Joanne Gurion
Forum Replies Created
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My IVIG had been a good experience other than causing migraines, which I never had before. I’ve been feeling like I had the flu for a while now. My neurologist’s NP ordered labs drawn. They came back indicating anemia and abnormal kidney function. The labs were repeated 3 times to make sure there was no mistake made with the tests. I saw my PCP who informed me I’d developed stage 3A kidney disease. Since I’d never experienced this before, I began checking my medication info from the pharmacy. I also looked up Gammagard, which I received in my infusions 4 times per month.
I routinely read the information when I take a new drug, but often skim through the material. This time when reading the possible reactions Gammagard could cause, I saw there was a separate paragraph at the end of the information sheets. It said that Gammagard can cause kidney damage.
So, while I’m not sure Gammagard caused my kidney disease, it’s definitely a possibility. I am not diabetic which leaves one predisposed to kidney disease. I remember being asked if I had kidney disease before starting the infusions, but not being informed it can cause it.
Early kidney disease can have no symptoms. I’ve been taking the medication for a few years now. I’m seeing a nephrologist soon to see what can be done. The disease can’t be reversed, but medication can slow or even stop its progression. Meanwhile, I’m discontinuing my infusions.
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Buckeye, I too have Seronegative MG, Ankylosing Spondylitis in my lumbar region and Spondylolisthesis in the cervical area of my spine. It was diagnosed per MRI after I had severe neck pain, headaches, eye pain and and numbness in my arm, along with pain running down my leg, and thigh. My rheumatologist recommended steroid injections in both places which have helped somewhat.
MG is being treated with IVIG, 120mg of Mestinon daily and occasional prednisone.
IVIG helped more at first but symptoms are increasing again, including increased shortness of breath. I’m meeting with my neuro’s nurse practitioner to discuss it. At 72yo I’m not eligible to have my thymus removed.
Many of the symptoms I have are related to all of the conditions I’ve been diagnosed with. It can be very confusing. Since the symptoms are progressing, I need to figure out what’s causing them and with my docs, figure out a treatment that’s more effective. My sed rate has been very high at 120 for several months now. My neuro has said it could be caused by IVIG. I’m now in the process of ruling out what else could be causing the rapid increase in inflammation. Hate to eliminate IVIG until something else can replace it.
So that’s where I am now. Thanks for sharing your insights on what’s happening with you. Please continue to share. It’s helpful in so many ways.
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I have GMG. My neuro and cardiologist recommended a sleep study which I will do. Can anyone explain the difference between a BIPAP and a CPAP machine?
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Anxiety
Acceptance
Adaptation
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I don’t know which infusion book you’re referring to. Could you please be more specific? I’d like more information too.
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<p style=”text-align: left;”>Besides MG, I have spondylitis, and asthma, as well as neuropathy in my feet. I was diagnosed with Myasthenia last August, two years after being hospitalized for a virus and multiple pulmonary embolisms, followed by shingles. The symptoms of MG began shortly after that. I was so weak, I was unable to walk to the car.
I found a neurologist who specializes in MG, and after beginning Mestinon, my eyesight improved. I changed my diet to fresh, healthy food. I began Physical Therapy, invested in a good pair of shoes and slowly began walking outdoors with my husband. During winter I tried the treadmill, but only for for short durations due to balance and respiratory problems. My excellent physical therapist had me try a Nu Step machine. It’s often used by MS patients for rehab. It made such a big difference that eventually I purchased a used machine for home. This machine provides a cardiovascular workout in a comfortable seated position. It has an adjustable seat, elliptical arms and footrests. The screen monitors heart rate, steps, calories used and time spent working. I get a good work out now, for the first time in years. My strength and confidence have increased, and I’m excited to try to resume gardening again.</p>
The Therapist I work with has worked with MG patients before. PT reduces depression, and provides gentle home exercises, allowing me to feel like I am a partner in my care. These machines and similar ones, can be found in most rehab and park district facilities and health clubs. Medicare covers PT. All you need is a prescription. Some PT companies offer a free ride if needed. I began a skeptic and now look forward to my visits. -
My name is Joanne. I have generalized MG, diagnosed in August of 2021. I’m a newbie to MG, but have another autoimmune disorder called pernicious anemia. My mom had it. Her mother too. My body cannot absorb Vitamin B 12 in foods. I was diagnosed after having a very low RBC count. It’s not unusual to have more than one autoimmune disorder, so it wouldn’t hurt to ask about the possibility of pernicious anemia. It’s easily solved these days by a weekly B12 injection. Best of luck to you
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I was diagnosed last August, 2021. I can’t believe how timely this topic is for me. Saw my neurologist yesterday. Have been recently experiencing headaches with pain behind my left eye. My vision is blurry. I get dizzy. My eyes are more light sensitive than usual. Had MRI and MRA, both normal. My neurologist feels they’re migraines and wants me to take RX to treat migraines. I have no hx of migraines or headaches prior to MG. After listening to the video, which was excellent, I question starting migraine RX. I take Mestinon now and due to an increase in bulbar symptoms will be beginning IVG infusion treatment soon. I’m wondering if I should wait to see if that helps the headaches. I also requested physical therapy and am doing neck/shoulder exercises at PT and at home. It helps with neck and shoulder pain and allows me to feel I’m being more proactive in finding help. Any suggestions?