In the Trenches of Autoimmune Diseases with Joshua

I medicated , retired out of there and I took this job here in Romania just a little over a month ago .

It turned out to be not fibromyalgia that was one of the first things I was diagnosed with but turned out it was more severe than that .

I had just moved to Washington State and from Fort Bragg , north Carolina , and then I started to enjoy Washington State and then I couldn't enjoy it because I had a these symptoms pop up and basically what it was was I started getting a random occipital nerve pain that would just come and go very , very rarely at first , and then over two , three weeks or so ,

it just started to become more common and more severe , ended up getting seen just for that . But then it's quickly snowballed into migraines which I had never experienced migraines before , just chronic fatigue and then muscle spasms , numbness in certain areas of my body and it just it just spiraled into , I would say over the next two or three months .

Every week I would experience anywhere from one to three new symptoms . You know I would . I started to have just it just seemed like all my functions of my body just started going out of whack . I just go in haywire , but yeah , I would .

I would say within two to three months I was experiencing most of the symptoms that I am currently experiencing with with the multiple autoimmune diseases that I have .

There's something wrong , I'm going to research it and try to figure it out and fix it , you know , no matter what the doctors say . So I did Google my symptoms , even though they say not to do that , and my sinew gravus wasn't even something that I had heard of .

Even after constantly googling my symptoms , basically until I got well , until the neurologist I was seeing thought it could be a possibility , and then I realized what it was . Same thing with small phoboropathy I that one had to be explained to me once I was diagnosed with it .

That's that's my knowledge of it , and so my muscles weren't firing off properly and that is that the symptoms I was getting from that . Well , there's a lot of symptoms , but it causes , you know , muscle spasms .

The numbness was more from small phoboropathy , which I'll get into that , but muscle spasms , the , the pain , the fatigue , and because of muscles were firing off , or regularly it would cause , like you know , neck pain , back pain .

I started having to go to the chiropractor because it just sort of was pulling things out of alignment and I also severe soreness , like the soreness .

Like , for example , I could go to the gym and just do like 30 minutes on the elliptical , which should be no problem for me , but then I would have to take like the next three days off and I wouldn't even want to get out of bed next day . Waking up and getting out of bed was became very hard . Just that simple task .

That's something that mycenaeumgrabis causes . And then , yeah , that feeling that you get whenever you know your muscles are about to cramp but it's not quite a cramp yet that all over my body , that's what I was feeling , and so exertion was very hard .

If I overexerted I would feel that and then , even when I was not exerting , I would get muscle spasms and it start , you know , going crazy . So , yeah , you know , before my diagnosis I had no idea what was going on and you know , so I was kind of freaking out about that .

But as far as the small fibroeropathy , what that is is also an autoimmune disease that affects the microscopic nerves . That's what small fibro nerves are , the microscopic nerves . You have the big nerves , which are not microscopic , and you have the small nerves , the small fibro nerves that are like the microscopic nerves and the microscopic nerves .

They control all the autonomic systems in the body .

So your heartbeat , your digestive tract , things like that , as well as your ability to feel , things like distinguished from hot and cold , and that was what was causing like a lot of the numbness and a lot of the I mentioned earlier that it seemed like all my symptoms in my body were just like shutting down or , you know , just not functioning properly and I

ended up getting , like , as a second order effect of small fibroeropathy , a diagnosis of like irritable syndrome . You know , sometimes my bowels want to work and sometimes I don't , but yeah , like I mentioned , the numbness I mean you can just imagine like anything that is controlled autonomically started to become an issue and so it's . That was a big deal .

And then the cause for that the number one cause for that , for small fibroeropathy , is diabetes or pre diabetes , and I was tested for that and I don't have that . So the cause of my small fibroeropathy is still unknown , but it most people . If they are diagnosed with small fibroeropathy , the next step is let's look at diabetes , because that's the most likely .

two children currently six and four years old .

You know , you figure that you know the day that you find out you have something like small fibroeropathy or mycinade gravus is a bad day for me . It was a good day because I finally know what's wrong with me and I can start to get treated for it .

But yeah , the the hardest time to handle anything for me mentally and physically was the pre-diagnosis pre-treatment , pre-diagnosis I don't know what's wrong with me because I was so focused on my health and just worrying so much and anxious . My wife had to step in and really take care of things that I would normally take care of around the house , etc .

So you know , thank you for her .

You might not like the answer , might not like the medications , but at least we have a direction to go .

