On Monday of this week, I started writing a new post focusing on the week prior. I’ve been struggling a little bit with some back problems, some problems focusing, and my speech has been worsening. After 1500 words, I read what I had written, found it to be too negative, and decided to scrap it. I don’t need to post negativity and you don’t need to read it. I had a Neurology appointment today, and I figured it would be best to write a new post after the visit.
After arriving, the nurse weighed me, and I actually lost a few lbs, down from 230 to 225. I was worried, as steroids can, and usually do, cause weight gain. I’ve been eating a gluten-free diet, and it is naturally more healthy. Less sweets and more fruit and veggies have helped as well.
Dr. Finseth asked for a summary of the last month, and then we did a few tests involving pointing, following fingers with fingers, hand-slapping, and other things that make me look and feel foolish, but less silly than last visit. Meghan and I barely got our fill of laughter at this visit, so I’ll be asking for a refund when the next invoice arrives. After all the tests were done, Dr. Finseth gave us his diagnosis, his treatment plan, and some encouraging words.
As far as the diagnosis goes, it was pretty consistent with last visit. Cerebellar Ataxia has many variations, a few of which are shown in the graphic below:
As for my case, it appears to be Autoimmune Cerebellar Ataxia, and this is good. It has a possibility of running it’s course, although it may stick around forever, and it is one of the more treatable forms of Ataxia.
Treatment will start with a daily 60 mg. oral dose of Prednisone. I was extremely relieved when told I wouldn’t have to do the high-dose IV steroid infusion again. It was very hard on me, mentally and physically, and I was NOT looking forward to doing it monthly or even more frequently than that. I would have, but I didn’t want to, and fortunately, I don’t have to.
The second part of the new treatment plan is called “Intravenous Immunoglobulin” or IVIG. It is essentially an IV containing the pooled immunoglobulin G (IgG) immunoglobulins from the plasma of approximately a thousand or more blood donors. It is supplying my body with antibodies I don’t produce, or produce enough of, on my own. These antibodies can help fight things I am currently unable to handle, such as the Ataxia that has plagued me since April. When he said IVIG, I was familiar with it, as it is a common treatment for Myasthenia Gravis, which those of you who regularly follow me are aware is one of the conditions originally thought as the condition causing all of these problems. On the MG support pages, some of the members call IVIG “Liquid Gold”
A few quick notes about the thousands of support pages available on Facebook…I am fascinated by the differences in patients and their knowledge of the specific diseases they have been afflicted with. I first joined some support pages for Psoriatic Arthritis some years ago, and there were a few members who I just knew I could ask a question of, and trust the answers I was given. I found the knowledge I was seeking on these pages, researched it to verify, and moved on. The pages were great for picking people up when they were down, but for me, it was about information. After some time, I removed myself from the pages, as it became a negative place for me, causing me to dwell on my weaknesses, rather than pursuing my strengths and possibilities. I am still friends with a couple of those members on Facebook, and I often reach out, or am reached out to, for information and support. Thanks Shayne and Ivy!
When all of this started, I joined a few MG support pages, once again seeking knowledge. I wanted to know what I should be asking my doctors, what I needed to verify a diagnosis, and hundreds of other questions. These were some of the most educated support group members in the world. They knew their stuff. They were highly organized. It was great, and then I was told I didn’t have MG, and I left those groups as well. I think part of their knowledge came from the fact that MG is a rare disease and difficult to diagnose, so much so that LOTS of the members had no diagnosis, sometimes waiting 15 years or longer before receiving treatments, sometimes too late to effectively treat their disease. They shared doctor info, so those unable to receive respectable treatment or diagnosis could travel to find a doctor proven to diagnose MG in all of it’s varieties. They shared medical papers with each other and constantly tried to educate others on their condition. This is where I first heard about IVIG, so thank you to them as well.
Now that I have a diagnosis, I have joined several support groups, but I will be leaving them just as quickly as I joined them. I have found an incredibly different environment on these pages. Members are less educated regarding their conditions, and there is less positivity and more griping. While I can certainly relate and understand the need for this, I cannot and will not put myself in a position to feel sorry for myself again. I hope everyone on those pages finds the support they need there, it’s just not for me.
After summarizing my treatment options, Dr. Finseth extended his hand, shook mine, and said “It looks promising.”
I can’t tell you how long I have waited to hear those words. Or any words like that…and I can’t put into words the feelings that ran through me when I heard, and then processed, that little 3-word sentence. “It looks promising.”
I came home and started writing this post, and have already taken my first dose of oral steroids and scheduled my IVIG sessions. Over 5 days next week, starting Monday, I will once again be at the hospital, receiving a daily infusion. This one made possible by thousands of blood donors, who rarely receive enough thanks for their sacrifice of time, and, well…blood. Thank you.
I know this isn’t going to fix me overnight, or even over the next few months, but somewhere down the line, there is promise.
Thanks to everyone who purchased some “Sick Rick” swag over the last couple of weeks. Orders have been placed and I will keep everyone posted on the status of the products here as things progress.
Too everyone who made generous donations to the Gofundme page set up by my cousin, Vinny Halboth (Thanks Cuz), thank you. The same for the many individuals and families who have sent checks to our home. You’ve provided a much needed sense of relief from the bills and phone calls that continue to roll in. Your support means everything. Thank you. The page can be found here.
I’ll be making a stronger effort to post more often. Keep reading, following, and sharing!