Diagnosis update!

 

It’s been a bit since I’ve posted and mostly it was due to medication ups and downs as well as the holidays. But I’m back and the news is good! I hit a slight bump in the road, but as soon as we’re over this one we’ll be back on track.

Having had more testing done my Neurologist and Rheumatologist have agreed on a final accurate diagnosis. I bet you didn't even realize I didn’t have one, huh? It’s true, this surprised a lot of people. But the reason I couldn't get helpful treatment was definitely affected by the fact that they didn’t know exactly what was wrong and why. We had a broad spectrum diagnosis and some ideas but now I think we've got it all.

So this particular journey that started in November 2017 with a complete neurological breakdown has come full circle to a diagnosis of Lupus with Autonomic Neuropathy. That’s the big diagnosis with little ones branching off, of course, like they do when you have an illness, especially autoimmune. So, yes, they finally officially put the Lupus stamp on me and acknowledged that it was the cause of the neurological and other issues I’ve had for 3+ years. These were the issues that were the most debilitating: muscle weakness and fatigue, the unrelenting leg pain, lightheadedness, the brain fog, low blood pressure, dizziness, lack of balance etc, etc. These are what has kept me basically bed ridden for 3 years. 

The move to Hawaii helped many things; because of the inability of my cardiovascular system to adjust quickly to temperature, the temperate climate here is perfect. My overall pain level is better and more consistent of course from the warm weather, so I can do more active things, my stiffness is better, as well as the Raynaud's symptoms. 

The thing it didn’t get rid of was the feeling I would collapse at any second. Feeling like I had 100lb weights tied to all of my limbs while also being dizzy and lightheaded. Like constantly being on a boat filled with jello in choppy seas. You can see why I had a hard time getting out of bed. 

We left off last time on the adderall and ritalin train. I am still taking ritalin, but it made me feel like I had energy but my body couldn't use it. Like all it was doing was helping me push through the weakness and fatigue and dizziness, not actually helping them. Preferring to treat the actual cause/issue, back to the neurologist I went. 

I should interject here that my husband is a genius and gifted at interpersonal relationships in the workplace. He suggested that I get more personal with my neurologist and tell him that I needed his help and that he was my partner in trying to spend more time with my children, and to really explain emotionally what I was fighting so hard for, that being my kids and husband. I tend to stick with the facts and the science, so this was a new approach for me.

 I think it worked like a charm because from then on my neurologist gave me every test I asked for and seemed to listen to and answer my questions more without hesitation. He explains things to me rather than just saying yes or no, and for me personally that is huge. My personality is to want to know every detail. Once it's in my head I can't stop until I fully understand what it is and why. Once I have the answer I will stop bugging you [ie my drs]. But until then being my Dr is probably quite annoying. I want to know the pathology of every disease I have and the underlying physiology of why I’m taking a certain medication. Just “it should help raise your blood pressure” is not enough. I need to know how, and I will go all the way to how certain parts of the body function at the basic cellular level if needed. So, yeah, annoying, right? 

But it all led to this final diagnosis and treatment that may actually help after 3 years of really just neurological hell. 

I’m not cured obviously, and lupus is in itself a tough diagnosis with many complications and concerns, but my entire motivation and goal through these last years has been just to get a quality of life back. In all honesty I didn’t even care anymore how long or short that life was, as long as I was able to live it. 

Then Lupus with autonomic neuropathy and sensory ataxia came into my life. I can treat something when I know what it is! I can adjust whatever needs adjusting, I can change my diet, take medications or have surgeries- there are possibilities again...And that feels amazing. 

It also brought a slippery slope of hope that can be a very dark place to be. But that will be a different post. This is just an update. 

So! I now take a new medication that increases my blood volume, in addition to a medication to constrict my blood vessels. Those seem to have stabilized my blood pressure which has helped the weakness. It's almost been a complete game changer. I have gone weeks now without the muscle weakness, the feeling I'd collapse or walking through molasses with weights tied to my limbs. Weeks! For the first time in over 3 years! It's almost too good to be true...

Then, I broke my neck. So we had to take a little detour through that little hiccup.