Raising Awareness and Research is Crucial

This past week has been a disheartening one. Prior to this week I was looking forward to it because I had doctors’ appointments and I thought I would get answers. I was wrong with that assumption because I am now more confused than ever.

It began with my rheumatologist. She concluded that she is not sure if I have Rheumatoid Arthritis after all and that it doesn’t make sense because some tests are positive that would contribute to RA and then some are negative. Therefore, I have no idea what is going on in my body at all.

My Rheumatoid factor came out positive, inflammation came out positive, Vectra DA was high, and my C reactive Protein was elevated. I clearly have visible inflammation on my joints with Rheumatoid Arthritis symptoms and RA runs in my family.

I don’t know what else could be causing my symptoms and neither does my rheumatologist. She is very confused and suggested a musculoskeletal disease. She then suggested notifying a neurologist to give me an EMG.

Ironically, the next day, I had an appointment with a movement disorder specialist at a neurological clinic. As I entered, I was hopeful I would get some kind of clarity. Instead, I left being even more confused. I mentioned what the Rheumatologist had suggested twice but she never addressed the concern.

Then she suggested it was psychological after being told that I had already ruled that out. However, she was skeptical like all doctors have been of my case. She shared her thoughts on me having Functional Movement disorder (FMD).

My family and I asked her questions pertaining to this but she didn’t really know too much and didn’t give a clear answer.

Therefore, I’ve done my own research and I concluded based off my sources that some compare it with conversion disorder (CD). Conversion disorder is what I was assumed of having originally but got ruled out. FMD is an interchangeable word with CD but I believe it is a bit different and some just happen to think they are the same. According to sources, FMD means your nervous system isn’t working properly but it’s not damaged either. I also gathered that basically your nervous system is reversing itself and your brain is beginning to think that it’s normal and supposed to be that way.

There is not much research on FMD at all and it is not clearly understood. When researching FMD, sources mostly had the words “Psychogenic movement disorder” next to it. I felt like that was inaccurate because based off some reading I’ve done, the cause is unknown.

According to the neurologist, it can be reversible but chances are slim.
 

I am not an expert and I may be wrong on this information but I’m just basing it off of my own research. I don’t know if this prognosis is correct or not. I am still going to continue to see physicians till I get a definite answer.
 

However, since there seems to be not much awareness on Functional Movement Disorder I decided to include it in my writing this post in hopes that it will at least aware one person.

I feel that just because an illness is misunderstood or not understood at all, that physicians  automatically think it is from the mind and psychological/psychiatric. 

  I believe that just because an illness has a lack of understanding or not enough awareness/research doesn’t mean that it should be seen as an origin that is not physical.

Throughout history there have been illnesses where physicians didn’t understand and labeled those with unknown illnesses as “crazy” or having a mental origin. Now, because of research and understanding, physicians know that they were never “crazy” and that the illness did have a physical origin but it was simply misunderstood and not researched.

I believe the same goes for FMD or any other illnesses out there that are simply under researched, complex, and misunderstood. It’s horrible that there are people suffering from illnesses like this and yet because of its complexity and perhaps other reasons that scientists and physicians keep in hushed tones and don’t research.

There NEEDS to be research but yet so many people are unaware of illnesses like this and we need to raise awareness.

I remember one time watching an interview on this one illness that is unknown and has had hardly any research at all and when asked why there wasn’t any awareness/research, the interviewee laughed and replied “There’s no celebrity with this illness that’s why.”

When I heard this I wanted to scream. That is so unacceptable!

An illness doesn’t get as much awareness/research as it should simply because a celebrity isn’t diagnosed with it?

Imagine this: Suffering every day, no treatments, no medications, no support, and no answer as to why.

That is what is happening to people every day and no one is speaking up or raising awareness. That seems insane to me and I pray to god that it changes so there can be more answers.

We all live on this planet. It doesn’t matter if we’re in different countries, continents, or time zones. We need to unify and raise awareness along with help promote research. We need to help one another out and stop segregating from one another.

As you can see I am passionate about this and I wish I could be someone to promote this all the way till it happens but I can’t. I’m only one person, I need YOUR help. Mention this issue to someone, anyone, just mention it so perhaps one more person can be aware of this issue.

I know I’m probably starting to sound like a motivational speaker but I’m not. I’m simply a young woman who is dealing with a lot and who is constantly becoming aware of these illnesses and the issues that arise surrounding them with the hope of solving her own mystery.

My illness (es) is a very challenging puzzle. Each time I feel like I’m going to make the fit to add to the developing picture, it turns out it’s not a match and then I end up having to take a part the pieces that I thought were a match and destroy what I thought was the developing picture.

These events have been disheartening but I need to do what I usually do and that’s fight. Help fight with me in the issues surrounding FMD or any other illness that is misunderstood. Help me do this and perhaps we can make someone’s life a bit brighter.