Living with the MonSter

In the beginning of November, I was diagnosed again with MS, this time with certainty as my lesions now show on the latest MRI. I had been unable to speak correctly since October 10. Most of the time could speak two to three word blips, other times only nonsense would come out no matter how hard I tried. This coupled with additional weakness, balance issues, brain fog, and now anxiety.

I found a new local neurologist who is very nice. The local neuro prescribed a course of steroid therapy, the Hopkins neuro agreed this was necessary. The IV steroid therapy for MS exacerbation would have cost $550 I just do not have. So I originally refused this.

After some research, I found that oral steroid therapy was proven to be just as effective, though harder to stomach. My cost for oral therapy - $0. I requested a script from the local neuro and she obliged very quickly. I was perplexed when I received a bottle of dexamethasone indicating I should take 20 tablets, 4mg each, each day for 5 days. All of the research I had done indicated this dose had been backed off to a very effective 40 mg dose in one week, either all at once, or over a 4 day course. After polling other MS sufferers who have used this therapy, I decided to go with the latter dosing.

Sunday morning, I took 16 mg; Monday, 12 mg; Tuesday, 8 mg; this morning, 4 mg

I have had about six hours of sleep since Sunday night. My balance and mobility have gotten steadily worse over the last four days. Any fast or up and down movement brings on heart palpitations (something I am used to dealing with having suffered PSVT for most of my life). I shake uncontrollably  every time I get up and cannot stand for long without swaying quite a bit. My face is flush, legs are swollen, mind is very confused, eyes hurt and vision is cloudy. Caffeine seems to help the constant waking headache and bland food helps the nausea.

I thought the dex was helping my pain - getting down to a level 3 on day 2; however, by the end of that day, I was back up to a level 8. Now with severe joint and muscle pain, along with the returning burning. I am talking better - still unable to get a word out now and then, still forgetting words and occassionally stumbling - but I can make a sentence and get out what I want to say, even if I have to search a different word.

All in all - I don't think I will do this again. I really believe I need to get back on the natural track to whatever level of health I can achieve.

As best I can tell, it will take until Sunday to get all of the steroids out of my system. Then, I will really see if they did me any good - once I catch up on some sleep.