I mean I was , I saw about half the doctors there in that medical center and then on top of the several referrals that I've had off post , but yeah , in the primaries , from what my experience is , basically they were acting as gatekeepers to the referral process and that was a struggle just to get the referrals that I needed and it took me just continuing to go

to the doctor consistently to finally have them take me seriously and just to get the referrals that I needed . Like I said , I saw between eight and 10 different primaries over the course of , you know , two years give or take .

And I had maybe I know I had one that finally took me seriously and she wasn't even the most knowledgeable provider , she was an nurse practitioner and but like , I'll take a primary doctor or nurse practitioner , whatever primary care provider that isn't the most knowledgeable , but if they are willing to care and to help and give me the referrals that I need , then

you know that's that's a welcome provider and and I I called onto the provider and I went . I continued to go back to her , you know , once I realized that she's actually willing to help , and then going to the specialty clinics , once I got those referrals .

So I mean it was hard to figure out exactly where I needed to go because you know I was going to rheumatology , neurology , gi for the IBS and I mean there was . I saw probably over half of the specialty clinics in the in the medical center . There , like I said , there was even some off off poster forals .

But the neurologist , the neurology department , when I finally did get my first diagnosis , which I was diagnosed with fall polymorphathy before the myocinic grab is when I first , when I got my first diagnosis , that was actually on my second opinion .

I asked for a second opinion because I had already seen that the neurology clinic , one neurologist who was just absolutely dismissive of of anything wrong and you know this is very early in my symptoms , but I'm describing everything and and he he told me straight up like I think this is all in your head and yeah , and his , his recommendation and his notes were

like he needs to be referred to mental health , that's ridiculous , absolutely . And it's like , well , if it's in my head , you're a neurologist , like you know I'm seeing you because there is something in my head , you know . But yeah , I went back to that same .

So several , several months went by , you know , and I saw a slew of other different specialty clinics trying to get answers and then I was like in my gut , something was telling me like this is neurological , something . It's something neurological and I need a second opinion .

If you find a doctor that cares , hold on to him , that's my advice but cared , cared enough to run the tests that need to be run to get and I narrow down to you know supposed diagnosis .

And then , and so he , at first he diagnosed me with a small fibroenteropathy , based on the symptoms I prevented are presented , and then , but it only explained , you know , less than half of my symptoms , but he didn't tell me that at the time . He but he continued to dig and run tests and I had a feeling there was something else .

But that's when he sort of narrowed it down to mycenae agrabus . We ran a test .

It's called a small sorry , a single fibroenteropathy , where they put , they stick a very , very thin needle into , like the top of your forehead and just they have to get like 20 pairs of they listen to your , to your nerves and your muscles with a machine and basically you have to get 20 pairs to to really do the study .

And then so he spent like a couple hours after that , like just you know , running the crunching , the numbers and and it's all numbers based and basically if , if you're a certain number within a certain range and you're within tolerance and normal , and then if you're out of that , then you're , you're abnormal and you have a neuromuscular junction disease .

And so I was abnormal . I was actually severely abnormal . I started on a medication called mesonon , which it helps to suppress the symptoms , but it doesn't solve anything . It just it just helps the symptoms , you know , maybe become half of what they were .

But and then so I was on that for a little bit we did a second single fibroenteropathy just to confirm the diagnosis and the numbers went up significantly . So after that is , whenever he ordered this CT scan of my thymus and he wanted to see if my thymus was enlarged and the reason behind that is .

So they don't know scientifically how exactly how the thymus is related to myosiniae gravis , but they know that if you have myosiniae gravis and you have an enlarged thymus , removing that enlarged thymus in most cases helps to varying degrees to get rid of the symptoms , to either suppress or get rid of the symptoms of myosiniae gravis . So turns out .

So I got the CT scan turns out I have , or I had , a enlarged thymus , and at my age , you know , you're not even supposed to see it on a CT scan . Mine was two by three centimeters .

But mine was enlarged so he referred me to surgery . I had it removed and that was a whole pain . So luckily now they're able to remove it robotically . Before robotics technology they actually had to crack your sternum and like lift , like go up under your ribs that way to get to it , because it sits right underneath your sternum .

So it's a , it's a cardiothoracic surgery . But yeah , it took me about two months to recover from from that fully . But then once I finally recovered from that surgery , I did notice that my symptoms were not as bad Like I don't know .

