Tactically Attacking Ataxia
I want to start by saying that while the ataxia may physically affect me, it also affects my family and friends. This is why I chose to say our story, because it is not easy for any of us. Without our support system it would not be this easy to get through the rough times.
Our story starts in September of 2016, where I began to notice that occasionally my upper right abdomen would hurt. Some times stabbing pains and some times it was just and ache that radiated to my back. I did not think a lot of it considering I was an avid crossfitter and assumed at the time that it was due to working out. At that time, I was a police officer working crazy hours with minimal sleep, chasing children, and working out 6 days a week. Gradually in time I noticed that the pain became worse and then I felt like I had trouble running.
Now to most, this may not seem like a big deal, however; to me running came easy. I played soccer starting at the age of 7, military, SWAT, and police work. Running was apart of every day life and benefited my work also. This being said when my legs felt like they were in a vice grip and about 80 pounds a piece and hard to place one in front of the other. I began to worry!
I would complain to my workout partner and felt sluggish in my day to day tasks. I found it harder to get motivated. In the beginning of 2017 I began to notice that the pain in my abdomen was getting more severe. Also, noticed that urinating seemed to be an issue. This was not new to me considering in 2015 similar pain and urinating problems were common for the mass that was located in my right kidney. In July of 2015 doctors performed a partial nephrectomy to remove the mass that was just a conglomeration of blood cells that were cauterized in the base of the kidney due to the ureter collapsing. Things were back to normal after.
SO! when these pains came back I feared that there was something else going on with that kidney. in March of 2017 I ended up in the ER because the pain became unbearable. However, after several scans the doctors stated there was nothing wrong and sent me home and to follow up with the urologist. Which I did, and they stated there was a small block in the ureter again, but considering the pain I was describing it was advised that something else was possibly going on. This doctor scratched his head and sent me on my way.
I located an internal medicine doctor trying to think outside the box. I also contacted my gynecologist doctor because I had in the past polycystic ovarian syndrome PCOS and endometriosis. Which in the beginning of 2016 this doctor (who is AMAZING I might add) observed after some LONG struggling female issues tested for abnormal cells in my uterus and low and behold he highly suggested having a hysterectomy! SO... at the age of 29 I did what was needed before being worse than I was at that point!
Well, when you have the PCOS and endometriosis it is known that it is very likely the endometriosis can return every 6 months and can be everywhere within the woman's body!
After speaking with OBGYN in May of 2017 he did an appendectomy (found it was shriveled up and blocked of) and removed my right ovary (which the ovaries were kept during hysterectomy in attempt to not mess with hormones TOO bad!) . After this surgery the pain sort of went away, but a month later the stabbing shooting pain in the abdomen got worse. Pain in my legs and lower back became more noticeable as well. Around July of 2017 I am still working, wearing a rig belt that is approximately 25 pounds. I begin to notice that the pain was becoming so bad I would start to throw up half way through shifts. People on calls I was going to help were asking if I was ok. My body is at this point so slow that I felt sluggish and like my life was just in slow motion all the time. I had quit the SWAT team to spend more time with my kids, because I was feeling as though I just could not keep up.
If you know me, at all, this is like shell shock, RIGHT??!!
During all this time, in 2017 I was also going through renal scans with dye, ultrasounds, MRI's, CT scans, and bladder reflux testing.
MRI's showed that there were: Spinal stenosis, ruptured disc/ bulging disc/herniated disc in my lumbar and in my thoracic spine. In which I was sent to another doctor who was going to see if I needed some injections. At which time, I was advised that they were not bad enough and should not be causing me pain. However, he observed that I was walking "funny" and asked how long I had been walking this way. Also, if you know me this should be hilarious, because lets face it I have been pigeon toed since I could walk. Which is what I advised him. He stated he would do hip injections, but did not see the need to do any on the spine.
Once those injections were completed, my hips felt worse than before.
Being sent back to the Internal Medicine doctor she stated that it was highly likely I had neuropathy and possibly fibromyalgia. At this time she placed me on some medicines. Due to the pain and her not being able to figure out specifics she placed me on light duty. Considering I was having a hard time walking and standing. She stated that working at this point was not her concern and having that weight on the back I had was something she did not like. the medicines that I was placed on to begin with made my body swell up and retain fluids, She took me off those medicines and placed me on another one, which appeared to have no affect. In December of 2017 she kept me on the one medicine and added another (Gabapentin and Cymbalta). Within three days things went down hill and FAST!
On December 5th 2017 was a day that changed a lot! I was leaving light duty status at work when my speech became extremely slurred. A coworker said something did not seem right and made me go sit down inside. At this time, the scary stuff started. I began to have seizures! I do not remember much other than everyone around me seemed just as scared as I was! My head felt like it had an axe in the top of it. The light was killing my eyes, I could not speak like I wanted to or really at all! The next thing I remember I woke up in the bed in the ER wondering what I was doing there.
