Some of you may know that I have been in limbo for some time. With neuros for 5 years and before that badgering GPs for 2 . Progressive MS or neurodegeneration from previous radiation treatment are the diagnosis’s that have been mentioned but they just cant be certain.
Last week an article was published on the barts MS site under the thread “Understanding Progessive MS” in which the Prof said the following:
Inflammation can damage nerves and leave them functioning, but the resulting damage primes them to die off in the future; so called delayed neurodegeneration. The mechanisms that result in delayed neurodegeneration of nerves are many and include innate immunity (hot microglia), energy deficits (mitochondrial dysfunction), excitotoxicity (calcium overload), free radicals and premature ageing.
This is what happens in SPMS - ie neurodegeration in sites of old infammation from RRMS.
Now I had inflammation just following radiation treatment to my neck. This could not be seen on MRI but I had l’hermittes so it must have been there. The l’hermittes went away in 1991 but my current problems started 7/8 years ago.
I only have lesions in the area that was radiated and a clear LP and VEPs.
My problem is my right leg which is slowly getting more spastic and weak. The nerves are still working but are obviously dying. I feel that I need to take action before they are actually dead.
I have been looking at Mesenchymal Stem Cells for neuronal repair. These stem cells do not require you to have your whole immune system overhauled with chemotherapy. The treatment lasts only 3 days.
I am in contact with Stemgenex in California (San Diego). They are involved in Government Stem Cell trials etc. It also reassures me that they are not in Mexico or China etc.
The cost is 14,000 US dollars
The hardest part will be telling my husband as he will be nervous of the risks. Although with Mesenchymal Stem Cells the risks I am told are minimal which is why they are allowed to do it in California and not hiding away in Mexico.
But the thing is I am prepared to take any risks rather than carry on deteriorating with neuros scratching their heads and giving me no treatment. I just feel I need to fight with anything I have got before it has all gone.
If all goes to plan I will be going in the next 2/3 months - wish me luck !