WOW, gonna be needing some vibes...

As I have mentioned a couple of times, I suffer from the neuromuscular disease myasthenia gravis. I'm a "Jerry's Kid." I, unfortunately, have a particularly severe form of it that has never responded to treatment as it should have. I use over $6K worth of meds a month and still have severe disabling symptoms. It's cost me my career, almost all of my friends, and this summer it almost cost me my will to live.

I've always been very much into research and have known about a radical treatment used mainly for people with multiple sclerosis, but also for others with other autoimmune diseases. Last week, at one of my lowest moments, I decided it's time to pursue the treatment.

I have been emailing doctors at Johns Hopkins where the treatment was designed and then found a doctor at UTSW in Dallas who knows my neurologist who is willing to work with me. He actually did the treatments at Johns Hopkins before moving to UTSW. The last hurdle was presenting my plea to my neurologist, and she just emailed me and agreed to help me.

The treatment is intense. It involves a 4 day hospital stay where I will be given high dose chemotherapy to wipe out all of my peripheral immune system, but leave the bone marrow/stem cells. That will hopefully erase my immune system's "memory" of the disease. I will then be given drugs to grow me a new immune system that will hopefully do better. It's not a cure, but hopefully it will buy me some time so I can be a better mom to my daughter who is entering her teens, and perhaps I can get rid of some of my drugs and the ones I keep might actually work. The slang term for the procedure is called "rebooting" my immune system.

I'm not sure when it will happen, but I'm getting things in order and told my neuro that I will be ready within a month's time. Of course insurance needs to approve it, etc. I'm hoping sometime in Oct/Nov it will actually happen. I'm not looking forward to being bald in the winter, but am looking forward to seeing if I can get some relief. It's been a scary few years for me.

I'll keep you posted and would appreciate some vibes. I'm not telling my "skin friends and family" until it's been scheduled, but needed to share nonetheless.

Thanks for listening,

Cally

Cally I am so sad to hear what you are and have been going through. This must have been a difficult decision to make to go ahead with this procedure. You are a very courageous woman. I wish you the best of luck and hope all this works out for you. Hopefully this procedure will make your life so much better for and and your family. Sending lots of good vibes your way:

I am sorry you are going through this Cally.
My aunt suffers from the same thing, but she has been doing really well for the last 16 years, since she removed her Thymus Gland.
She was not even able to walk anymore - in fact, she was barelly able to hold her body up while seating down, unless she was in massive medications. Her eye was dilocated up and to the side also, and she was in pretty bad shape.

In Brazil, one of the treatments of choice, is removing the Thymus Gland, and then following with treatment when necessary during flare ups.

She does have flares occasionally, but God, I was just with her in Florida and she is doing AMAZING! Her last flare was last year and she was for a while on steroids, but now she is not on any medication, leading a completely normal life....

I am curious... Do they do Thymus removal for Myasthenia Gravis here? It was a miracle for her, and for several other people in her support group as well...

If you want, I can get her doctors information, and you can communicate with them...

Just a thought....

I'm not familiar with your condition but it sounds absolutely horrible!!! I'm sending you lots of and hugs and wishing you the best of luck with your treatment.

I can't even begin to imagine all that you must be going through hun, but I AM thinking of you and sending lots of vibes.

Carolina,

You are so sweet. I'm sorry your aunt is going through this, too.

I did have my thymus gland removed, in 2000. However, a few years later, a new type of MG was discovered that does not respond to that treatment and guess what---that's what I have. One surgery wasted....I want my thymus back!!!!

This type of MG presents mainly from the neck up. Sounds not too bad since I can walk---WRONGO. I have trouble swallowing my food and water, and choke frequently. A big risk is respiratory failure due to choking or the muscles that control breathing just "wearing out." Sometimes liquids will just stream out of my NOSE instead of going down my throat. I also have a lot of trouble speaking---slur my words and run out of air--my voice sounds very "nasal." I'm good for maybe 5 words at my worst times. Try parenting a teen when you can't speak...sigh. Or have a friendship....or work a job. Sigh

The worst, by far, however, is the vision problems. I have constantly blurry vision and then for 2-3 weeks out of a month it's double. And my double vision is extreme. It's like one image is on one side and one is above and tilted on its side. It's very disorienting and I sometimes lose my balance and driving more than just very short distances is not possible as I have to cover one eye with a patch but then the other is still blurry. When my vision is bad, my eyes can be severely crossed looking, or face opposite sides of my face, or one is rolling up and one rolling down. It's very humiliating to walk around like that as I get the appearance of "lacking intelligence" or of being a druggie or drunkard. My friends have all fled as they can't handle it. The internet is my lifeline, but I work with one eye covered so I can read the screen.