The staff was amazing and the support of my brothers and sisters in blue was unbelievable. Everyone seemed to be scratching their heads and no one really knew what to do or what was going on. When I say I don't remember, I truly don't! I was told about the scans and tests after tests,
The doctors told my family and friends that their thought was that I was under extreme stress and showed signs of someone who had been raped.
That's exactly what I said and same with my family and friends. I was still in and out with seizures and the family wanted a second opinion so they transported me to Houston. Four more days of being in their hospital and the same results. they suggested that I seek psychiatric evaluations. OH MY GOSH!
So we are all extremely frustrated and I am still having seizures. Which they were explained at pseudo seizures. however, the medicines were increased.
I forgot this part I am completely wheelchair bound at this point. I loss the use of my legs and my speech was slurred and stuttered and loss for words most of the times.
When the medicines were increased the pseudo seizures went into grand mal seizures. I had to stay in dark places and with no noises or the seizures seemed to be induced. My headaches were still splitting I don't know what brain surgery feels like exactly, but I feel they would seem pretty close to those feelings.
I stopped taking the medicines on December 22 2017 and on December 23 2017 I was walking and talking. I wouldn't say 100% but I was no longer wheel chair bound. (AMEN!! the prayers that were said were working and I could not be more happy or appreciated!!)
HOWEVER!! our journey did not stop, fore it had just gotten started.
During that period I was going to physical therapy, but during therapy and their AMAZING team I would have seizures. I would start out great and then BOOM down for the count and scaring everyone around us!
The internal medicine doctor had ordered me to see a neurosurgeon in the area in January of 2018. He did not really seem too interested in the case, sent us to see another doctor who would essentially do an injection in the spine to see if the pain I was having was more or less phantom pains (from the partial nephrectomy in 2015 remember ) After speaking with this doctor and going through everything the month before I was skeptical of this and any medicine going into my body. because if this was not it then the neurosurgeon wanted to place a mechanism into my spine to for lack of better words "assist" the spinal cord. In my mind I was not having any part of this. I want to go back to work. Fight crime, chase suspects down, workout, etc with this that is not possible.
I was then told about an amazing physical therapist/ chiropractor/ very intelligent with neurology who from beginning after seeing me never once thought that it was something that needed to be seen by a psychiatrist. He advised possibly gluten ataxia or a few other ideas they had from the beginning. I was sent to get blood work to check my vitamin levels and hormone levels. Some of those came back low and was placed on high doses of vitamins. Around the time this was going on I noticed my vision was staying blurred or like tunnel vision and at times always seemed like my eyes were a camera lens trying to focus. Then, eventually I began to go blind in my right eye from time to time.
I went to my eye doctor who then suggested to get
an MRA- sort of like an MRI. Some how a shadow showed up in the scan and they thought I had stenosis in the carotid artery. I was later sent to a neurosurgeon in Houston. Who when seeing me observed that it was not just my eyes or possible artery with issues. My involuntary movements were crazy and when the doctor began to mess with me he observed that my movements were extremely rigid and hard to move or speak once messed with. We were referred to the nearest ER due being four weeks to be able to be seen again by him and he wanted a spinal tap and some other testing completed while we were in town.
However, while there several of the interns and doctors at that hospital ran the same tests over and over agitated my body and getting me all worked up. They later advised that all their tests they did came back clear. They did not do the spinal tap as they advised it was too invasive to complete. Also, that with everything they completed coming back ok that I needed to seek psychiatric evaluations. The following week when we returned back home. My physical therapist was advised about what took place and the testing that was completed and their answer was that I needed to seek out a psychiatrist to help with possible stressors in my life.
HEADS up I have been on sick leave for work and not able to work since December 5th 2017. So the most stress which at that time there was not much to begin with was gone!
Going back home the following day I went back to my physical therapist who then introduced me to vibrant wellness testing. A whole week we waited for the answers, but finally! We received not what I would call the best news, but answers and that's all we were looking for. Something we could work around. It took a few days to swallow the news but WOW! #GODISSOGOOD
I am not as crazy as all these other doctors out there would like me to think! It is all in my head --- LOL --- literally it is in my cerebellum.
I was diagnosed with Spinocerebellar ataxia. Along with a virus in the brain. With the way that I responded to medicine in December doing an antivirus the doctor was skeptical and sending me that route. No one wants to be back in a wheel chair!
I was placed on a really restrictive diet to help reduce inflammation in the body. If you are interested in finding out that diet please go to the contact me page and I will point you into the right direction!
After the last few months of awesome therapy and some getting better in some areas I really sat and thought about all that I had gone through. How much of it was unnecessary! and how it made me want to help someone else because the Lord knows if it happened to me I can not be the only one pushed around with stuff because someone doesn't know what it is.!! I also thought really hard at how I can benefit other by doing this. Mentally, physically, financially.
BECAUSE! lets face it! THIS is far from cheap and not everyone has the funds it takes to get the answers and the medical items needed.
So I am here to help you!! Contact me today and tell me your story I would LOVE to hear it