It’s hard for me to believe that it’s been three years since I last came to the Mayo Clinic for a consultation. I was here twice in 2011 and ended up with a treatment plan that included taking Cytoxan, starting IV upon my return home, and then switching to oral tablets in early 2012. After getting adjusted to the medication, things went relatively well, my condition staying stable until sometime in the middle of 2013. At that point symptoms starting worsening – more weakness and less coordination but especially more autonomic dysfunction. The biggest issue was bradycardia – a very slow heart rate – that eventually required a pacemaker implant in November 2013. Most recently it’s been my blood pressure – at first jumping up and down and more recently seemingly on a downward trend. That seems to have stabilized with medication and diet changes but I still have those times when my blood pressure drops when I change positions like sitting up from bed or standing. I have to take it slow or run the risk of passing out. Also, I am now losing some weight without really trying – down about 10 or 15 pounds from March 2014. So, coming back to Mayo, I am a total of 70 pounds lighter and 1 inch shorter (did I shrink?) than I was in July 2011. Of course at that time, I was bloated from all the steroids and the high dose of Lyrica that I was taking.
Anyway, I got an appointment to see the doctor I saw in 2011 in the Autoimmune Neurology section. Coincidently, he is from Dublin, Ireland so we have something to talk about in common – my daughter, son-in-law (an Irishman) and grandson live in Belfast, Northern Ireland and we have visited Ireland on several occasions. He seems to be well versed in the treatment of paraneoplastic disorders and current research and advancements in the field of treating this rare disease.
He confirmed the diagnosis of my home neurologist and his opinion from three years ago that I have a multi-focal neurological disorder with myoclonus in all extremities, myelitis, peripheral neuropathies and myopathies along with autonomic dysfunction. He recommended that I immediately stop taking the Cytoxan as the risk of secondary cancers is markedly increased the longer you take this drug. He also thought that I should be tapered off the prednisone as the bad side effects seem to outweigh the benefits of this drug in the current situation. His treatment recommendation is an aggressive plan of high dose IVIG starting with doses three days in a row, then weekly, and then bi-weekly over a 12 week period. Then, my home neurologist would evaluate the effectiveness of the treatment. If improvement is noted, then the treatments would continue every 3 weeks at first then moving to monthly doses indefinitely. The outcome is to have some improvement and to stabilize the condition in its present state. He said not to expect improvement back to the way I might have been one year, two years or three years ago but to have some improvement from where I am now and to stop further progression of the disease. That would be great if we could achieve that outcome. I think I can find ways to adjust to the “new normal” if the “new normal” is not constantly changing.
So, hopefully with this recommendation my home neurologist will feel more comfortable prescribing the IVIG. He had mentioned that option to me but was hesitant because of the cost and problems with insurance coverage. I have original Medicare with a Plan F supplement, so hopefully this treatment plan can be covered by my insurance.
I know it’s tough on my family living with me and this disease. Hopefully, we are finding ways to keep me as independent as possible and as small a burden as possible. Now, the doctor, while confirming most symptoms are likely related to the paraneoplastic disorder, did think that some of my weakness could be “functional” – real but not related to the disease process that is going on. He recommended that I try more rehabilitation. This is the one part of his opinion that I have doubts about. I have tried faithfully to follow an exercise program. Too much therapy has simply led to more pain and fatigue in the past. Following a good diet and a regular light exercise program allowed me to lose about 50 pounds in a planned out way. I have to be careful to keep the exercise within reasonable limits. I will try to follow this advice but I also plan to continue to follow the advice of my home rheumatologist who has recommended that I combine rest with appropriate exercises to stay fit while dealing with my condition.
I will continue to update on how things go and when treatment will start. I also plan to write some posts about Rochester and its attractions and restaurants. It’s not a bad place to visit as well as being a great place for medical consultation.