Unexpected Wonderful News for Me

 First Post of the Day (a Horsey One is Coming!)

Finally, finally, FINALLY, I have a diagnosis for that eight months of crushing headaches, speech slurring, numbness and paralysis in parts of my body, word recall issues, and more. 

I have had so many appointments with doctors and neurologists here and in Indianapolis and none of them were able to help me. It was a very rough eight months.

And then yesterday I met with a physical and occupational therapist (PT/OT) and unexpectedly got a diagnosis. And honestly, I consider how I got that diagnosis to be a miracle. Here is the story.

Just after Halloween, I was playing tug with Pepper. Not one of my better ideas, I had already been diagnosed and received treatment for rotator cuff issues. Pepper gave a good jerk, my shoulder popped, and that started the turn of events that would lead to the diagnosis.

After Thanksgiving, the pain and inability to use my right arm got to the point where I finally called my physician. I received  a referral to an orthopedist, saw him and got a diagnosis (yep, rotator cuff and biceps tendon damage again!) This led to a referral to Physical and Occupational therapy (PT/OT) as insurance would not cover surgery unless I had tried to heal via that route first.

I was told that the PT/OT department would call and schedule me. I waited a week and never heard from them. I called the ortho's office and they put the referral in again. No call from the PT/OT department again. Finally, two days before Christmas, I called the ortho again, told them that I was still waiting, and asked to go to a different place for the appointment. They switched the referral and I had a phone call and an appointment for January 3 later that afternoon.

Yesterday morning I sat down with the therapist and she did a routine medical history intake as she began. When she asked about any numbness in my hands or arms, I told her about those debilitating migraines I'd had and the numbness I'd experienced when they happened.

She asked more questions about that whole experience, and when I said that no doctor or neurologist had ever been able to give me a diagnosis, she began asking me if I had had certain symptoms, running through a list that she had pulled up on her computer. I had had almost every single one of them.

"Sounds like what you are experiencing are hemiplegic migraines," she told me. I'd never heard of them, so she explained what they were and what she described was EXACTLY what I had experienced those eight long months.

But how did she know about them and my doctors did not?

Turns out her specialty for over fifteen years has been stroke diagnosis and treatment, and hemiplegic migraines mimic stroke symptoms. They are extremely rare (according to the American Migraine Foundation, research shows that out of about 1 billion migraine sufferers worldwide, only about 100,000 people  have hemiplegic migraines.) Thus it is very rare for a doctor to ever encounter or treat them. 

I was so happy to know what I'd been experiencing that I cried as she printed off information for me on hemiplegic migraines. I came home and did research online, and the more I read, the more grateful I was that she had pointed me in that direction. (There are some migraine medications you should not take if you have this type of migraine because they can actually trigger strokes instead of help your migraine.)

So, what was the miracle in all of this? Well, consider that after trying for over two weeks I could not get in to see a PT/OT at the first place, and as a result ended up being referred to the  PT/OT specialist in stroke recovery and management at the second. What are the chances of that? The one person who could help me figure out what I had and how to proceed? And I just "happened" to be assigned to her care? (She did start treatment for my shoulder, too.)

I don't call that an accident, I call that a miracle, and I thank God for it.

Documenting symptoms for my doctor, January, 2023

Here are some links that describe this type of migraine if you are interested.

American Migraine Foundation

National Organization for Rare Diseases (Click on "view full report." )

Cleveland Clinic

I'm working on the second post of the day, so stay 'tooned!