My last significnt post was several months ago in which I described what this is all about. Basically it's a progressive disease that affects all of the voluntary muscles (the ones we can control at will) throughout the body. For me the ones I'm struggling with are walking, double vision, my hands, neck muscles, swallowing and breathing. Since its progressive, over time these issues may very well get worse. The one that has been scary is the breathing, sometimes especially in the heat you don't have enough strength in your muscles to take a decent breath. Although with treatments and potentially a surgical procedure the possibility always exist for remission.
Since June to treat MG, I have been increasing my dose of an immune system suppressant called Imuran (sometimes used for MC), increasing my dosage of Mestinon which is the main medication used to treat the symptoms of MG and I went in for 5 days of infusions with a blood prouduct called IVIG. IVIG is a combined conglomerate of immune system components from about 1000 blood donors. Costs about $80,000 a treatment
I'm glad I've got good insurance! (My cost was $0) The goal there is to flood your system with 'good' immune system parts so your own immune system can relax and not produce as many of the bad parts of the immune system which are responsible for the autoimmune reaction. Certainly in addition to all of the meds and treatments, I'm strictly staying 100% GF,SF and 99% dairy free, as well as following my MRT food intolerance test results.The IVIG treatment went well, during the week your getting the infusions you do feel a bit like you have the flu, you even run a low grade fever and your joints hurt a little. But about a week after, WOW you feel like a new person. I could even finish a sentence and not be out of breath, it wasn't hard to hold my head up while driving and I could climb a set of stairs !! For about 8 weeks it really helped a lot. I'll have to admit life is very very different with MG.
I did have a rare reaction to that particular batch of the IVIG though, I ended up with hemolytic anemia due to this reaction and basically about half of my red blood cells were killed off, so it was off to the hospital to become the worlds biggest mosquito
. After a couple of blood transfusions, I felt great and the 'storm' from the IVIG had passed. As its a rare reaction and based more on that particular batch, I can try IVIG again, but cautiously using a different brand just to be safe. I'll be going back for another 5 day series in the 3rd week of September, I'm looking forward to the procedure as its getting pretty hard to breath, swallow and walk again. My goal is get enough energy back to be able to attend my daughters wedding in October. If it works the way it did the first time I should be all set.With all of this and the past medical issues I really did find myself struggling with depression and anxiety and finally did seek treatment for that. Now that I know what is like not to be as depressed clinically, I feel I have been dealing with depression for about 2 or 3 years now. I was initially put on Zoloft at a low dose and while it did help with the depression it as a few here have noted flared up my MC and Crohns, to address this I switched over to Wellbutrin (buproprion) I have found it works quite a bit better than an SSRI like Zoloft alone. Overall it address the anxiety and depression very well with no noticeable side effects.
Looking ahead I had a appointment with my neurologist about a week ago and she would like to plan to have a central line port surgically implanted to make the IVIG treatments easier. The port is a little implanted device about an inch (2.5cm) across that is implanted below the skin in the upper chest and a tube from it is placed into the upper part of the heart. Basically it's one heck of an IV
it can stay in for about 7 to 10 years. If you need an IV a special needle is used and its simple to just go through the skin into the port through a silicone membrane, kind of like the top of a vial of in a bottle of injectable medicine that has the rubber like top you poke the needle through. The good part about it is no more poking the smaller veins and as the tube is fed directly into the top of the heart the medication is quickly spread around the body and is well mixed and diluted Actually these are commonly used in people who get chemotherapy as they need frequent IV medications, similar to that with MG about every 6-8 weeks I go to the hospital for 5 days of treatments do the port really saves your arms. The last series my arms were both black and blue for most the forearms, it looked awful and hurts quite a bit. The IVIG is a fairly thick IV liquid and is very tough on your veins causing them to blow fairly often.
The other item that I am discussing with my neurologist and just starting the process on is a surgical procedure called thymectomy. The thymus is a gland that's located right near the heart inside of the chest cavity. This gland is involved with building your immune system when we are younger, but by your mid 20's it's dormant, it's job is done and should have retired. In patients with MG they find its still somewhat active, but pumping out problematic cells that are involved in the disease process. The solution is essentially open heart surgery. Just like in open heart surgery they split the chest open at her breast bone (sternum) and with that they can easily see and remove the thymus which extends form the chest cavity up into the neck.
Now as you can imagine I'm not liking that option too much....but since for about 30-40% of the patients the procedure results in remission in about 3 years and for over 70% of the patients they see significant improvement. For that I think it's worth going through the surgery. Just this week I began the process of getting an appointment with a MG clinic and a cardiothoracic surgeon at Massachusetes General hospital. If this happens at all, it won't be for a while, I wan't to get through the wedding and the holidays first.
My motivation to go through something that dramatic is the probable course of the disease for those that have generalized myasthenia gravis. Here is a quote from a New England Journal of Medicine article that describes for clinicians the likely course of the disease for those with generalized MG
As a counterpoint to that quote patients that maintain consistent treatments and if you 'stay on top' of this disease you can have a better outcome, but this is a serious condition that if something like open heart surgery helps. It's worth going through the surgeryCONCLUSION
In conclusion, the course of MG is extremely variable. Ocular symptoms may recur at intervals or remain static. Spontaneous remission is common but relapse is the rule. After 5 to 10 years, the disease enters a static phase with only moderate response to treatment and varying degree of residual disability. Spontaneous remission could lasts weeks to years and occurs during the first 3 years. At the final stage, patient becomes bed ridden and severely paralysed. Death from bronchopneumonia and respiratory failure are common [37].
Well thanks for listening to my babbling, it's good to be back posting again and it's good to have the depression issue under control. It's very hard dealing with all of the health stuff and then add the depression and anxiety. I really do appreciate each and everyone of you in the PP family. It's such a blessing to know I can come here to share, give support, get support and at times like this just babble on a bit.
Overall I'm doing well just learning what the new normal is
Take care
Thanks !!
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