Last reply 2 weeks ago
Is it all in my head? (Pun intended)

Do you ever have an issue and no one around you understands which leads you to question if anything is actually wrong or if you’re acting like a hypochondriac. I second guess myself far too much. I think over-thinking this MS is going to send me to the looney bin.

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mavisdavies
2 weeks ago

@nakedandafraid omg yes, I’m undiagnosed and not only do I question myself I encounted such an unprofessional neuro that has not listened or discussed my vast symptoms (that do in fact make me question my own sanity, if I had never experienced these symptoms myself and read my list I’d think no way this can’t be real) and for him to write in letter that he has told me before that some or all of my symptoms are health anxiety related. This is something he has never communicated with me and makes me fear that any other Dr which reads his letter will form this view of me and I will not be. Believed. Thank you for writing this post so I don’t feel I am the only one.


itsmewithms
2 weeks ago

This bounced around last week as well…the frustration with the comment of “but you look fine”…basically, yah, I’m just faking this whole Ms thing…frustrating. Or try to explain to someone what fatigue is about….and my husband saying that I should just exercise more so I don’t get fatigued from little things….I need to build up endurance so I don’t get fatigued.

He has UC so I tell him that he just needs to eat more fiber or something so that he can poop right…exactly, it doesn’t really work that way ;-0 although he has been able to remain mostly asymptomatic by having a strict diet…so then it is almost worse as he insists that if I just ate what Terry Wahl says or Swank or any of the others that my MS would go away. OK, and maybe have chemo and stem cel and estim treatment…kinda forgot about all that…


peterfrancis
2 weeks ago

@nakedandafraid

It would be great if it was just a psychological issue of it being just all in our heads. Sadly that is just one of numerous symptoms this god awful disease has to offer.

“Try and be positive”, is something that’s been said to me more than once, like that will do anything anyway and what if you have nothing to be positive about?.

I look forward to losing my marbles completely…. if that happens, maybe it already has.


highlander
2 weeks ago

@nakedandafraid
If I were you I’d dress myself in knowledge…no pun intended 😀
Your profile say’s that you might have MS.
Have you had an MRI yet?
Chase up your neurologist.
You’ve been quite a while as a might have MS.
Feel free to ask anything you like, we’ll try and find an answer one way or another.
Welcome to club 😀


itsmewithms
2 weeks ago

@stephz @peterfrancis There was a post about some MS sessions in Budapest and one of them discussed the positive physical reactions to smiling. I would expect that laughter would be even more beneficial and know my husband went through a period with his UC that he tried some humor therapy along with his entire life style and diet change up. He held at NED for years although this years colonoscopy showed irritation he feels great.
https://pbs.twimg.com/media/EHyYD_HWkAAYkga.jpg

So-I think there is something to trying to stay positive and I try to although some days are a challenge ;-/ on those days I try to find something good on Utube, watch a funny show or movie or get together with a friend or call someone that always makes me feel better. Even better if they don’t know I have MS and they just talk to me as a friend-
https://threadreaderapp.com/thread/1187984507913359360.html
https://threadreaderapp.com/thread/1188360258957254656.html


nakedandafraid
2 weeks ago

@mavisdavies in fairness my neuro is A1! Its just hard to get to see or speak to your neuro in Ireland. They all have massive waitlists. GPs are my problem mostly because they don’t understand the intricacies of this darn disease.

@itsmewithms “but you look fine” is likely to set me off on a tirade at this point. Most of my friends know at this stage not to comment on appearances. They know I put on a brave face for the outside world.

@peterfrancis well I am positive I was dealt a weak hand at this table 😂 Does that count as positivity?

@highlander I have MS.


nutshell88
2 weeks ago

I stopped it fee yrs ago but its too much now the problem ms nurse says om 100% fine almost and thats true i still look for something wrong parents told me stop it even
i prefer to be on stand by mode for any relapse that might come so i dont panic i gues

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