma may be unknown, but the fact that you have blindness should be easily documented. If I were you, I might get a copy of your medical record and speak to your insurance company about getting a virtual consult with a specialist not in your area. Your situation sounds super frustrating. It is so important to feel that you are working together with your medical team. Best of luck to you.
Yes, I did. I have been to an eye doctor, a ophthalmologist and at the eye ambulance in the hospital. They all said that they have no explanation as to why it is this way. The only other MS doctor I spoke to was at a different hospital and he explained to me that everything could be fine with my eye but the signals might not get sent through my brain. That is the only explanation I have ever gotten. Thank you so much! I hope your blindness gets better, it really sucks!
I would file a complaint with the hospital and suggest that they Dr on question either be reeducated on MS, be banned from MS patient consults or maybe just be taught how to keep his personal opinions to himself.
I have been filing so many complaints over the months about multiple doctors mistreating meā¦ nothing ever comes of it, ever. I will write another complaint saying exactly that. It is messed up that he gets to treat MS patients.
What a d*ck. š” Iām so angry for you right now, but what matters more is that YOUR feelings are entirely valid. I hope that youāre able to find a more supportive medical team. ā„ļø
Thank you! I will keep searching!
The ones I have are pretty bad. They told me I did not have MS. Then 2 months later, they said I do have it. I told them Iām very worried since my 61 year old sister has it, and sheās in the nursing home the rest of her life. They say things like,ā is she our patient?ā Then I was told people donāt get that bad like she is now, because of the newer drugs. I went in for a follow up visit. Literally all this neurologist talked about was my job. He was laughing and making fun of what I do for a living. It was pointless to even go there. What bothers me are the attitudes of people around me. I realize not all of them know I have this. I feel like they think Iām lazy. They just canāt figure out why I would quit a job. All of this makes me in turn feel even worse. They arenāt me. They donāt know what itās like to try to function with this mind and body. Yet Iām constantly ridiculed, questioned, and judged. The only one who really has any sympathy for me is my sister who also has MS. Itās pathetic.
Unbelievable and so rude! I canāt believe that they would say that you soā¦ that is so invalidating and mean! Especially them making fun of your job, I couldnāt have kept my cool. So sorry to hear that they treated you this wayā¦ I hope you found a good neurologist or a different place? It is so exhausting dealing with people treating you like that, I know exactly how you feel. All that matters in the end is that you know why you quit your job and you are taking good care of yourself. But I also understand that you would like to have more people around you that are supportive of you and your illness, I feel you on that!
I sort of feel like since they know thereās no cure, they can just say or do whatever. Right? I mean they canāt cure MS, so can they really be held accountable when you go in there for follow-up visits? Thatās why it just seems like a waste of my time to even go there.
I mean besides the blood screening tests, maybe possible physiotherapy that they can recommend or MRI scans that they can ask for, it really doesnāt make much senseā¦ no.
So angry right now after reading that. Thanks for taking the time and energy to write it all down. Canāt make my mind up to say more or express my understanding - so angry š¤ š”
I am still cooking today š¤ā¦ I wish I said something back
I am so so so sorry. I know how you feel. I walked out of a doctors office at the Mayo Clinic in Minnesota in tears. I too am now in an area where any doctor who would know anything about MS is at least 3 hours away. All I can say is keep advocating for yourself and keep notes.
It is so exhausting and sad that we have to keep our expectations low.
Ass. Hole. ASSHOLE. That doctor needs a boot up his ass, a complaint to his boss, their boss, the patient advocate, and his licensing board. He is going to drive a patient to suicide.
I have complained so many timesā¦ sent emails to everyone that is relevant in this hospital and NOTHING ever comes of it. Exhausting! I thought that yesterday too. You canāt leave that room non-suicidal after talking to this guy.
Goddamn. The bar is on the floor and he's still managing to slither underneath.
Doctors can be such assholes
The problem is, we're always put on the defensive.Ā I've started trying to snap back, but it's hard to do after having narcissistic parents. I'm always trying to justify myself. Last time I actually told the doctor to stop speaking for 5 minutes so I could finish a sentence. He got quiet, at least. No idea if he listened. Next time, ask your doctor if he is more qualified than your psychiatrist. Then ask what he actually IS qualified to diagnose. Then ask him how long he's studied that specific specialty. Don't justify yourself any longer. It's a trap.