I also have neck weakness. I can't lift my head when lying down. My face is droopy and I sometimes have trouble closing my mouth and eyes at night. My arms and legs are affected as well, but to a lesser, but still very annoying degree. Overall, it's a very low quality of life.

I use steroids, immune drugs (transplant drugs) and I infuse immunoglobins every 3 weeks. Nothing works. I've tried alternative treatments, acupuncture, diets, etc etc. No relief. My big fear now is that with the new healthcare changes, I will be considered "not worthy" of the expensive treatments anymore and will be left to fend for myself. As it is, we have to appeal to my insurance every year for the drugs that don't work that well! So, if I'm going to do this--now is the time.

Thanks for the well wishes all.

Oh Honey, I am so sorry... I will pray that this works!

Good health I hope this works for you

I agree with LaRussa; you are a very courageous person, and I wish you the very best in your struggle.

Originally Posted by CatMom2Wires

The worst, by far, however, is the vision problems. I have constantly blurry vision and then for 2-3 weeks out of a month it's double. And my double vision is extreme. It's like one image is on one side and one is above and tilted on its side. It's very disorienting and I sometimes lose my balance and driving more than just very short distances is not possible as I have to cover one eye with a patch but then the other is still blurry. When my vision is bad, my eyes can be severely crossed looking..... The internet is my lifeline, but I work with one eye covered so I can read the screen.

Click to expand...

I also have neurological issues, although not nearly as severe as yours, but for the double vision that I experience, my eye doctor was able to eleviate that with prism lenses! I never would have believed it, but that's all it took. I had exactly what you describe above, and now on most days the prism lenses take care of it, and on those days when I don't have double vision, I can still see ok with my glasses. No one can tell the lenses are even different! Now I can actually drive once in awhile, but due to other issues, not often.

I sure hope your insurance approves this and that it works for you. What's a little "baldness in winter" if it helps in the long run? I'll be very interested in the outcome, as my cousin suffers from MS and so far, nothing has helped her, AND she lives in TX!

Sending major prayers and vibes Just knowing about your speech difficulties tears at my heart - my brain-damaged daughter's most obvious problem is a terrible speech defect, and it makes her virtually isolated. Not to mention your difficulties in swallowing
Please keep us posted. I am also keeping your daughter in my prayers, as this must be so difficult for her to witness. I am glad that she has the kitties for comfort

I think you are a very brave person, lets hope that your insurance ok's the treatment.

Unfortunately, prisms don't work for me because it varies from day to day and it's also so severe, I've been told by the optho that there isn't a prism strong enough to correct my issue.

Thanks so much everyone. I'm a bundle of nervous energy right now...wondering WHEN WHEN WHEN!

Cally

You are extremely brave and I am sending you lots of and xx

Sending mega That you get accepted and that it works.

I've heard of using chemo for MS and having good results.

I am familiar with your disease (I read a book about a woman who had it) best of luck and many that all goes well.

From me also sending best wishes and prayers for immediate relief !!! Chemo may be massively stressful on the body, but I've heard way less so than all the horror the illness causes. Is there a stem cell transplanation that goes along with the treatment ?


For blessings of strength and good health...

No, they don't do the stem cell transplant. The chemo destroys the mature immune system but the embryonic cells remain in the marrow. The theory is that when stimulated, the baby cells will not remember having the disease. It's not quite as "thorough" as a stem cell thing, but much less risky. With this, I can be up and about within a few months. With stem cell stuff, you are pretty much isolated for a year or more with tons of restrictions.

Thanks for asking!

Cally

WOW! That's some kind of major treatment for you and for your family to go through. We'll definitely keep you in our prayers and pray for a successful procedure and as little sickness as possible for you.