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Numbness, and a lot of questions!

Posted: Tue Oct 18, 2016 7:21 am
by Eggotchi
Hi Everyone,
I'm Nikki and I have been unwell for about 15 years. I was diagnosed with ME about 12 years ago, and since then pretty much every symptom i've had has been put down to the ME. I also went on to develop type 1 diabetes, and so that has caused further problems.

Two weeks ago i had a nasty headache and went to bed.. during the night both of my thighs went numb, and over the next few days the numbness spread downwards across the inside of my knees and down my shins. I have had no pain, only loss of sensation. When i first went to the gp they dismissed me and blamed my diabetes, but having gone back today to see a different GP i now know that it is not diabetes and is more likely related to the central nervous system. I'm now waiting for a neurology referral but having read around, i wanted to ask whether this presentation of numbness sounded like an MS symptom or not. I just want to get my head around the possibilities I guess...

Re: Numbness, and a lot of questions!

Posted: Tue Oct 18, 2016 10:08 am
by lyndacarol
Eggotchi wrote:I'm Nikki and I have been unwell for about 15 years. I was diagnosed with ME about 12 years ago, and since then pretty much every symptom i've had has been put down to the ME. I also went on to develop type 1 diabetes, and so that has caused further problems.

Two weeks ago i had a nasty headache and went to bed.. during the night both of my thighs went numb, and over the next few days the numbness spread downwards across the inside of my knees and down my shins. I have had no pain, only loss of sensation. When i first went to the gp they dismissed me and blamed my diabetes, but having gone back today to see a different GP i now know that it is not diabetes and is more likely related to the central nervous system. I'm now waiting for a neurology referral but having read around, i wanted to ask whether this presentation of numbness sounded like an MS symptom or not. I just want to get my head around the possibilities I guess...
Welcome to ThisIsMS, Nikki (Eggotchi).

If you have had a vitamin D blood test (the "25-hydroxy D"), please share the test result number with us. (People with MS often have low nutrient levels: vitamin D, vitamin B12, magnesium, zinc, or others.)

If you have NOT had this vitamin D test, please ask your GP for it. Ask for the blood test and ask for your own copy of the test results so that you have the actual number (and please share the results with us – vitamin D is a special interest of mine lately).

Not only has vitamin D deficiency been linked to MS, but it has been linked to diabetes, headaches, and more. In fact, there are vitamin D receptors on almost every cell in the body; vitamin D is necessary for every body system:

Vitamin D and Cardiovascular Disease Prevention (46 min.), 3/2009
Dr. David C. Sane, MD, FACP Wake Forest University Health Sciences


@8:46 - list of Vitamin D Receptor Distribution in body systems ( )
Systems:
Gastrointestinal
Cardiovascular
Renal
Endocrine
Reproductive
Immune
Respiratory
Skeletal
Muscle
Epidermis
CNS [Central Nervous System]
Connective tissue

@9:16 But it's not all just the cardiac and vascular tissues that we're interested in. Of course, the heart and the blood vessels sit within the entire body and are influenced by other cells and other tissues. As Dr. Garland just mentioned, pancreatic beta cells, of course, have the vitamin D receptor and could influence insulin secretion and glycemic control. And as he also mentioned, it's present in immune cells. And, of course, now, as Russell Ross taught us years ago…

@18:34 There are data showing higher levels of CRP, IL-6 in patients who are vitamin D deficient. Vitamin D affects the distribution between T-helper 1 and T-helper 2 type cells. MMP-2 and MMP-9, which are matrix metalloproteinases, which are thought to be involved in plaque rupture and cause the acute expression of atherosclerosis and cause the rupture of this [pointing to diagram] fibrous cap. MMP-2 and -9 levels are higher in subjects who are vitamin D deficient.

Re: Numbness, and a lot of questions!

Posted: Tue Oct 18, 2016 10:38 am
by Eggotchi
Heya, thanks for the reply. I haven't had a blood test yet to check levels but I will share them as soon as I do. :)

Re: Numbness, and a lot of questions!

Posted: Tue Oct 18, 2016 4:11 pm
by ElliotB
Sorry to hear you are sick and have been for quite a while. Hopefully you will get some answers soon and be on you way to wellness. Can I inquire as to what kind of diet have you been following?