Just one day I was like you know , it's been a while since I felt this pain or severe pain , and so about a few months after the surgery well , about four months after the surgery my neurologist basically does the same study , the single-fibre nerve study on me and my numbers significantly improved and they weren't normal .

They were still in the abnormal range , but they significantly improved and it's to the point where I no longer have to take the mesonome medication on the daily . It's an as-needed basis right now .

If you're not satisfied with what the doctors are telling you , if you think that in your gut that there's still something there that needs to be diagnosed or or treated , then keep pushing , Because I did , and it turns out not only did they find something , they found , there was a solution that exists for it , and it made me a lot better Not normal , but a

lot better .

But in my case , because there's no known cause of the small 5-metropathy , I just sort of have to live with it . But if it's progressing , it's progressing very slowly , so I'm able to do my job and everything without really having to worry about it .

And , like I mentioned , the weather is starting to change here at Romania because the weather is changing and it's getting colder now . And that's one of the things about small 5-metropathy is your sensitivity to heat and cold is different . I used to love the cold and now I'm a lot more sensitive to the cold . So that's one of the things .

And , as a matter of fact before and I didn't talk about the small 5-metropathy diagnosis and how that was made but it starts with just a routine neurological exam where they do basically a whole body neurological exam , and one of the things that was done for me was I laid on a table , the neurologist had a hot air lower hot air dryer and cranked it all the

way up , cranked the heat all the way up and basically he went from like my upper thigh all the way down to my feet and he would tell me , like , does it feel ? He would ask me does it feel the same throughout ? And turns out it didn't feel the same throughout .

Like around mid-calf I started to notice less heat and then when he reached my feet , I could tell it was still heat , but it wasn't like the scorching heat that I was feeling up around my knee , and so that's one of the ways that small 5-metropathy that's one of the symptoms is the ability to notice changes in temperature , as well as just sensitivity to .

It's weird , like in some ways you're more numb to it and in some ways you're more sensitive to it , but there's that . And then the ability to feel vibrations , which hasn't affected me yet .

It's just the ability to feel , because the numbness , the numbness I'm more numb in my fingertips and stuff like that now , and I notice it some days more than others and I don't know . I'm thinking the weather has something to do with that , but that's not scientific , I think .

So basically the next step I meant to say the next step after that neurological exam was once my neurologist thought that it was small fibroid neuropathy . There's a skin biopsy that can be done and to my knowledge it's like one lab in America that can do this and I found out it's like $10,000 per test but it was ordered .

Basically he took small skin samples all the way down to the dermis , from just throughout my body five samples and sent those off to this lab and they test or they look at under a microscope .

They look at the microscopic nerves in your dermis and then they take those same samples and then do it for the sweat glands as well and if they find any abnormalities in the dermis or the sweat glands on any of the sites , then you're considered positive for small fibroid neuropathy . I had on all five sites .

I was abnormal on my sweat glands and it actually got worse as , like , the further down my body , the worse it got . So that explains why you know when , during the hot air dryer or the hot air blower test , I was able to feel less on my feet than up on my knee , because it gets for me . It gets worse as it goes down .

I think the worst has ever gotten was like I was experiencing palpitations for about 12 hours straight , and that also can have to do with my thyroid . So , but at the same time this fall fibroids control the heart , the circulatory system , all those autonomic processes . So it's . You know it's hard to tell , it's probably from both . But but yeah , sleep .

I was actually diagnosed with sleep apnea and that's the second water effect of the myosinic gravus because it affects the breathing , specifically the outbreath . That's one of the symptoms I was having with , that is , I noticed I was having difficulty breathing .

It was harder for me to work out , I was kind of winded and I would have to concentrate on my breath a lot more , like it wasn't just like a . You know , you normally don't have to think about your breathing , but for me , at the height of my symptoms , it was like I had to think about every breath and sometimes I that's still .

That's the biggest thing I still notice is the breathing I will have to concentrate on my breathing , but yeah , so that contributed to my sleep apnea diagnosis and then the treatment for the sleep apnea .

The CPAP didn't work really because , you know , with the constant air pressure going in and the outbreath being the thing that's most affected by myosinic gravus , it really just made it worse to me , the CPAP , but anyway . So , yeah , that's affected . A myosinic gravus also affects vision , the ability to focus .

I started seeing double vision and it wasn't too bad to where you know I couldn't drive everything like that , but you know , I would just notice in certain cases I would just see , I would just see double , like double objects or whatever .

