Yesterday I had my regular neurologist visit to follow up about my migraines and while there I was also diagnosed with Essential Tremor, a genetic condition that is often confused with Parkinson’s from the symptoms. It most commonly affects the hands, head, and voice, but can affect any body part. It can also affect balance, mood, and possibly memory.
My balance, hands and voice are already affected pretty bad at times which scares me since it can be a degenerative condition and it can eventually become hard to speak, eat, write, or in my case, make art, since I am an artist.
My tremors started out in both hands a few years ago and have definitely worsened. At first, I only noticed that I could never take a good picture because I couldn’t keep the camera steady enough to take one. It has worsened since then and affects more daily activities, such as writing, typing, pouring/drinking liquids, dropping almost everything, etc. I noticed the voice tremors starting probably a year or two after the hands.
My balance has noticeably worsened to the point that I often start to fall over while just walking around the house or even standing still. It isn’t unusual for my husband to push me back up as I start to fall over like the Leaning Tower of Pisa.
For a long time I tried to dismiss it because I didn’t want to think something might really be wrong. I tried to blame it on anxiety or weird medicine side effects. I am glad that I don’t have MS or Parkinson’s which I feared sometimes. What finally made me bring it up with the neurologist is that the geneticist I saw for my Ehlers Danlos testing a few months ago seemed concerned by how much my hands shook.
The last thing I want to do is take yet more prescription medicines, but I am considering it in hopes that it might slow down the progression and alleviate the symptoms a bit. The only bad thing is that all the meds they use to treat this condition can worsen my depression, so the neurologist wants me to get the ok from my psychiatrist before we decide on a med to try.
Today my husband and I went to go see one of his students dance in a special recital:
Seeing all the cute little kids dressed up in their costumes and dancing made me really miss having kids around. I used to be almost constantly surrounded by kids between foster parenting, volunteering with the kids at our old church, and working in the school system as a teacher’s assistant/aide. My favorite age of kids to work with were always the younger ones, 3-4 years old to around 6 or 7, although I bonded well with kids of almost any age.
At this point, I don’t know if my physical/mental health will ever consistently improve to the point that I can do those things again, but I miss them. I am thankful for the experiences and memories though.
Yesterday I saw my new neurologist for the first time to try to figure out why I am suddenly having so many migraines. I must say the visit didn’t start out well. For one thing, they only see new patients first thing in the morning, and I am NOT a morning person. However, I did make it there on time at 9am in the morning, but then I ended up waiting to see the doctor until after 11am!!! Needless to say, I was not a happy camper.
The doctor seemed rather grumpy when he finally came in too. Maybe he was having a bad morning (I would think so with being that behind schedule for a specialist), but after waiting two hours, dealing with a grumpy doctor was not ideal. I will say that even though he was a bit grumpy, he was thorough at least. He asked tons of questions and investigated all the leads I could provide, even bothering to request additional medical records and taking a second look at my imaging tests that have already been done.
By the end of the visit, he had decided to send me for an EEG to check for possible mini strokes or seizures, and another head/neck MRI to see if my cervical issues have worsened in the past two years or if anything else has changed. He also wants me to be tested for Meniere’s disease, an inner ear disorder that may be contributing to my vertigo, ear pain/pressure, and tinnitus.
He noted that my neck was constantly spasming, so he switched me to another muscle relaxer and also put me on Topamax to try to help prevent the migraines (we are hoping it might help my fibro pain some too). I guess we’ll see how it goes from there.
Sometimes I worry about fluoride…specifically ingesting too much of it. Too much fluoride can cause a condition called skeletal fluorosis, which is often mistaken for arthritis or fibromyalgia. Most people know our toothpastes and other dental products often contain fluoride, but many don’t realize all the other sources of fluoride we ingest every day.
There is fluoridated water of course, which has been a point of contention for years. Should the government put fluoride in the drinking water? Is it necessary? Especially when most Americans use toothpaste with fluoride anyhow? Did you know that both green and black tea (two of my favorite drinks) are a high source of fluoride? It often has way more fluoride in it than the water, often over the “safe limits” established by the government (which are still debatable).
