Broken neck detours...

 I feel like I need to clarify something. As excited as I seem over this diagnosis, it's been coming for some time now. I've been testing positive for lupus for 3 years now. And most of you are aware that I went to the Stanford Neuroscience Autonomic Nervous System Clinic and saw one of the top specialty physicians I'm the country for. He is the one who diagnosed "cardiovascular autonomic neuropathy". That was almost 2 years ago. So, it's not that I didn't have a diagnosis per se, it's that there was still investigating going on and testing. there was always something more to test, more to narrow down, more medications to try in a diagnostic manner. And as excited as I seem over this diagnosis, the real excitement for me is just to move on from the phase of tests, and questions and new drs. This changes absolutely nothing about my treatment or symptoms. 

Several of the problems that I have can only be treated symptomatically. Meaning there's nothing you can do about the cause of the problem but you can treat the symptoms. So because of the age of 44 I have urinary incontinence, lucky me, I have to see a urologist to try to figure out how to manage that. Because my blood pressure and my heart rate are not regulated by my brain I need to see a cardiologist and I need to take medication to help those things happen etc. This is the autonomic Neuropathy side of lupus.

So it's not as stunning as it seems, sorry. Lupus is not good news and I do not mean to belittle it in any way. Lupus is a scary disease. It can cause my kidneys to fail, and we know my kidneys have already started causing me problems, and it can cause the neurological issues mentioned above along with many others including lack of balance, dizziness, numbness. And my hair loss, which frankly is really pissing me off, not to mention a great deal of pain and fatigue. So I don't want to make light of this diagnosis. It just feels to me like I can start a new chapter with a clean slate and the Drs I currently have and really get to the work of figuring out how to manage my symptoms through exercise, diet, medications, supplements, hydration etc. Which is where I excel…. if I do say so myself. 

Now on to the broken neck. I know it sounds hilarious which is why I put it in the last blog post, but I didn't obviously break my entire neck. Because that would cause a lot more serious problems than just a lot of pain. What I did was break a piece of calcified ligament in my neck in my spine. The neck spine is called the cervical spine or the c spine. It stretches from the top of your shoulders to the brain stem and they are numbered. Many of you have heard of the cervical spine because it is always where these heinous injuries you hear about where people are paralyzed etc take place. Those injuries are to the actual spinal chord further up around C2-C3 (C1 is the very top at your brain). Mine is not serious, it is at C5-C6 which sits at the top of your shoulder. So it just causes a lot of pain. There is a joint at the back of your spine called a facet joint, it is the hinge joint on each vertabrae that lets you bend your neck forward and back to a certain degree(if you're really interested- feel the bumps on your neck/back- the facet joints are on either side of each bump). That is where I messed myself up, and apparently there was already damage starting there just because I'm old. They also found that my ligament along the spine is turning to bone, it's called OPLL, but that's an issue we'll think about in the future. I have enough stuff to worry about right now. It is technically caused by ankylosing spondylitis in my case, but I'm told you don't have to have AS to get it. 

Anyway, 4 days ago I had a fluoroscopic injection, which is a steroid injection under x-ray directly into the spinal facet joint. It has to be under continuous xray so he can see the needle and exactly where it's going. I've had these before several times in my lower spine before I had the surgeries to fix that area, so it really was not a big deal. I am happy to say that 4 days later the pain is starting to subside.. But hey that's what I get for turning my head to the left. Yep that's right, that's all I did was turn my head to the left to look at my son and crack couldn't move my neck after that and we started finding people to watch the kids while I went to the ER. Yes it actually warranted a trip to the ER. If you know me you know that I will do everything I possibly can to avoid a trip to the ER so that should tell you just a little bit about how much it hurt. Man that was painful. So now neck muscle strengthening exercises have been added to my PT and we can get back to the real issues!

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.