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Dr. Rick, MD
Dr. Rick, MD, Board Certified MD
Category: Neurology
Satisfied Customers: 11237
Experience:  20+ years as a doctor. Internal Medicine Internship in NYC
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I have hypogammaimmunoglobulinemia. As a result, I have

Customer Question

I have hypogammaimmunoglobulinemia. As a result, I have multiple autoimmune diseases, including lupus, sjogren's, addison's disease, hashimoto's thyroiditis, pernicious anemia, various neuropathies in my hands, feet, and back, and the one I am asking about,
myasthenia gravis. I also have heard failure renal tubular acidosis, and stage 3 kidney failure. I've bade a recent exacerbation of the myasthenia, with 5 weeks in the hospital, including some days in ICU when I got a sinus infection. I've been home 2 weeks.
I am on 5 liters of oxygen, and use a bi-pap at night. 9 years ago :-* was successfully treated with Rituximab. I was in remission for years until this summer, when I had a hospitalization for heart failure, then kidney failure from the diuretics, the a kidney
infection then the myasthenia came roaring back. 3 weeks in the hospital, the home 5 days, then back to the hospital the day after showing symptoms of the sinus infection. I was on 12 liters of O2 at that point, and could barely move. I was treated with high
doses of solu-medrol, and am now on 20mg of prednisone twice a day. I went home on 3 liters of oxygen, and am now up to 5, and am in bed most of the day with full body weakness. My understand my disease very well. My neurologist said this is a pseudo-exacerbation,
because he thinks it was just brought on by the sinus infection. I know that I started having minor eye problems characteristic of myasthenia gravis starting in the spring, and then weakness over the summer. The August episode put me on oxygen, and wasn't
brought on by an infection. My neurologist was out of town, so I was treated by his partner then. The latest *was* associated with an infection,'but given the increasingly serious symptoms over the last 6 months, why would he call it a pseudo-exacerbation?
I feel like I am on a runaway train. Just a simple cold could put me back in ICU. Why isn't he treating with Rituxamab again? I know the risks and accept them. Why doesn't he appear to think it might stop this progression? I get IVIG every 2 weeks now, and
could have it more often to offset the loss of B cells. I'm already immune supressed. What is going on? Why does it seem that he isn't taking this seriously? Is he giving up? I'm not! My rheumatologist wants me to go somewhere where there is research going
on that might help. He suggested the Mayo clinic in Arizona. I am in the Mojave Desert 70 miles from downtown L.A. Is there anyplace to go here? I want to watch my grandchildren grow up.
Submitted: 1 year ago.
Category: Neurology
Expert:  Dr. Rick, MD replied 1 year ago.

Hi. My name is***** and I am online and available to help you today. Thank you for your patience.

Question and answer is just one of the services I offer. I can also provide you with additional services, such as live telephone or skype consultation, at a small additional cost. Let me know if you are interested.

Yes, you could go to UCLA Medical Center. As a teaching hospital they are very, very good.

But, I do agree with your Doctor: The Mayo System is one of the best and, if you can get to Arizona or Rochester Minnesota, you would be getting state of the art care.

Does this make sense to you?

Don't forget to mash the positive (excellent is the most fun to push) feedback button.....without this important step on your part the funds you left on deposit are not released and my kids will spend another cold winter barefoot ;)

It's safe for you to press the positive feedback button now if you so desire. And, never fear, even after you press that button I don't go up in a puff of smoke -- I'll still be right here to continue helping you, but, as I do work for tips, I want to make sure you are happy before rating me.

Dr. Rick MD FACS

Customer: replied 1 year ago.
your answer about where I might go makes sense. However, I don't know if this option is affordable. However, you didn't answer the first part of my question. Why doesn't my neurologist want to treat this with what was successful previously? What is making him think this is a "pseudo-exacerbation", and is he using that term pejoratively? Why is he watching me go downhill and not doing anything about it? BTW, he is well regarded, practices in Arcadia and Pomona, CA, at Case Colina Rehabilitation Hospital, and is engaged in research into movement disorders at the City of Hope, Duarte, CA. As an internist/opthalmologist, are you qualified to answer a neurology question such as this?
Expert:  Dr. Rick, MD replied 1 year ago.

I wish I could read your neurologists mind but, in order to just have an idea of what he might be thinking, I would have to review your entire medical record, interview you in depth and do a complete exam......hard to do with a keyboard as my only diagnostic tool :(

By pseudo-exacerbation, I think he is trying to say that much of this current episode is anxiety/stress/all in your mind......

It seems that, at this time, you are not happy with this doctors care. So. The best thing to do? Find a new doctor. He is not the only, nor the best, ***** ***** there.....

Dose this make sense to you?

Don't forget to mash the positive feedback button for me...the one labeled "excellent" is the most fun to push by far ;)

It's safe for you to press the positive feedback button now if you so desire. And, never fear, even after you press that button I don't go up in a puff of smoke -- I'll still be right here to continue helping you, but, as I do work for tips, I want to make sure you are happy before rating me.

Dr. Rick MD FACS