DMD for PPMS

Primary progressive MS
1

Would a DMD help ‘preserve’ the parts that are not affected by ppms.

Say someone dx’d with ppms had a left leg that was slowly weakening with no remission. If that person was given a DMD would it help to keep say the right leg in working order?

2

I have started a DMD and was diagnosed with PPMS. The idea is that it slows down any progression.

I guess you always run the risk of new problems but hopefully slowing it down might mean it is a long time arriving compared with not taking any DMD.

3

NICE will be issuing its decision whether to fund Ocrelizumab through the NHS prescription scheme by the end of 2018. Do not expect it to be successful; Sativex is not available after all.

The best we can do at present is to use CBD paste and take a high dose of pharma grade Biotin.

4

Hi Alun

I have the cbd oil that you put under your tongue, but can you tell me what you do with the paste please, and is it better than the oil?

Thanks

Pam x

5

Hello Pam,

I hope you are getting some benefit from the oil.

First of all, in terms of application using the paste is the same. Put under your tongue for about two minutes before swallowing.

In terms of whether oil is preferable to paste, it is a question of choice. I use the two together; a measure of paste with a drop or two of oil. The key factor is the strength of the paste or oil. I use a paste with a 16.4% CBD component and an oil with 14% CBD component. I dose myself three times a day.

As I have said in previous threads, it certainly helps me with neuropathic pain, bladder control, sleep and general wellbeing. Are you finding any benefits?

Regards,

Alun x

6

Hi Alun,

Thanks for this, very informative. I do get some help from the oil, but the taste is horrible. Think I will check out the paste from CBD brothers, and perhaps up the oil, as I have only been using at bedtime.

Once again, many thanks, glad it’s helping you.

Pam x

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7

Pam,

I use CBD Brothers too; I find them very efficient.

I like the earthy sweet taste of the paste but perhaps my taste buds are dysfunctional.

Since taking CBD and Biotin I have been able to stop taking Gabapentin, and also Emslex for bladder urge incontinence. Should NICE approve Ocrelizumab for prescription through the NHS later this year, I may discuss this with my neurologist. A lot depends on potential side effects; at least with Biotin and CBD there are none. It may not gain the approval anyway.

It looks like today’s debate in parliament on the legalisation of cannabis for medical purposes has been deferred until 6 July. Nothing like kicking the can down the road. We are way behind may EU countries on this matter.

Keep well.

Alun x

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