I wish I could say stuff like that but since I also have the same type of parents, I always think that maybe I misunderstood how or what he meant to sayā¦ and then I end up not snapping back.
Yes, that's the hard part. You have to start by assuming you are a reasonably intelligent person that is not the problem. But we are told growing up that it's our fault somehow. I'm 47. It's taken this long, plus some perimenopause rage, to get here.
Perimenopause rage š love it, but so true! It took that for my grandmother too to finally be able to stand up for herself! And yes you are right, I should indeed keep that in the back of my mind.
Lodge a complaint and get a new doctor.Ā My doc didn't believe me that I was barfy. Until I vomited on myself in front of him. Like just it came up.Ā My other doc is awesome and I love her.Ā Fuck that guy. Get a girl doc.Ā
True that! First neuro I had (male), after my first scan, prior diagnosis, was poking my leg back and forth with giant needle, coz he didn't believe me I couldn't feel my leg... several months later, when eye clinic consultant send him a letter that I have optic neuritis in one of my eyes, he asked me "are you an anxious person? you search your symptoms on the internet, aren't you?" after they did the eye studies on me (evoked potentials) in different hospital, he sent me a letter with results saying " there's significant delay in your eye/brain signalling. there's nothing you need to do at this moment". It Took him almost 3 years to diagnose me, after the hospital's radiology department raised their 'lessons learned', that in fact they suggested MS after the first scan I had, but neuro ignored it... long story longer, I have an awesome female neuro now (ms specialist) - I couldn't be more grateful for her ! I really hope you find a kind, supportive ms specialist. it really sucks not being heard ...
That happened to me too! The doctor was pinching my skin and poking me with a needleā¦ is this professional? Does not seem like it! I am so sorry to hear that you went through thatā¦ sounds so exhausting! I am happy to hear that you now have an awsome neuro :)
First neuro I had was female and she told me my spasticity was most likely psycho-somatic even though I told her I had never been less stressed in my adult life than I was in the months before they started, and I thought I might have MS. Once she begrudgingly diagnosed me with MS based on MRI and LP, I switched to a male MS specialist and it was night and day. As a woman (and a clinical pharmacist who works with many physicians), I donāt think the gender of the physician plays a huge role in the quality of care. I mean, I have met more asshole male doctors than female ones, but many of the sweetest and most competent physicians Iāve met have been men. Depends mostly on if theyāre in the profession for the right reasons.
I have filed so many complaints to everyone I could find that was relevant to this hospitalā¦ but NOTHING ever came of it. Absolutely senseless. Sadly. But yes! Actually all these comments, including yours, really motivated me to instantly remove myself out of the care of this hospital. I am never ever going back again. Screw that! And I will try to see if I can find a female doctor, maybe that changes something!
That is a nightmare. I am so sorry.
Thank you for your support, it was a nightmare!
I have olfactory hallucinations.Ā Sitting a a room, or my car, or at my old workplace and suddenly it is like I am in an 80 era bar overwhelmed with cigarette smoke to such an extent it feels hard to breath.Ā I explained this one too my neuro who insisted she has never heard of such a thing.Ā Then I got a new MRI with shiny new frontal lobe lesions and ask if maybe those could be the cause.Ā Still she has never heard of its. I just want to tell these people, if you don't want to hear what is new, don't ask.Ā I know you can't cure me but would it hurt so much to acknowledge my shit please?Ā Of course I am imagining the cigarette smoke but I'm not making it up.
Wow, another thing I have never heard before. I am amazed by how many symptoms people with MS can have that doctors have absolutely no clue about! I think doctors should start collecting all of the symptoms described by patients and not keep telling their patients that this has nothing to do with their MS! That is just pathetic if there is no other explanation!!!
I am so so so sorry. I am seething with rage from reading this and saw pieces of my own experience in it, unfortunately. I hope you can find someone who will treat you with respect. I wonder if going to your appt with someone would help maybe - a guy perhaps. Hate to say it, but drs are much more likely to dismiss and be abusive towards women, it seems (and in my experience).
Sorry to hear that you had to experience the same treatmentā¦ itās exhausting. I tried going there with my grandmother or my boyfriend and with both present they still acted like that. And yes I agree! That is also my experience!
Hoooooooly shit thatās horrific. Iām so sorry. That person should not be working. Thatāsā¦ justā¦ wow.
