Gaslighting?: I went to an MS specialist... - My MSAA Community

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Gaslighting?

Petdog profile image
16 Replies

I went to an MS specialist referred by my neurologist. My symptoms were worsening including mobility issues, brain fog, and bladder issues. I became anxious because I didn't know what was happening. First, the neurologist said I was depressed. The Ms specialist which I saw in NYC said I was depressed.

I went down a rabbit hole focusing exclusively on depression because i trusted that these doctors new better than me.

I finally broke and resigned from my job because with all the focus on depression no one addressed mobility issues, cognitive issues and frequent UTIs and went on disability.

After working with a therapist, she suggested I look at my team of doctors. I did. I found my voice and found a new MS specialist in NJ. It was life changing. I also addressed my need to become a stronger self advocate and not be afraid to challenge my doctors.has

He addressed each of my symptoms one by one and came up with a plan. My anxiety levels went down dramatically. I was no longer "depressed". I have treated depression over the years so I knew depression. I kept telling everyone I wasn't depressed but was gaslit into assuming I was.

Has anyone ever had this experience?

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Petdog
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16 Replies
NorasMom profile image
NorasMom

Yes. I spent several decades trying to get a diagnosis because the doctors ignored everything and went from telling me it was growing pains to I must be stressed out and need tranquilizers. I bought into that for too long, letting myself be convinced that I was just whiny and overreacting.

The only bright spot for me was that my GP believed me all along and didn't give up. We finally found the right neurologist, and he did more for me in 6 weeks than all the other specialists (including an MS expert) over nearly 40 years.

Petdog profile image
Petdog in reply to NorasMom

Thank you for sharing. Sometimes all it take is the right doctor to trust you as the patient who knows their body and mind. I am so glad you find the right provider. It makes all the difference in the world.

kdali profile image
kdali

Yes, I had medication side effects dismissed as motherhood problems by a specialist. I'm glad you found a good one and have a plan! 🎉

Petdog profile image
Petdog in reply to kdali

Thank you! Before I was diagnosed with MS and after I had my second child I had such exhaustion like I've never experienced before. I was told that I was a tired mom. When I said I never experienced this before and my second child was sleeping through the night, I was told again that I was depressed and this time because I wasn't working. I am concerned that women are easily dismissed and if the doctor can't find a root cause then we're diagnosed as crazy.

Kit10 profile image
Kit10

Sadly it's all to easy to get labelled as depressed if you are unhappy or worried.

The world needs to distinguish between depression, and unhappiness about the situation, and relearn how to give people practical help when that's what they need, instead of pushing unnecessary antidepressants at people who aren't ill.

I was once told I was depressed by a careers advisor when I had just been made redundant for the 2nd time in 2 years and was trying to get advice about how to change career for a job that would suit me better rather than look for another one like the last, which I had disliked intensely.

Even more bizarre - I used to have a group of friends I met up with once or twice a year. On a hiking holiday in Scotland I realised that I had become the group joker so thoroughly that they laughed at everything I said even if I didn't mean it as a joke. I decided that could be dangerous in the mountains, so I resolved to give up being the group jester. Next time we met up, I wasn't even unhappy, but one of them told me I wasn't my usual cheerful self, I must be depressed, and advised me to see a doctor!

Petdog profile image
Petdog in reply to Kit10

Its frustrating and scary. I think friends who say these things don't necessarily mean harm but may make an ignorant comment. However, in my view, doctors should know better. Not one asked me any diagnostic questions about depression. As I mentioned, I have experienced depression and this was not that. They assumed that if I was unhappy or anxious about my situation I must be depressed. I was frustrated that my mobility was declining and my fatigue was increasing.

Thank you for responding. I am not happy that you experienced this but I am grateful you took the time share and offer support.

Frances_B profile image
Frances_B

Medical gas-lighting is a far too common problem - sadly most of us have had to put up with some degree of it at some point during the time that MS has been our constant companion...

gavingiovannoni.substack.co...

gavingiovannoni.substack.co...

(Note - links are to two different articles - even though they look the same in the comment)

Petdog profile image
Petdog in reply to Frances_B

Thank you so much for the articles!

mrsmike9 profile image
mrsmike9

I am fortunate and was figured out right away. But how lucky for you to have an entire team of doctors to figure things out for you!

Petdog profile image
Petdog in reply to mrsmike9

Thank you! It took awhile but I'm grateful for the team I have now.

green244 profile image
green244

And, the strange thing about actual depression is that it's hard to detect. I knew two very cheerful people who committed suicide.

Petdog profile image
Petdog in reply to green244

Yes that's true. I often find that some doctors aren't taking the time to ask the right questions in regards to depression and I suppose for some people they may not want to discuss how they're really feeling.

twooldcrows profile image
twooldcrows

i hope your doctor listens to you more and they can figure out what is going on ...love and happiness ,,yes speaks out for your the patient and you are asking for help to have a great life for you want to live it ....loads of love and happiness ...

Petdog profile image
Petdog in reply to twooldcrows

Thank you!!

vanegreen profile image
vanegreen

I was diagnosed with MS on February 21, 2023. But I had symptoms since January 6, 2023 (one month, fifteen days). I spent a lot of time and money, and no one could help me.

Now I have a diagnosis of clinical depression and I am taking medication for it, but that's okay, I was in depression 8 years ago and I feel a different feeling than I do now. I was frustrated because I had no medicine (Doctors in my country don't give medicine if I don't have a diagnosis) and my arms look purple because of all the studies I had to do weekly, and they couldn't find a diagnosis. I was fat for all the corticosteroid.

I finally have a diagnosis and medicine too, I really don't know if I'm depressed or frustrated, but I still take the medicine until the psychiatrist says I have to stop.

Petdog profile image
Petdog in reply to vanegreen

I understand. Its very possible to have depression and MS. I would never deny that. I have dealt with depression in my life so I believe I am confident to know if I am depressed or not or if my depression is worsening. I do acknowledge I was growing ever more anxious as I was told I was just depressed when my symptoms were progressing.

I think if your have a good psychiatrist I would trust them. My concern for any one, especially women, is that when we speak up about medical conditions that cannot be easily diagnosed we are made to feel crazy. If you have dealt with depression, then its easy for a medical professional to default to that if they cannot detect a medical problem.

I almost cried one day when I finally found a good doctor who said "I understand how anxiety provoking it is when you anticipate getting another UTI ''. I was suffering from chronic UTIs which 1 out 2 times would be positive. My doctor was patient and never dismissed my symptoms. He later diagnosed me with Interstitial cystitis which can only be helped with diet modification.

MS is a complex illness that requires patience and intelligence to find a diagnosis!

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