Hello, I'm newly diagnosed

[Allyally]

Hello, I'm Ally from Kent, I'm 27 and nearly two months ago I was diagnosed with RRMS.

I had been having minor balance problems and pins and needles since 2013 or 2014. December 2015 I had optic neuritis which is what started the diagnoses process.

At the moment I'm deciding which medication to choose, I was initially going to pick Aubagio as it's a pill and doesn't have flu like symptoms, however I was put off by the side effects (herpes, heavy periods, carpal tunnel, tooth problems and sciatica).

I've had a baby last summer so it's even harder to get used to the diagnosis. Some days the fatigue is so bad I can't even pick her up (well, I do obviously, but it does hurt).

Thinking about Avonex as it doesn't sound as scary, and being once a week I suppose it's alright to have flu symptoms for a day.

I was told my vitamin D levels are undetectable so they must be extremely low. The hospital neurologist asked my GP to prescribe high dose of this, but I was only given 800 so I take two each day.

I'm just trying to figure out what approach to have. I've read changes in diet might help, so I need to find out more.

Will be lovely to exchange support and advice with you all! This forum seems full of interesting things.

I hope you all are having a good day x

[lyndacarol]

Hello, I'm Ally from Kent, I'm 27 and nearly two months ago I was diagnosed with RRMS.

I had been having minor balance problems and pins and needles since 2013 or 2014. December 2015 I had optic neuritis which is what started the diagnoses process.

At the moment I'm deciding which medication to choose, I was initially going to pick Aubagio as it's a pill and doesn't have flu like symptoms, however I was put off by the side effects (herpes, heavy periods, carpal tunnel, tooth problems and sciatica).

I've had a baby last summer so it's even harder to get used to the diagnosis. Some days the fatigue is so bad I can't even pick her up (well, I do obviously, but it does hurt).

Thinking about Avonex as it doesn't sound as scary, and being once a week I suppose it's alright to have flu symptoms for a day.

I was told my vitamin D levels are undetectable so they must be extremely low. The hospital neurologist asked my GP to prescribe high dose of this, but I was only given 800 so I take two each day.

I'm just trying to figure out what approach to have. I've read changes in diet might help, so I need to find out more.

Will be lovely to exchange support and advice with you all! This forum seems full of interesting things.

I hope you all are having a good day x

Welcome to ThisIsMS, Allyally.

I am concerned to hear about your vitamin D levels being so low (your symptoms – balance problems, "pins and needles" and optic neuritis, fatigue – can be symptoms of vitamin D deficiency). And since you have a new baby, your levels have been especially decreased. Vitamin D is necessary for the proper functioning of cells in the mother's body; but a high vitamin D level is CRUCIAL to the development of a fetus/baby (and D is crucial to the growth of the child).

I believe that Kent is at a high latitude that does not allow the sun's rays to create vitamin D in the skin most of the year, so vitamin D supplements are necessary. 800 IU of vitamin D is not at all a high dose (in the minds of most experts today). In my opinion (I have no medical background), even 1600 IU/day is not enough for someone with "undetectable" levels. Individuals react differently to the same dose – some people absorb it efficiently and raise the level in the blood; other people, getting the same dose, do NOT process it efficiently and the blood levels will not change significantly. Watch this 7-minute interview of Dr. Robert P Heaney by Carole Baggerly of GrassrootsHealth:

Please thoroughly review http://www.GrassrootsHealth.net for all kinds of information on vitamin D. The GrassrootsHealth organization recommends regular vitamin D testing in order to monitor that a healthy level has been reached and maintained. (Request your own copy of any test results – you need to have the actual numbers.) You may also find the Coimbra High-Dose Vitamin D Protocol sub forum here interesting: http://www.thisisms.com/forum/coimbra-h ... tocol-f57/

It would be a good idea to know your child's vitamin D level as well.

[ElliotB]

What kind of diet are you on? Are you gluten free?

Are you supplementing your diet with nutritional supplements and vitamins?