Because our water is fluoridated, almost everything made with water stands a chance of being fluoridated too – all our drinks, alcohol, soups, fruits, grains, vegetables…even our meat! (Often our food becomes contaminated with fluoride more due to pesticides rather than our water, and our meat gets contaminated because animals eat food with these pesticides in them.)
Some people claim antidepressants like Prozac can contribute to fluoride poisoning, although this is definitely debatable. I’ve heard scientists argue that because of the way the chemicals bind together in the drug that the fluoride should all get washed out, but who knows for sure?
Maybe I am just an anxious, sometimes paranoid person (all true), but maybe this really is a problem that is often ignored or overlooked. After all, fluoride is still a poison.
I spent yesterday in the ER. Always lots of fun. I was rather freaked out because I literally couldn’t swallow at times and felt like I was going to choke to death or something. I also was having chest pains, trouble breathing, and feeling like I was going to pass out. Now I get to go back to the GI doctor because they think there are probably issues with damage to my esophagus.
Still not feeling much better today. They put me on some meds that are supposed to protect and hopefully help repair damage done to the esophagus, but no relief yet. I still struggle to swallow, keep coughing, and feel like there is something permanently stuck in my throat. Eating and drinking is no fun, even the smoothie I tried to drink earlier struggled to go down. My chest, especially around my breastbone feels like there is an elephant sitting on it. Man, this sucks.
I want to begin this post by sharing a horrible dream I had last night. I was sitting in row G of a live outdoor show (my dreams are pretty specific sometimes), when someone behind me threw up all over my head. It was disgusting! I still remember the smell and feel of the vomit as it trickled down my face and hair. Ick! By the way, how do you “smell” things in a dream? I don’t know, but I sure did!
Ok, now that I got that off my chest, on to the main topic of this post. I am frustrated with doctors. Why? Because time and time again, I have had to fight to get testing that I feel is important, because many doctors tend to think I am just being a hypochondriac or overly anxious when I tell them I suspect a particular diagnosis.
However, time and time again, I have been proven RIGHT when I finally got the testing. C Diff, MRSA, medication allergies, asthma, CFS, fibromyalgia, costochondritis, pancreatitis, Aspergers, bipolar…all of these are conditions I highly suspected long before I actually got diagnosed, and yet, I had to fight to even get them checked out because doctors thought I was just being paranoid.
The most recent testing I am fighting for is Ehlers Danlos (EDS). I meet the major and most of the minor criteria for the condition, but have been fighting to even get a referral for testing. EDS is often comorbid with high-functioning autism, so that is what first made me interested in the condition. I am positive I score at least 6 or 7 out of 9 on the Beighton Score (higher on the Brighton Score).
I guess I can sum up this post in one sentence: Why is it so damn hard to get a simple test done???
Hello everyone! I don’t want to bore you all with the continuing mini-drama of my wisdom tooth surgery aftermath, but I know many of you genuinely want to know how I’m doing, so I decided to do another update, this time I’ll just bullet-list what has been going on the past few days:
- Wednesday I went to the dentist in the morning, where he did indeed diagnose me with dry socket. He cleaned out the area and then put a clove oil soaked material in there. It didn’t hurt much when he did that, but the incredibly strong taste of the cloves made me horribly nauseated the rest of the day and made everything taste disgusting. It was so strong, my husband could smell the cloves across the room when I had my mouth shut!
- The clove stuff did eliminate most of the pain for a couple days, but this morning (Friday), that awful deep, throbbing ache has returned off and on. I do have more clove oil I bought, but the scent alone of it makes me so sick, I honestly don’t want to use it. Right now I am trying to get by taking the maximum amount of Ibuprofen and Tylenol, while occasionally using Ambesol to numb the area.
- I do still have opioids left, and it is extremely tempting to use them, but I took them so much the first few days after the surgery that my bowels have become clogged pipes 😦 I hope that isn’t TMI, but it is a common side effect of opioids, and when you already have IBS like I do, I think you are even more prone to stuff like that. I have been taking stool softeners like crazy, eating mushy prunes, and even broke out a little Exlax, but nothing yet.
- By the way, I forgot to mention that after I got home from the dentist on Wednesday, the blood clot on my other lower socket became dislodged and lost, so now I technically have TWO dry sockets. That was SO frustrating! If it was going to come out that day, why couldn’t it do so BEFORE I visited the dentist? Luckily, that side does seem to be a bit further along in healing, so it isn’t as painful overall as the other side, but it is still annoying.
