Do People Think Your MS Problems Are All in Your Head?

I went to the ER with another excruciating headache. The ER doctor told me it was the "natural progression of my disease" and there was nothing they could do.

Actually, there was something they could have done. They could have read the CT scan I had the previous time I went to the ER, or looked at the MRI I had in between.

If someone had bothered taking a look, they would have seen a large sphenoid sinus infection that was pushing my brain our and up against my head, thus the pain.

I feel like medical waste. No one wants to deal with older MS patients. I can't wait until someone comes up with a better "Best Practice" model for older patients with MS. A visit to a neurologist twice a year, and ER visits in-between does not provide adequate or cost-effective treatment.

I feel like a disposable patient. I was told by my neurologist that doctors are afraid of lawsuits when it comes to MS patients.

Before my diagnosis doctors had me thinking I was crazy. A respected head of Beth Israel Neurology diagnosed me with Psychogenic Disorders:

https://www.webmd.com/pain-management/guide/pain-management-psychogenic-pain

I spent a year working with a Psychiatrist and Physical Therapist, both of which had no idea how to treat me before I was able to get an MRI to confirm I had MS.

I have had employers, friends and family tell me that I am just lazy. When I finally got the MS diagnosis, my doctor said I likely have had it twenty years given the lesions on my brain. I almost lost faith in medicine and certainly in friendships and the like.

My last job had me flying back and forth to China every month for four years. I negotiated contracts with every major company in China on their behalf. All the time I was in pain, couldn't do math in my head anymore, had double vision, they let me go because they said I wasn't working up to their standards, that something changed for me and I was always not feeling well. I took too many days off for supposed migraines; I felt used and discarded.

Friends told my wife that she should leave me that I was always tired and she was too young to be with a sick man. When my exhaustion and depression got so bad that I couldn't brush my teeth, I had to tell people no to an invitation to hang out or go to a play or party. No one calls me anymore, I literally have lost more relationships then I can count. I have learned that people don't want to be around someone who is chronically ill.

I could hide my suffering well enough earlier in the progression. No one knew how much pain and discomfort I was in most of the time. My ability to suffer well has become a badge of honor. As my symptoms worsened over time and I needed a cane, I couldn't hide it anymore. Then something happened, people offer me a seat on the subway, I get to board planes early. Suddenly I was receiving empathy. Now everyone around me could see that I had a real problem; I was tripping and falling in front of them.

Human beings are such visual creatures, not even the doctors trust you when you say something is not right. Not till they see the MRI image do they believe. I am so sorry that any of us have to experience the callousness of the human experience. It is easy for most of use to discount another's thoughts or feelings if they don't align with our beliefs or well-worn meanings. I for one see people through the eyes of suffering and relate to others through the lens of the human experience. Now more than ever.

My oral response to the "all in your head" comment is typically, "No, part of it is in my spinal cord."

Internally, I've thought of framing some images from an MRI, nicely backlit and hung for all to see.

The story is told of a little boy in church with his family. When he stood up on the pew, his father told him to sit down. When he refused, his father finally picked him up and placed him next to him, this time in the seated position. Crossing his arms, he defiantly said, "All right; I may be sitting down on the outside, but I'm standing up on the inside!"

After more than 50 years, I'm still standing up on the inside, even though I'm sitting down in my wheelchair.

Or on occasion lying down on a hospital bed.

Because I know my position, I expect others, and especially physicians, to learn it from me if they cannot initially see past what they see on my outside. The way I see it, I have an opening for a physician or other healthcare provider; it reads: must be willing to enter into a short-term (or long-term) partnership with me to:
1. take a full and comprehensive history from me, through the methods which currently work best for me, oral or written, including but not limited to any medical records or statements from previous providers which I may provide. (In my area, personal physicians are persona non grata in EDs and acute care hospitals. Cross the threshold and the patient becomes the property of all-knowing, all-seeing "hospitalists" who have no need to hear from any other physicians.)
2. work to solve the medical mystery of the moment. If you are a neurologist, there's no need to diagnose me with MS all over again.
3. recognize my intelligence when it comes to MS and basic medical things and if in doubt ask me to verbalize my understanding of what you need me to know.
4. see working with me as an opportunity to learn more about MS. Even living with someone who lives with MS gives you experience with one person with MS, caring for 30 people who live with MS still only exposes you to 30 people who live MS. The variability characteristic of MS truly means there is no such thing as a typical case of MS.
That being said, a rash is never a symptom of MS and so are many other symptoms. The problem arises when a new, existing or worsening symptom may be a result of MS or some other serious problem. I may even have wrongly attributed it to MS. If it fits with something about which you are concerned, let's follow up on it.
5. maintain a pleasant demeanor while we work together. If working with someone with MS is somehow distasteful, frightening, makes you irritable or angry, you need not apply.

Thanks, Christopher,

My immediate response to the idea of laminating AND getting a signature was "Get the signature on a plain paper copy; it's too easy to wipe the writing off of laminated paper!"

I can't say that I've ever confronted — and they would feel confronted — any of my personal healthcare "employees" with a contract which both of us would sign. And I do believe that I have, all patients should have, a similar working list of our own responsibilities to uphold in such a relationship, even if it is not recognized by both parties as a contractual agreement. So I look at both sides to evaluate how the relationship is progressing, how it could be improved, and whether I should/could say anything, hoping to make the relationship/partnership stronger. We don't have to come away as best friends; the goal is to do everything we can to improve the quality of my healthcare. I would like to end the relationship, whether it lasts as long as a visit to the ED or for many years.

@Ed, I'll be happy to share this elsewhere; can you recommend the most useful place(s)?