And the ability to focus became , became hard , had to , like you know , blink a few times from my eyes to finally focus and all that , and you know that can . That has the potential to cause a lot of , you know , safety concerns etc . Luckily the vision is doing a little bit better now .

The breathing , like I said , is the is the thing that I still notice the most . When it comes to the MG Fatigue , I mentioned that . You know I used to .

I worked out a lot every day , almost before or before my , my symptoms started kicking in and then I noticed I was getting more and more sore at the gym as my symptoms like started , I just ended up stop going to the gym altogether because , like I said , you know , I went from lifting weights , you know , an hour and cardio an hour every day to basically 30

minutes on the elliptical and that would bite me out for the next three days and waking up in the morning became a task and then just doing anything for the next few days after any sort of workout or exertion just became very painful and uncomfortable . Yeah , there's numerous second and third order effects from these two diseases alone that I have .

For the small fibroderopathy and , like I said , they found it in my sweat glands , if my ability to regulate my sweat is diminished , I can work out , go take a cold shower and then come out of the shower 15 minutes later . I'm still sweating because , like , my sweat gland is still open . Okay , yeah , the ability to regulate that is just diminished .

You know , I've just kind of had a tendency to put myself last and take care of everyone else's needs first , and by the time that's done , I am out of energy and I don't . You know I didn't have time to take care of myself , and but you really do have to prioritize yourself , and that's something that , looking back , I wish .

I and , like I said , I don't know if it would have made a difference , but taking regardless , taking care of yourself is important , and I was forced to start taking care of myself better once I started to get these . You know my symptoms and I don't know .

Sometimes I just wonder , like you know , was this my body's way of telling me like , hey , you've done enough , like you needed to take care of your body , it's time to take care of yourself ?

I had my thyroid tested and it was like just at a normal range and I was put on you know medication for like a week and then it was back with a normal range .

But then I stopped the medication , I moved to a different unit I immediately deployed , and then it just wasn't even a thought and I should have followed up to make sure that I was still with a normal range much sooner . I waited until all my symptoms started to like think about testing my thyroid again . So that's just one example of you know something .

I could have done better had I been thinking of myself and my health instead of the mission , the tasks and all that .

I write down affirmations , gratitude , and I'd log my wins . No matter how small or big , I'd log my wins . So that's the first thing . The second thing I'm gonna say I'm not just saying this because I'm on a podcast , but I'm gonna say podcasts in general .

Podcasts keep you sharp , you know , and and they , they keep you , they keep your mind occupied when you are experiencing symptoms . And in podcasts like yours , you know definitely , you know it helps , you know that there's you're not the only one and that there's others out there what's your favorite kind of podcast ?

Right now kind of on a self-improvement streak , so that's , you know , anything to do with mindset and anything like that is is really what I enjoy right now when it comes to podcasts .

And , you know , just getting those adjustments gets everything back in alignment and , you know , takes away a lot of the discomfort and the pain .

You know you , you have to move , you have to keep your body moving . Number five , and yeah , number five would be breathing exercises .

And not only does it help focus on my breathing because of the , the breathing issues that are caused by my synagravus , but it also helps with anxiety , and I was , I was formerly diagnosed with anxiety and as I was going through all this . But breathing exercises , that actually helps regulate or lower your heart rate and activate the parasympathetic nervous system .

You know it really . You know people , some people think of anxiety as like , oh , it's just a mental thing , it's all in your head . No , it actually has physical effects , it raises your heart rate .

It , you know it , activates the , the , the sympathetic nervous system system , which is your fight-or-flight , and whenever you have fight-or-flight for too long , it causes cortisol to really be released in your body and that in of itself . The heightened cortisol levels can create diseases that can create disease .

So it's really important to , if you have , if you're experiencing anxiety , to to control that , and so breathing exercises are one of the things that really helped me to control my anxiety absolutely agree with that one .

You just need to ever lease a hobby . That's that's why that's my bonus .

How do you maintain that positive outlook despite everything that you face ?

So both in getting the diagnosis and the treatment for the diet , you know , once I did get my diagnosis and that , like once I was diagnosed with my senior grabbis I was , I was satisfied with that like this explains my symptoms . So the rest of my symptoms that were explained , this explains it and that put my mind at peace .

It's like , yes , I have this disease , but you know it put my mind at peace . So that really helped me to stay positive is like I know that , like I did everything I could and that had the intended result . So that's that's number one .