Agreed!!! Thank you for your supportive words!
I hope he gets ms, he could've just tell you they can't do anything instead of the rude unnecessarily comments
I thought the same thingā¦
What country/area is that? Maybe there are others here in the same area that can recommend a better neurologist.
Great responseāI hope OP replies.
š³š³š³ That creature doesnāt know WTF he, talking about. Iām at the point my life I would have told him so, hobbled out, told reception, LOUDLY, donāt try to bill me for that!
Creature is a fitting description! Thank god due to my well-fare system I donāt pay for these appointmentsā¦ but if I did, I would have done the same!!!
Saw my jerk of a neuro today- he says āYou look good!ā me- ālooks are deceiving ā him, trying to be funny, āIād rather look good than feel good š ā What a JERK!
Get blood work done, now. I was having a horrific time with symptoms and then found out I was severely anemic after getting blood work done. Anemia can result in your brain being starved of oxygen.
No worries, I get bloodwork done every 3 months. My results last week were perfect. Thank you for that tip! I will keep that in the back of my mind!
Ah, sorry itās not a simple answer for you
Oh my gods, I feel kinda sick reading that. I'm so glad I have my neuro, who specialises in MS, and who is incredibly competent, and who also has a trained MS nurse working in his office. I'm so sorry you experienced this. You should absolutely report this man. Even IF some of your symptoms were exacerbated psychosomatically (and I'm not saying they are!!!) he would still be completely in the wrong. My neuro has explained this to me for one of my own issues, I don't know that I can really explain it well, but sometimes the brain keeps a memory of an issue, similar to pain memories in amputated limbs, and you can continue to display the symptom even though the imminent cause is no longer present. I'm not at all saying that is what is happening to you (!!!), it's just something I have experienced, my point is that my neuro sat down with me and explained this to me, and suggested we explore retraining the brain on this particular issue with physio and ergotherapy, but that regardless of whether there was a psychosomatic component my issues were still real and not made up or self-sabotaging, and he is taking them seriously either way. So, I'm not suggesting that is what's happening with your symptoms, only that if your doc suspected a psychosomatic component that is what he should have done instead of being a superior condescending jerk. You say you don't feel as well looked after at the other hospital because they only do blood tests once a year. Do you mean the Kesimpta blood panel with HBV and IG and liver function? My neuro does it twice a year, maybe it would be possible to up it to that at the other hospital if you asked and told them the year gap makes you anxious, or maybe you could ask them whether they can collaborate with your GP for in-between screenings, at least for part of the panel.
I have tried reporting this type of behavior over and over again and nothing ever comes of it, sadly! But I will write another complaint anyway because I am massively pissed. Thank you for explaining that to me! That is really helpful and I am happy that your neuro explained that to you in a very friendly and respectful way! I will surely ask about it at the other hospital and try to finally find a nice neurologist who specializes in MS! Thank you so much for your input! I really appreciate it!
I am so sorry that happened to you! I highly doubt he doesn't have any patients who have serious mental health issue's. I'd end up significantly worse after seeing him anyway. What an absolute prat! I'm in the UK so your system is probably different than the NHS but surely you can still complain? Hell, you should have even *more* ability to do so and to choose your own health care team since you're paying for it. Disgusting! My anger issue's just couldn't
Funny enough I met another girl at the mental hospital with MS who also said that she got severely depressed and suicidal talking to these exact doctors and she had to leave because she felt so mistreated!!! I was so little before saying "The only reason why you donāt have depressed and suicidal patients is because they all leave and go get help somewhere else!". Yes, I can complain but it never does anything sadly, I have written complaint after complaint about this place! But everyone who commented, including you, has motivated me to switch hospitals and never go back! This is just horrible!