Re: Numbness, and a lot of questions!

Posted: Tue Oct 18, 2016 4:56 pm
by Scott1
Hi,

When you get your tests done, ask for a uric acid test as well (not urea). That will measure how well you are metabolizing purines.

If it's below the reference range, that is not a good thing. Usually they worry only if its high because that indicates gout which I doubt will be your problem.

Regards,

Re: Numbness, and a lot of questions!

Posted: Wed Oct 19, 2016 7:22 am
by lyndacarol
Eggotchi wrote:When i first went to the gp they dismissed me and blamed my diabetes, but having gone back today to see a different GP i now know that it is not diabetes and is more likely related to the central nervous system. I'm now waiting for a neurology referral but having read around, i wanted to ask whether this presentation of numbness sounded like an MS symptom or not. I just want to get my head around the possibilities I guess...
I noticed in your post in the Introductions forum that you are in Wales. So, I looked into the vitamin D angle and Wales.

In 2012, Dr. Steve Davies, a consultant endocrinologist at University Hospital of Wales in Cardiff, noted that 30% of the population in Wales was deficient; that "at our latitude, sunlight is often inadequate to generate sufficient vitamin D between September to May, so there is only a small summer window to produce vitamin D." Dr. Davies (in conjunction with Dr. John Harvey of the North Wales Clinical School, Dr. David Price from Swansea University, and Dr. Carol Evans from Cardiff University) produced the first all-Wales medical guidelines by the Welsh Endocrine and Diabetes Society in response to the increasing number of people with vitamin D deficiency.

I understand the current recommendation by the UK's Scientific Advisory Committee on Nutrition (SACN) is 7-8.5 micrograms (µg) of vitamin D a day for children under 5; and 10 micrograms (µg) [this is equivalent to 400 IU] of vitamin D a day for adults. (http://www.nhs.uk)

After glancing through http://www.wmic.nhs.uk/pdfs/prescribing_protocols… I am stunned at the limitations on diagnosis and treatment and at the paltry recommended amounts. Good luck seeing a GP or neurologist who will investigate and treat a vitamin D deficiency aggressively!

(By the way, vitamin D deficiency has a proven link to diabetes – not only the endocrine system, but also the central nervous system; in fact, every system in the body.)

Re: Numbness, and a lot of questions!

Posted: Mon Oct 24, 2016 12:08 am
by Eggotchi
ElliotB wrote:Sorry to hear you are sick and have been for quite a while. Hopefully you will get some answers soon and be on you way to wellness. Can I inquire as to what kind of diet have you been following?
Heya,
Sorry for the slow reply. I haven't been following any diet in particular. I eat healthily though, try and make my 5-a-day, don't tend to eat junk, and am a healthy weight.

Re: Numbness, and a lot of questions!

Posted: Mon Oct 24, 2016 12:12 am
by Eggotchi
lyndacarol wrote: In 2012, Dr. Steve Davies, a consultant endocrinologist at University Hospital of Wales in Cardiff, noted that 30% of the population in Wales was deficient; that "at our latitude, sunlight is often inadequate to generate sufficient vitamin D between September to May, so there is only a small summer window to produce vitamin D." Dr. Davies (in conjunction with Dr. John Harvey of the North Wales Clinical School, Dr. David Price from Swansea University, and Dr. Carol Evans from Cardiff University) produced the first all-Wales medical guidelines by the Welsh Endocrine and Diabetes Society in response to the increasing number of people with vitamin D deficiency.
Thanks for the info! My family are quite outdoorsy and so we spend a lot of time in the 'sunshine' (such as it is in Wales!). I don't think I am lacking, but i will try to find out if i am offered another blood test. Thanks!

Re: Numbness, and a lot of questions!

Posted: Wed Oct 26, 2016 5:45 am
by LizardKing
Eggotchi wrote:
lyndacarol wrote: deficiency.
Thanks for the info! My family are quite outdoorsy and so we spend a lot of time in the 'sunshine' (such as it is in Wales!). I don't think I am lacking, but i will try to find out if i am offered another blood test. Thanks!
She tells everyone who posts on this forum to get a vitamin D test, she is shilling for her website HARD here.