Is I really I don't know me , you know I , if I know there's something wrong , I have to go attack the issue and fix it and that's that's what I did with my , with my health . Well , I should have , I should have done that as a preventative measure , but as a reactionary measure . That's what I did .

I really went and attacked the issue and and got after it and I wanted to fix my health , I would say In addition to that , in order to stay positive , you really have to extinguish limiting beliefs .

And you know because for a long time Before and after my diagnosis , I thought in terms of I can't do this anymore because I have multiple autoimmune diseases . Instead , you have to maintain the mindset of I can do this if I manage it properly . Can't is literally a four letter word .

You know , don't think in terms of can't , think in terms of can and , for example , I didn't think that I would be able to take on a job like this in a foreign country with all my medical needs and and turns out I can't . I just have to manage it properly and I'm thriving and I'm happy over here . I love what I do .

Sometimes you don't need to speak to anyone knowledgeable , you just need somebody to care Like . You just need the overall vibe , and so that really helped Just finding those people that were the right people to talk to . Just , you know , for support .

And , and I would also say , when I was going through my struggle , at the height of my symptoms , you know I was surprised at who some of the people turned out to be , who had the capacity to support me or was willing to support me .

For example , when I found out that I was to be medically separated from the army , certain people began to treat me differently because I became of less value to them . You know , whenever you're going through your the biggest struggle of your life , that's whenever you find out who your true friends are .

It's those who stick around and support you , even if they don't expect to get anything in return . You know they're truly just there to ensure that you'll be alright and they truly just want to help you through . And I would also say that as a male I I became .

I Was seen as lesser in the eyes of some , simply because it was inevitable that I would lose my job due to my conditions . You know , sadly you find out , a male's means of providing is taken away and some people would just see that as oh , you're worthless now .

You know , and and this is hard for me to say , but my own father says some hurtful things to me Essentially blame me for my diseases and stopped talking to me for about six months Once he discovered that I had a well-paying job lined up after the army , you know , after my medical retirement . Then he started talking to me again , you know like I said .

Absolutely . That was the biggest one . Oh , you know , we're , I mean we're .

I Don't know , I can't even put it into words it's almost easier to just be sarcastic or make jokes or Because they don't , they don't like what the answer is .

The most important thing is that you're there for them and that you are supporting them and sometimes you just need a vibe , you just need someone to just care . It might be because it's a guy thing that , like I mentioned earlier with myself , if I find a problem I want to attack it and go fix it .

And maybe I'm just speculating here , but maybe my father he's like me , he's the problem , he attacks it and goes and fixes it and it's like at that point I didn't have I think I did have a diagnosis at that point , but it's like he didn't know I'd help me . So he just kind of in his mind it's like I don't know , I don't know what he was thinking .

My mind doesn't even think like that . But , like I said , that's just one example of a surprise on someone that you expect to be there for you but it just wasn't or didn't give you what you needed whenever you were at the lowest point . I was at the lowest point in my life , to be honest , and I kind of had to just carry on with what I got .

It breaks everything down by what condition , like based on your conditions , if you can look up , you can even talk to people there . Like I've chatted with people there who've helped me understand , like basically , what my conditions would fall under in terms of ratings , disability ratings , et cetera . So that was very helpful .

And then , something that I just came across for MyCineagrabus specifically is the MyCineagrabus Foundation of America . They have I just recently became a member and they have a lot of good stuff on their website and it just seems to be the community that I didn't have whenever I was going through .

You know the height of my symptoms , but it's a very good community resource . Like I said , I'm very new but it's very promising to me . I'm going to get involved , for sure .

The doctor is telling you one thing , but your gut is telling you you know something else . I've had , I've had about 75% of the doctors . They were wrong about something , and you know . But because my gut was telling me , no , like you got to keep pushing or something else here .

You know , I kept pushing and turns out , yeah , there's a whole , like two other diseases that you know would have otherwise gone undiagnosed . You know , had to not continue to push and find the right doctor . And then , once I found the doctor , push him to you know , find out what's wrong with me . So that's , that's something .

And another thing I would say is sometimes you just have to quiet the noise . Seems like everyone who doesn't have an autoimmune condition has advice about your autoimmune condition or your health in general , like how to manage your condition . I had to quiet that noise and just listen to my body . You know . Tune it out Again . Listen to your gut .

Well , the best place for you guys to find and follow him is over on LinkedIn . I'll make sure that we get that attached , but I might push him and nudge him a little bit to be a little laughter on Instagram .