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Going For It - Wish me luck

Hi Folks,

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 !

Moyna xxx

moyna

i have many reservations about what you say BUT i am not living with ur ms and i hope you find the answers/results that you seek.

ellie

3 Likes

Oh dear Moyna, I do wish you all the luck in the world. Who wil be going with you? it is a massive undertaking. Will the NHS do follow ups for you and are they in agreement for you to try this?

much love Pollyyxx

good luck moyna

as poll says, will the NHS do follow up?

hope it goes brilliantly for you.

carole xx

Good luck from me too.

I know you’ve had so many problems with getting a diagnosis so I’m happy for you to be trying something different. Blimey it’s a lot of money though.

I really hope it does what you need it to.

Sue x

Hi thnx,

It is not at all like HCST which has a lot of risks attached to it as it involves the immune system. Since my LP was clear my immune system is not at fault and I probably dont have MS.

Moyna xxx

Me again.

just been googling stemgenex…it reads that the FDA have not given their endorsement to this treatment.

Oh Moyna, are you sure about this hun?

luv Pollx

Sorry, I dont mean to be negative…Ive been desperate for answers too..it took several years after being wrongly diagnosed with PPMS...to being told I have hereditary spastic paraplegia...but theres not even any proof of that!

I`ve seen 16 different neuros!

I asked to see a top MS doc in Leeds, but was refused.

Just looking out for you Moyna.

luv Pollx

hi again moyna

i had the ccsvi procedure at a cost of £7000 in 2010.

not as expensive as the stem cell treatment but it wiped our bank accounts out.

i felt brilliant afterwards and even before i got off the bed i could tell that i wasn’t lop sided any more.

me and hubby set off for a meal in edinburgh and i was walking so fast the poor old man couldn’t keep up with me.

sadly the improvements didnt last for longer than 6 months but i don’t regret it because if i hadn’t tried it i would always have wondered “what if?”

so just explaining why i understand you wanting to take the risk.

please make sure that you are safe or i will have to live with the guilt!

carole x

Loads of luck and best wishes Moyna, please double check everything, if you get there and feel uneasy don’t stay.

Jan x

I do find it amazing to hear of stories of ccsvi making huge improvements even in the short term. Yet doctors seem to think it is all placebo effect.

Moyna x

I was out shopping last week with my 80 year old mum when I went over on my ankle. I collapsed on the pavement and couldnt get up. My Mum tried to help me but if I pulled on her I would have pulled her down too. I had to ask a passer buy to help me up and she helped me in to a coffee shop as I could not put my weight on the foot. After an hour I could just about get back to the car.

This experience made me realise that I would take any risk to get better. I just cant keep going the way I am. I feel I need to go now as I am still able to get there and outcomes will be better if the nerves are not dead already.

It is going to take years to get FDA approval for this and if I could halt whatever I have I would wait. But I cant and whenever approval does come it will be too late for me. Positive Results are being seen so that is good enough for me.

Moyna x

Alright Moyna, you`ve made your decision to go. I honestly wish you all the luck in the world and hope you get good results.

I`ll be thinking of you and hoping you stay safe hun.

much luv Pollyxx