- I have also been running a fever off and on, which seems a bit concerning considering the amount of Ibuprofen and Tylenol I am taking. You would think that would knock out any fever. I can tell right away when I am running a fever because I will get these intense sweats, and become even more nauseated and dizzy than I am already. Most of the last few days I have had to spend flat on my back most of the time due to that dizziness and nausea.
Well, that pretty much covers the last few days. I hope this is over soon. I appreciate all the concern and comments you guys have been leaving. It means a lot to me when I am feeling so poorly, even if I don’t feel well enough to write long comments back.
This is going to be a bit of a rant. Yesterday I received a letter from the orthopedic doctor and pain management clinic I was seeing for my upper back/neck pain. That letter turned my mood sour quickly. It said that I had been non-compliant with physical therapy and the spinal injections they had ordered, so they were kicking me out of the practice.
Why did it tick me off? Because the way they expressed it is totally not what we had discussed in person. First of all, I was not “non-compliant” with physical therapy. I tried it for several weeks and it WORSENED the pain rather than helping. It also caused widespread fibromyalgia and chronic fatigue syndrome flares throughout my body. This wasn’t the first time I had tried physical therapy, so I had been worried from the start, but they had promised they would accommodate my conditions, which they didn’t actually seem to do.
When I called the physical therapy office to explain that it was worsening my back pain and my fibromyalgia/cfs symptoms, they seemed understanding at the time. I was also having issues driving myself to therapy because when my back pain flares up, I can barely turn my head because of the neck pain. I asked the physical therapy office if I should perhaps try again in the summer when my husband could drive me, but the lady said that if the sessions were causing me that many problems, trying it again in the summer didn’t make much sense.
As for the spinal shots, the main reason I was fearful about going through with them is because they would not offer any kind of sedation. You see, I had been told how important it is for spinal injections that you be absolutely still during the process or you could cause damage to the spine. As an autistic person with severe sensory issues and intense over-sensitivity to any kind of sensory input (including pain), this worried me. I also have severe anxiety and that can sometimes make me shake and tremble involuntarily.
I had researched the shots and noticed that many other places offer sedation. I even talked to a few other people who had undergone the shots and had been sedated. I was not trying to be a pain or a drama queen, I was simply being cautious. Affording the shots was also a major issue at the time (since they required full payment up front), which I had explained to them.
In the end, I’m not upset that they were unable to further help me, I had already kind of figured that out. However, I am upset at the accusatory tone of the letter they sent me and the obvious insensitivity and lack of understanding for people who suffer from chronic pain/chronic illness and people who happen to have autism or other sensory processing difficulties. By the way, I will be sending them a letter back stating much of what I just said here. Hopefully they will learn something.
Not long ago I had an infected wisdom tooth, so unfortunately, the surgery I have been putting off to get my wisdom teeth out is now more of a necessity. I am scared shitless, and I’m not even sure why.
I keep telling myself it is a minor surgery. Outpatient even. I’ll go, get them out, come home, and likely crash for a few days. Then hopefully it will all be behind me. The teeth are impacted, which makes the surgery more complex, but I will be put out for the operation, so I’m not sure why I am so panic-stricken at the idea of having to do this.
To make matters worse, the first appointment I could make to get it done isn’t until the end of August, so I have an entire month to keep freaking myself out. I keep trying to distract myself or think positive thoughts, but I feel such a sense of dread that I just can’t shake, and it is making me spiral into a depression as well.
I did the typical Aspie thing, and tried to make myself feel better by finding as much information as I could about the procedure to lessen the anxiety, but it hasn’t helped much. I could quote you stats of all the risk factors (and ways to prevent them), draw you a diagram of the procedure, or explain step by step what will be done, but it isn’t helping me to let it go.
Maybe this is my OCD coming out in full force (an inability to NOT fixate on something I wish I wasn’t thinking about at all), or maybe it is just the anxiety of the unknown, since I have never had surgery of any kind before or been put out for any kind of operation…but I wish my brain would just shut the hell up about it! I’m sure my poor husband would find that a relief too since he has to deal with his basket case wife for the next month 😦