Also, have you had complete bloodwork done?

[Scott1]

Hi,

When you said you were put off by the side effects do you mean they are problems you have already? can you go into a bit more detail about them?

Regards,

[Allyally]

Hi lindacarol, thank you for your reply.

While pregnant I did take pregnancy multi vitamins and continued to do so while breastfeeding. It's a good point though, I will get a copy of my blood test results and ask to test my baby. I wouldn't want to have passed on to her the low levels.

I watched the video, very interesting! That is such a big difference. I will speak to my GP and see what they say. Hopefully he'll be useful.

Hi Elliot, I'm not on any diet at the moment, well I try to eat as healthy as I can, but I do eat everything. The only thing being lactose intolerant I have to, of course, avoid certain dairy products. Why did you mention gluten free? Is it something to do with MS?

I've not had the full blood test that they should do before starting taking a medication, as I've just made my decision about Avonex yesterday. However I did have a blood test done on day of diagnosis in March, not sure what was tested, it only mentioned undetectable vitamins D in the letter. Will have to find out more.

I am taking just standard multivitamins, plus two 800IU vitamin D.

Hi Scott, to be honest apart from tooth fillings (even though I've got a great dental hygiene as confirmed by several dentists) and already quite heavy periods, I don't have other problems, but I'm just not prepared to deal with those mentioned in my initial post.

Thank you everyone

[NHE]

Thinking about Avonex as it doesn't sound as scary, and being once a week I suppose it's alright to have flu symptoms for a day.

I was on Avonex for 10 years. You can help minimize the side effects from Avonex by taking ibuprofen. Try 400 mg at the time of your shot and then another 400 mg about 4-6 hours later. Taking another 200 mg the day after is also helpful in clearing up the Avonex "hangover" effects.

I was told my vitamin D levels are undetectable so they must be extremely low. The hospital neurologist asked my GP to prescribe high dose of this, but I was only given 800 so I take two each day.

You may need a much higher dose like 2000-4000 IU/day to restore undetectable levels. Be sure to take the D3 form and not the D2 type as the D2 can actually lower your D3.
http://www.thisisms.com/forum/natural-a ... ml#p237957

Also, it's best to take your D3 with a meal containing fat in order to optimize absorption.
http://www.thisisms.com/forum/natural-a ... 27709.html

While pregnant I did take pregnancy multi vitamins and continued to do so while breastfeeding. It's a good point though, I will get a copy of my blood test results and ask to test my baby. I wouldn't want to have passed on to her the low levels.

In addition to vitamin D3, vitamin B12 is also important, both for a patient with neurological symptoms and a developing child. Even prenatal supplements often don't have enough B12 in them. It might be a good idea to get both you and your baby tested for B12. Please see the following two books for more information.

• Could It Be B12? An Epidemic of Misdiagnoses
  http://www.amazon.com/Could-Be-B12-Epid ... 884995691/
  
  What's Wrong with My Child?: From Neurological and Developmental Disabilities to Autism...
  How to Protect Your Child from B12 Deficiency
  http://www.amazon.com/Whats-Wrong-Child ... 610352440/

B12 is also discussed in-depth in the following discussion topic.
http://www.thisisms.com/forum/natural-a ... 24857.html

[lyndacarol]

While pregnant I did take pregnancy multi vitamins and continued to do so while breastfeeding. It's a good point though, I will get a copy of my blood test results and ask to test my baby. I wouldn't want to have passed on to her the low levels.

I watched the video, very interesting! That is such a big difference. I will speak to my GP and see what they say. Hopefully he'll be useful.

...

I am taking just standard multivitamins, plus two 800IU vitamin D.

Another 7-minute video from another vitamin D expert you might find interesting:

D*facts Pregnancy (7 min.) May 2007
Dr. Carol Wagner interviewed by Carole Baggerly


The woman should have her serum vitamin D levels checked.
Supplementation with 4000 IU vitamin D daily is recommended for pregnant women whose level falls below the 40-60 ng/mL range.