Forum

What a week it's been!

Primary progressive MS
#1

Monday morning I went to Dr’s for routine blood cholesterol check

Tuesday cook possibly last full-English I ever see and taste

Wednesday afternoon went back for results, and cholesterol going down nicely (so Dr tells me!) ← ‘OK’, family history

Then I hear the “by-the-way” your showing Vitamin D as low (score 16 and should be 50 plus) ← ‘OK-ish’, I have SP-MS

Also you’re showing signs of being pre-diabetic (I wasn’t expecting that one!) ← ‘not OK’, but what am I going to do?

With bad mood setting in I go home and buy a years supply of Vitamin ‘D’ 3,000 UI tablets (£12.97) and years supply of Biotin 10,000 mcg softgels (£14-97), with a wider plan to eat more Omega-3 oily fish ← so bring it on! ← I’m feeling sorted!

Thursday morning post arrives with DWP stamped envelope ← got cocky and completed the PIP forms myself sometime ago (“stupid is as stupid does” I hear you say?)

So been waiting on result following home assessment done 3 weeks ago by a nice Capita assessor

Friday morning text from bank showing an unexpected deposit

I did take away one tip from this MS site’s posts about keeping things factual and include medical reports, so included first diagnosis report ( by Radcliffe neuro almost 20 years ago) and report by current local neuro that wrote directly in comparison to Radcliffe report

Along with Assessor report to seal the deal - I got PIP (standard rate for both disability and mobility for next 3 years before further review, so I’m made up for Christmas

1 Like
#2

That’s quite a week.

You mention your Vitamin D levels. Were you tested for blood plasma for Vit D3 @ nmol/L? If so, your result does seem very low. I suggest you read the following article and discuss it with your GP to determine what dose you should be taking to bring up your levels to the recommended range.

On the Biotin front, the current Phase III clinical trial is using a daily dose of 300mgs. Your 10,000mcg dose is only the equivalent of 10mgs.

Many of us on the Forum take Biotin as a pharma grade powder in concentrated form, using a measuring spoon or scales to obtain the correct dosage. For instance, I take 300mgs daily, in three separate doses and I use a measuring spoon.

Assuming that you are taking Biotin to stall the progress of your MS, I suggest you may wish to think again about the amount you take. There is a useful Facebook group called ‘Biotin for Progressive MS’ that has useful documents about sourcing Biotin and ways to measure it.

I hope these articles are of some use.

Best wishes

Alun

#3

Hi Alun - thanks for the reply Regarding Vit D - yes this was all discussed with my Doc, and that’s how we ‘jointly’ settled on 3,000 UI dosage subject to further blood test in a few weeks time to re-assess/adjust as necessary. Regarding the Biotin dosage I know it is small (but psychologically buying it made me feel better!). I’m unlikely to take any as I’ve got my name put forward for the formal stage 3 Biotin trial list with Neuro support (when it starts!) through Addenbrookes. I was just moody when I came out of Dr’s, and I’m just overly keen to start the trial, and will give the 10,000 mcg lot to my wife if she wants for her hair and nails. I’ll do the trial regardless of receiving tablet or placebo (not that I’ll know what I’ve got!) just to feel personally things are moving along

#4

Good news on the PIP, it’s true, you really do need to lay out your case so well done to you

Sonia x

#5

Ok, it sounds like you are in complete control there.

Alun

#6

Well done i hate filling in the forms it always makes me so depressed. I usually get some help we have autism in the family so I’ve been filling forms for years but now my cognitive isn’t great it’s too much for me to cope with. Take care Michelle and Frazer xx

#7

Nice to hear good news…especially when it comes to PIP.

Pam x