I had the most extraordinary comment ,on my blog today from one of my Australian readers. She wrote last November mentioning that her 75year-old husband had been diagnosed in 2003 with MND In 2009 he was re-diagnosed with flailing arm syndrome),MND. -which is what I was said to have. However, his biggest problem seemed to be that he was suffering from a great deal pain in his neck, shoulders, arms and hands. (An MRI showed to be suffering from ‘Severe Cervical, Spine Stenosis which is probable cause but of the pain of in his neck and shoulders and down his arms.
She wrote again yesterday to say that in January this year his neurologist said he had made a mistake and changed his diagnosed to Multifocal Motor Neuropathy (MMN) with conduction blocks. (According to the MNN website ,this is often confused with MND (Also this gentleman seemed to have many similar symptoms to myself. He had and still has fasciculatiions in his arms and legs, He has lost the use of his legs at and arms and could no longer feed himself. He has also lost a lot of weight.
His lungs have not been affected, He became doubly incontinent although this side of things has improved somewhat since getting treatment for control of his bladder..
For MMN the recommended course of treatment is fortnightly injections of ‘Intragam’ which is an intaveinus infusion of ‘Gammaglobulin”. Since this treatment started he has already shown promising signs of improvement. He can now walk with a Wheely Walker for short distances and feed himself with difficulty. It is all vey positive,
For these people this is clearly a miracle because MMN is treatable and you can ultimately be cured.. Naturally when I read these comments from my Australian reader I couldn’t help but have a spark of hope that I too have been wrongly diagnosed, but recognise the odds of 1,000,000 to one. At least, I hope they are able to tell me how they eliminated the possibility that I had MNN. However I’m not letting my hopes yet to hire a is clearly slight differences between the symptoms of both in particular the incontinence, which I do not suffer from and the weakness in the lungs from which I do. It is just the fact that he was originally diagnosed with ‘flailing arm syndrome’ as I was, that makes me curious. In order to learn a little more about MMN I went on to its website and it seems to me that most of the symptoms are similar to ALS in factbu it is admitted that they are sometimes confused.
Fortunately I have my quarterly MND assessment on Thursday of this week so will raise the matter then and report back to my readers in case any of them might think it worthwhile being checked .I am certainly not holding my breath but I would be a complete idiot if I were not to follow through on this when there is so much similarity between the two diseases. I know that my team Addenbrookes which came out of the evening team at King’s College London, are not likely to have made what must be a fairly simple mistake but I need to be reassured
I’m very grateful to the carer who made the comment in the first instance, on my blog, which is precisely what it is for, i.e. to share issues such as these with other patients which can improve the quality of life or even be life changing.
I shall avoid any reference to the global financial problems today as this matter is of far more interest to my readers.
Watch this space for further developments.