MS PTSD and Neurologist’s Angst

 My favorite Doctor blog posted this one….

https://multiple-sclerosis-research.org/2021/05/flashback/?unapproved=110217&moderation-hash=d1bfb7d0e72db68b1c4e6abed81ce2b1#comment-110217

My comments:

Try as you might, the Trauma You experienced and the Trauma we pwMS experience are parallels.

You have a New “condition “

You Lost Something (not always sure of What You lost)

You don’t know what’s next (and can’t get worse case scenario out of your scarred brain)

You don’t know how you’ll love,earn,be,feel Normal again

You don’t know if your Doctor is good enough, smart enough, nice enough, no pressure Doc.

Dr. G. Try not to try too hard.

PTSD Is a part of this MiSerable disease.

Psych referral or Preferably Clinic based Neuro Psych Doctor.

My Neuro Doctor Fellow was also a friend. She told me. 

Then I went home.

Grief, anger, You have to go through The Stages! No matter what!

Then I went back for the plan.

She didn’t jump right into the glossy Pharma bling.

She asked me if I’d had a good cry yet.

Then I cried.

And that was my beginning. As hard as it is, like your trauma, you simply have to accept it and move away from that day. You Must go through the stages of grief when you lose something so precious like your health and function. When the Future is murky, uncertain. Flashbacks to people you’ve known who were so sad looking.

I worked with a lot of Neurologists. I’m grateful Angie told me. Most, in my experience, lack the psych skills that would really help. They get too cerebral, or detached, or focusing on their gig. Angie had psych skills and she felt horrible seeing a friend lose something Precious, her envisioned future.

I got over it. When I recount my experiences, it’s a memory, not necessarily a Ruminating.

I’ve seen psych a few times over the years. They really help with adjustment to a new life, depression, anxiety. Neurologists need to hand off that task, preferably with a team, Psych, Social Worker (financial, medical coverage/needs,emotional support, family assessment, employment issues,periodic check ins),PT/OT/SLP eval and preventative, cognitive,restorative support, Pharmacy.

BTW, your blog helps many of us looking for deeper answers to our questions. MS Doctors don’t really have time to chat. I take my written assessment of my status into clinic because they understand SOAP notes 📝 

I focus questions carefully to get them all in. Most people had never met a neurologist before. They are, well, different. 

Very helpful to me is the support group ShiftMS. Early on I tried to engage with USA MS society. I wrote a story which they rejected. They are shills for money, not honesty. Shift MS, however are let it all hang out people. A welcoming group. I think that has helped me the most, People sharing, like minded, dealing with MS, like I am, with loved ones who are puzzled, wounded, frightened too. Support groups are better to me online. Then you Pick who you gel with.

Hope this helps.