Not just MG

When you think about someone with a chronic illness, for example MG, what do you think? Well, that they have MG. But often, other diagnoses come along with that, sometimes many many many other diagnoses. And that really complicates things. MG is tough by itself, but add other things to it, especially ones that contradict treatment, and it can become a real mess. Sometimes people will say "oh well I know someone with MG who is doing just fine." Again, we are all different. But on top of that, do they have "just MG" or do they have more than that? My guess is probably "just MG" and possibly maybe one other thing that is not so serious. So keep that in mind. Many of us are trying to fight multiple diagnoses at the same time and it's not such a cake walk. We speak of MG (or whatever chronic illness we have) first/most because it's most serious and/or the rarest and needs awareness and/or what is currently the biggest struggle.

As time goes on, the full scope of my health is being laid out. This took many years and many misdiagnoses, but I now have a pretty good idea of what all I have. Hopefully no more gets added to that list. So for now I'm going to take a moment to share what is going on 1. as an update to any family/friends who read my blog to stay informed specifically on how I'm doing and 2. as awareness and educating in demonstrating how health problems don't mesh together and makes it all the more difficult to navigate.

Here's my list of diagnoses proven through multiple tests/treatments/response/etc:

Myasthenia Gravis (MG)
Dysautonomia and specifically P.O.T.S.
chronic/recurrent Epstein Barr Virus
Immune Deficiency in what fights off pneumonia, strep, sinus and ear infections
blood clot disorder
back problem

And these are diagnoses not proven but assumed to be part of the problem:

MAST cell activation problem
Candida
Adrenal fatigue

So what do we make of all this?

Well MG is the most serious and if you haven't already, read all about it on the page tabs above. In short, the more I use my muscles, the faster they stop working for me. This includes not only arms and legs but breathing, swallowing, seeing, voice... things you don't typically think of using muscles but you do. This is why I may look totally "normal" when you see me but if you keep watching and I keep going, I will get weaker and weaker. If I get too weak, I land in the hospital and there is the risk of needing a ventilator to breathe. There are a large number of medications that make MG worse, including common antibiotics, reflux meds, pain meds as well as many medications used to treat...

Dysautonomia/POTS- treatment and medications for MG and POTS can be very different which makes it very hard. Dysautonomia/POTS affects your entire autonomic nervous system- breathing, heart rate, blood pressure, digestion, vision, temperature, so on and so forth... your whole body gone haywire, whenever it wants without warning. Standing in one place is not an option for me because of blood pooling, nausea and tachycardia of POTS, yet walking fatigues me because of the MG.

Epstein Barr Virus- well you've all heard of mono. Apparently I at one point, unknown to me, got mono... but it didn't go away and stay away like it does for most. So basically it's like I feel like I have mono over and over and over and over. Try doing anything when you have mono. Now imagine feeling like that pretty much every single day. I never know whether its the chronic EBV, MG or POTS, but that's how I feel. This is also known to possibly bring on both MG and POTS, so this may have been part of what set it off, along with the pneumonia.

Speaking of pneumonia- I just recently found out I have a deficiency in what protects people against pneumonia as well as strep, sinus infections and ear infections. My body doesn't fight like it should fight and therefore I can very easily catch any of these things. Thus, very very important I stay away from anyone who is sick. If I were to get sick with anything, it would set off the MG and POTS worse. A cold to someone else is a trip to the hospital for me. I could get the pneumonia vaccine but there is no guarantee it will prevent me from getting it and it puts me at risk because of the serious side effects I and many other MG/POTS patients tend to get. I've been really back and forth about the decision on this.

Blood clot disorder- I found this out after all the testing they did following my pulmonary embolism. What this means is I am more likely to develop blood clots than "normal people." It is not one of the most serious ones so I do not have to be on blood thinners for life, but I do need to give myself shots on any trip more than 2 hours. Not fun. What this means in regards to MG and POTS is I really should avoid IVIG, a common treatment used. Also, plasmapheresis is more of a risk for me because of the central line into the neck/chest and risk of clots through that line.

Back problem- well this was something I was apparently born with. I have a physical problem with my lower back and also scoliosis. This could be playing a part into everything because if muscles aren't strong enough, my back has to do things in a weird way, and then if my back does things in a weird way it could make my muscles work harder. When my lower back problem flairs up it is the most painful thing and I can't do anything but lay flat and not move. Because of the MG and POTS I can't take much of any pain killers.

MAST cell activation problem- one I am still learning about and don't fully yet understand. This could explain my extreme sensitivities to everything- medications, scents, fumes, allergens, foods, etc. Basically something that has to do with histamine in your body isn't working properly and reacts to many many things as allergens bringing on all the allergy symptoms with worse case being anaphylaxis. I was given an epi-pen but hope to God I never have to use it. The amount of kleenex I go through is insane. This is being treated with two types of histamine blockers but I still have to stay away from any triggers, which are many many.

And then there is the most likely Candida and Adrenal Fatigue which basically long story short, my body is in a constant battle to exist.

So with all that listed, do you see how it can become extremely complicated to treat any one of the multiple things I have? And many with chronic illness have it even more complicated. MG has no cure. Remission is possible but not very common, and even remission it does not mean perfect- it means better/able to do a little more. Dysautonomia/POTS doesn't specifically have a cure but some (typically those diagnosed as kids/teens) can reverse it. Chronic EBV well no one really knows much about that and apparently there really aren't even any medications to help it. Blood clot disorder- no cure/reversal. This is why it is called chronic. These things don't end. This is why, right now, I'm pretty much not receiving much of any treatment. There isn't much that can be done. This is why I'm not any better. This is my life. So I've taken it into my own hands in a way. What can I do for myself? I'll answer that in my next blog post.

Thanks for reading... glad my brain returned to allow me to write again. :)