We had our six-monthly visit to the neurologist yesterday.  He doesn’t pretend that he can offer Don any treatment, or any kind of hope really, but he monitors how Don is going, and always stresses that if anything changes or there is any sudden deterioration or anything that is worrying us, to get in touch at once.

As soon as we came into his office, he said with some surprise, “Don, you seem quite improved since your last visit!  I heard you talking to the receptionist and was aware how strong your voice was, compared to your last visit.  And you’re sitting up quite strongly in the wheelchair, whereas I remember last time you had to be supported by the head rest.”

He continued with his tests, which are in another room but seem to consist mainly of Tell me if this is sharp or blunt?  Is this hot or cold?  When I do this, tell me when the tingling stops.  And, Push hard against me with your feet, with your arms.

Then he had a bit of a conversation, clearly trying to assess the mental state, so when they came back into the little room where I was waiting, I helped by holding out the crossword I was doing and said to Don, “Five letters, Soviet labour camp” and without even hesitating Don said “gulag”.  (Yes, I was impressed too!)

The doctor was clearly rather bemused by all this.  He finally said, “Don, you do have primary progressive multiple sclerosis.  That means what it says, that it is a gradually progressive disease and the best we can hope for is to slow down the deterioration or hope, at best, that the condition will plateau for as long as possible.  But I have to say, you are showing clear signs of improvement in almost every area.  I hasten to add, the improvement is not huge, and there is no Lazarus turnaround, and basically your situation hasn’t changed” (I presume, meaning he still needs the nursing home).  “But there is obviously some re-myelination taking place.”

I’ve explained before that the condition of MS occurs due to the eating away of the myelin sheath around the nerves, and in fact the reason the symptoms are so different for various MS sufferers is that you can’t predict which nerves will be affected.  I said to the doctor, “I thought you told us once before that the myelin sheaths can’t regenerate.”

“Yes,” he said. “It was believed that was so.  We know so very little about multiple sclerosis, despite all the research that is going on.”  He gave us a smile and said, “I don’t want to see you for another year, unless something changes.  But whatever you’re doing at present, I suggest you keep doing it.”

Thank you, God.  And thank you LDN.

For some time, Don has been pressing me to arrange a trip to Griffith (in the Riverina) because his 97-year-old mother is in a nursing home there, and we haven’t seen her in over a year.  I’ve tried not to be brutal and say, You simply cannot travel any more!  But I had a sudden inspiration, that in fact if there was something drastic such as a funeral, well there actually is a way.

I told Don that I ought to phone his neurologist and discuss getting permission for a course of methylprednisolone if there is a sudden need for Don to leave the nursing home, eg when his mother dies and he wants to attend the funeral.  It would be an 8-hour drive each way plus at least one night away.

In my opinion, methylpred is like a miracle drug for multiple sclerosis.  When Don, bedridden, was put onto a course of treatment last year, he was standing (with assistance) the next day, and was shuffling along the corridor (with a walking frame and two assistants) a couple of days later.  It was unbelievable.

Only problem with methylpred:  It doesn’t last.  Average duration of the improvement is 9 weeks.  And there are considerable side-effects, eg it depletes the body’s calcium (so he is still on calcium supplements 13 months later), possibility of organ damage if used long-term, and the mood swings during the course of treatment are terrible – swings from anger to despair to weeping with joy, emotions out of control completely.  And growing evidence of an actual deterioration in the condition subsequently.

To my surprise, Don didn’t even consider my bright idea.  He just said matter-of-factly, “No, when the time comes, you will have to go with our son and represent the family. I won’t be able to leave here.”

He has accepted the sad reality with his usual equanimity.  Thanks Don, for making it easy on us.

Some time ago I mentioned the possibility of trying Low Dose Naltrexone (LDN). We didn’t go ahead with that after all – too much else happening and we were advised against trialling a new drug on top of everything else.  But now I am to see the doctor and give it a go after all.

After I mentioned LDN in my previous blog, here are some of the comments I got back:

Helena: My cousin in Poland started LDN about 2 months ago and his health has improved a lot.
He has had MS for 10 years, recently he was confined to a wheelchair but now he is starting to walk again and his speech is improving. Doctors are sceptical about this drug but I say , do what you think is right for you. I had to order the medicine for him from Canada. He believes it is a miracle drug.

Michael: “My stepfather has Relapsing/Remitting, and for five years did everything but LDN, and progressed down hill fast. He’s been on LDN for five years, and has not progressed any farther.”

Joseph:I began taking the LDN expecting nothing from it. I took it the way I took vitamins. You “hope” maybe it might help in some unknown way. I didn’t research the question because of the casual way my doctor had spoken about it.  In July, 3 months later, ALL of my symptoms disappeared. LDN was the only drug I had been taking…  It was only then that I started to do research and found out what can only be found out if you already know the acronym “LDN”.  My book, “Google LDN!” should be published in a few months. In the meantime please visit my site for lots of info and links.  www.gooogleldn.com   “