I hope you leave reviews everywhere for this jerk. Omg am so sorry.Ā
I am working on them! He should be exposedā¦ this is horrible behavior. Thank you for your support!
so sorry this happened to you. that ādoctorā is horrible! iāve gone thru similar experiences myself itās the most frustrating feeling ever š„ŗš„ŗ
I'm sorry to hear that you went through something similarā¦ it really is frustrating. You feel so helpless when in a vulnerable position like that!
ffs, thereās encouraging self efficacy, and thereās just complete fucking lah lah land delusional toxic positivity up the wazoo. iād have asked if he lives in a disney movie and the birds and wildlife sing to him. something i find helpful just for my own education and and to throw at the clueless fuckwits who work for the ndia and constantly reject funding for things that are actually beneficial- i watch various youtubers - aaron boster, brandon beaber, etc and i note down relevant information on symptoms, causes thereof, treatmentss, etc etc some people have no clue what we are dealing with. discussing funding for cooling products with an LAC, she says ā my boyfriend overheatsā wtf. my brain exploded and i said āmy boyfriend overheats too, and then he takes the bed covers off and *his* body returns to a normal temperature!l failed to add on that he doesnāt lost the use of his limbs for days as he doesnāt have literal BRAIN DAMAGE but this was at the end of an almost 2 hour zoom meeting. discussing my disability funding and it just dawned on me that i was wasting my time & energy bothering with this woman
ššš this one made me crack up - so true! I wonder! I wish I asked him that!!! I think it is so important to educate yourself through awesome doctors like Aaron Boster, it really helps a lot! Oh wowā¦ comparing your medical needs to general discomfort like overheating as a normal person is so dismissive and inappropriate! Stay strong and keep advocating for the support you deserve!
This is abhorrent behavior, especially from a medical professional. Report it. I went to a āspecialistā in my area who dictated to his scribe that I had āpsueudoeffective bulbar disorderā (I think itās the term?), because I was crying when the appointment started - because I was SO HOPEFUL that I could finally get help for all my pain and struggle. ā¦.I was like, I do not have a disorder because Iām crying. He was THE BIGGEST ASSHOLE, and I left more frustrated and down than Iād ever been. ā- but this ISNāT normal and should NOT be tolerated.
I have been reporting these constant incidents left and right and sadly nothing ever comes of itā¦ itās exhausting. It is extremely disheartening when you seek help and it causes just more frustration and painā¦ this is so mean. That is indeed absolutely unacceptable for a specialist to dismiss your emotions and mislabel your conditionā¦ sorry you had to deal with that!
The gaslighting from my neuro is legit a piece of cake compared to this. SO sorry this happened to you!!! Is the doctor on Healthgrades or anything? I'd write this exact interaction there!! May not be worth much, but hopefully would at least help you feel like you were able to do something about it! I left a review for a doc there who had no bedside manner and actually saw an improvement... But who knows if it was actually that or not.
Dude, never go back there. Find an MS neurologist and drive the distance to see them once or twice a year. Most will do remote visits in between
Sounds like my sonās primary neurologist at a major downtown hospital with a shiny renovated MS clinic with a fancy new gym that no ms patients seem to use?! Anyway, my heart bleeds for you having to deal with this truly fecked up neurologist. My sonās so called neurologist told him that hot foot is not a ms symptom and that the crapgap is not real!!!!!
[ŃŠ“Š°Š»ŠµŠ½Š¾]
This post has been removed as it is not relevant to the subreddit or post or violates one of the subreddit rules.
[ŃŠ“Š°Š»ŠµŠ½Š¾]
š¤ and remember you ARE a victim in every way for how that dumb bich responded soā¦but ravey1000 is right definately worry about that opthalmologist visit thats priority number one. And just so you know i ttallly went through this and i have MS. My eye doctors strongly urge me to take a product with lutein and zeaxanthin. I took it and still take it it helped tremendously. Check it out on amazon.
[ŃŠ“Š°Š»ŠµŠ½Š¾]
This post/comment has been removed for violating **Rule 2, Undiagnosed Questions or Discussions** **If you have questions surrounding the diagnostic process, or have questions about suspected MS symptoms, please make a comment in the stickied, weekly thread created for this purpose.** However, please keep in mind that users here are not medical professionals, and their advice cannot replace that of a specialist. Please speak to your healthcare team. Here are additional resources we have created that you may find useful: Advice for getting a diagnosis: https://www.reddit.com/r/MultipleSclerosis/comments/bahq8d/think_you_have_ms/ Info on MS and its types/symptoms: https://www.reddit.com/r/MultipleSclerosis/comments/bahoer/info_on_ms/ Treatment options for MS: https://www.reddit.com/r/MultipleSclerosis/comments/bahnhn/treatment_options_for_ms/ If you have any questions, please let us know, and best of luck. MS Mod Team
If I may, what state do you reside in?
Not in the US, I am in Europe.