Write hard and clear about what hurts. – Ernest Hemingway.
Since I first became really ill with autoimmune disease in 2012, it has seemed as though diagnosis have been tacked on and taken away as new symptoms have presented, an ongoing medical guessing game. This isn’t unusual for spoonies to experience. It can take years to arrive at the correct diagnosis, while the actual underlying disease worsens because it isn’t being properly treated.
That said, this post has taken me several days to work up my nerve to write (I just wasn’t ready) – and the research for it has been hell at times (I’ll share more about that later in this post).
First, let me say that what I have recently discovered is that, while I definitely do have a rheumatological issue (the RA I’ve written about at length), it is the CRPS and stunning nerve pain as well as some other symptoms that have brought my primary problem to light. Of note, it was actually discussed a few years ago and somehow “dropped,” but it has now resurfaced, much worse, and we realize that it is actually the primary problem with anything else being secondary.
It seems that my primary issue is multiple sclerosis – and this is not new.
Needless to say, coming to this realization has been a lot to get my head around – but I’m there now. So I’ll attempt to share my specific symptoms as well as the steps that were missed to getting me here – and also to share a bit about MS in general and what I plan to do as I wait on new doctor’s appointments (I’ve had to give myself a crash course as well as it has been years since I’ve dealt with MS with patients in any major way).
- It’s worth mentioning that I’ve had migraines for years – but they had improved significantly until recently. Then I developed a bizarre type of headache involving my eye movements. Those headaches have been helped – but not resolved – by increasing my steroids. STILL, every time I move my right eye, I am having nasty pain above and behind it. It turns out that this is MS related.
- For the past several months, at night, I’ve had blurriness in the center of my visual field. It is so pronounced that I can’t read when it occurs. I attributed this to my profoundly dry eyes, but, no. Also, MS. 😦
- I drop everything. This has been an issue for years – but has gotten worse.
- I have some serious balance issues.
- I have severe pain in my lumbar and sacral spine. This has been an issue since 2013.
- I have short term memory problems that have worsened. Lists everywhere!
- I have trouble “finding” my words at times – and it has worsened as well.
- I am experiencing a problem since this flare started where I know what I mean to type but my fingers aren’t always typing it. Very frustrating.
- While I attributed my heat intolerance to regular autoimmune issues, MS heat intolerance is a whole new ballgame and it is with me. I cannot abide heat – at all. I ran the air conditioner through much of the winter. When our power was out a few nights ago, I was sweating buckets and melting down – because it was 71 in my house. It makes me deathly ill.
- I’ve had autoimmune fatigue for years – but this flare is something new. Sometimes I’m okay – and then sometimes, like today, I am literally falling asleep out of the blue, while sitting up, and dropping my phone in my food. Just wild.
- Of course, the CRPS is a major nerve malfunction. Incredible pain. And stabbing nerve pain. And whole central nervous system thing, since December.
- Bladder issues – I have interstitial cystitis so this is also nothing new.
- My physical reaction time has changed significantly.
- It sounds strange but my taste buds have changed in a huge way in the past six months.
- Of the million medications that I have been guinea pigged with, the ones that have consistently worked are, of course, the steroids to keep down the inflammation and keep me walking, and the nerve pain medications like neurontin that would work for MS.
There are plenty of other little things but that is the jist of it.
This was discussed as a possibility a few years ago – and then let slip through the cracks unfortunately. I’m glad it is being addressed now – but I hate the treatment time that was wasted.
As for getting my head around this, I am okay – always forward, right? – but this has been difficult.
While doing some research to decide where to start my self care and also what I wanted to share in this post, I watched a few documentaries that were really helpful but one was just HARD.
Living Proof is about Matt Embry’s MS diagnosis and his journey, along with his family, to find the best approach to treating him. Through diet and lifestyle, he has been healthy for twenty years. It’s amazing.
What was so difficult to watch was the condition of some of the other people with MS in the documentary. Very frightening. Still, it is reality.
It only serves to drive home the urgent need to find what will control this.
I also watched:
It features the work of Dr. Terry Wahls (who has MS) and Sarah Ballantyne PhD and was really helpful as well.
All of these people advocate basically an autoimmune paleo approach – which I supported before, for spoonies, but now I definitely am much more focused on it.
So, as our friendly neighborhood nerd, I am reading Sarah Ballantyne’s textbook right now. . . 😉
I also have about a million videos and documentaries saved to watch.
In the next few months, there will be neurology appointments and probably PT and I’m sure other tests too. And I’ll keep trying new things as I find them too.
And, as always, onward.
Be well, everybody.
Grace and Blessings.