Health Update

It’s been a while since I’ve posted an update on my health and wanted to get you up to date. A lot is happening in my life right now and hopefully, I’ll have more answers at the end of the month when I see a new Rheumatologist.

My Hypogammaglobulinemia

I had a follow-up meeting with my Immunologist last month and discovered that insurance will not pay for Antibody Infusion Treatments until you’ve been on antibiotics four times in a year. You have to be sick first. I understand insurance companies have to make money and are not a charity. I did have an ear infection so he put me on an antibiotic. There’s no reason to see him again until I get sick. There’s one doctor down.

My Tardive Dyskinesia

I’m in the approval process for my prescription Ingrezza for my Tardive Dyskinesia. It’s $7,500 a month so the approval process takes a little longer. I’m blessed with good insurance who is covering 100% of the cost.

Tardive Dyskinesia is a serious side effect of taking anti-psychotic medication. I’ve taken them for close to 30 years so I’ve been very lucky to not get TD before now. Not only is TD hard to deal with it also means that I can no longer antipsychotic medications which have been essential for my Bipolar Disorder.

My TD is in the mouth, so my tongue is constantly pushing on my teeth, rolling across my teeth and gums. It’s very painful, my gums are raw, my jaw hurts, and my head hurts.

The most common side effects of Ingrezza are sleepiness and a fall hazard. The more serious side effects  I’ll worry about if they show up. I hope to start the medication next week.

Fibromyalgia and/or other

As I mentioned, I’m seeing a new Rheumatologist at the end of the month. It culminated from having swollen salivary glands. This can point to an autoimmune disorder, possibly Lupus. Although I don’t have the classic butterfly rash, I do have many of the symptoms. I’m not going in with a diagnosis because I have many other issues going on with my legs that are progressively getting worse. My hips and shoulders have become so painful that I can only sleep for 2-3 hours before I wake up and have to turn over. Then I’m awake and have to start the process all over.

The muscles in my legs are either having spasms or tied in knots making it hard to sleep or walk. I wake up and can hardly walk because they are so tight. This appointment was made three months ago, so I’ve been keeping a log of all the symptoms by area of the body. This will help when I see the doctor.

I’m now four times vaccinated and still taking all the same precautions. Since Covid started I’ve only talked with one person without a mask and they were several feet away. I hope you’ve taken your vaccinations and staying safe.

I hope you are healthy and happy.

Melinda