New to MS ...and have questions

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New to MS ...and have questions

Postby Twistedangel » Wed May 22, 2013 1:53 pm

Hi everyone! I am new to this site and was diagnosed with MS at the beginning of March. ... In January I woke up one morning with blurred vision in my right eye. After 2 weeks of this, with increasing pain upon moving the eye, I went to my doctor, who sent me to an eye specialist, who diagnosed me with optic neuritis and possible MS. I was sent to a neurologist who ordered 2 MRI's. One head MRI and then a neck and spinal MRI. He sent me for blood work also, and that all came back okay. The head MRI showed 6 lesions, but the neck and spinal MRI were normal. My neuro said he was confident in saying it was MS. He recommended I start a drug therapy of self injections, but I opted not to do that. Not at this point. However, over the last couple of weeks, I think I have had more symptoms show themselves. ... Some days, my legs feel so tired and heavy, like they won't hold me up. My feet, ankles and calves have been swelling, which leaves a pins and needles feeling. And the last 2 days, our humidity has been up with some impressive thunder and lightening storms! (I live in Ontario, Canada) Just before the storm starts, I feel like there are electric pins and needles in my brain jumping up and down and zinging all about. ...Does that sound crazy? It drains me so much that I have to lay down. But once the storm is over, I feel much better ... Has ANYONE experienced this??? ...
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Re: New to MS ...and have questions

Postby IamMOM » Wed May 22, 2013 3:41 pm

I can't answer your questions.. Sorry
I am however in the middle of your story... Optic neuritis .. Now MRI... That was today I go next week for results.
I also live in Canada. East coast. :)

I was very sure I did not have ms before however as time passes and I think about past problems etc... I am thinking it may or may not show up in MRI now but a very possible future for me. :/

I have a question for you... Why did you say no to the drugs? I have felt I would do the same and the one person I talked to about this thought I was crazy... Her take was why not try to hold off on bad things happening? So now I rethink.... :) would like to know your side.
I may never have to make this decision however I like to be prepared.


Oh and if I were you I would call doctor and tell the symptoms you are having.
Everyone on here is super informative too though :)
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Re: New to MS ...and have questions

Postby MrsMomTo6 » Wed May 22, 2013 8:33 pm

Hello Twistedangel,
I too, am new, but, have not made my intro yet.
I just wanted to post something that concerned me about what you said about the swelling in your feet/ankles and legs...You need to see an internist about those symptoms. That is not MS causing the swelling and lower limb swelling does need to be addressed. Not knowing all your med. hx. makes it hard to assess. (as a nurse) :)

I know what you are feeling with the weather. My body can 'predict' tornados!! :) They make me feel like I am 100 years old!

Get that swelling checked out!
:)
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Re: New to MS ...and have questions

Postby want2bike » Mon May 27, 2013 6:36 am

Do not know if you have seen the information on Vitamin D but that could be the most important thing to do. Most people with MS should be taking 10,000 IU of vitamin D3. Might want to get your level checked since you live in Canada and getting it from the sun it not an option.

http://www.youtube.com/watch?v=yhUuf2QZd_E

http://www.youtube.com/watch?v=--NqqB2nhBE
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Re: New to MS ...and have questions

Postby MrsMomTo6 » Tue May 28, 2013 10:30 am

Just wanted to post a comment about the Vitamin D research.

My best understanding of the ''job' of Vitamin D is to transport calcium from the GI tract, into the bloodstream.
Vitamin D levels are directly impacted by the level of Calcium in the blood stream.
To maintain the proper, delicate, balance of Calcium in the blood, Vit D has to transport more or less Calcium to make sure the levels are sufficient in the blood, if there is too much calcium in the blood stream,(hypercalcemia) Vitamin D's job is to 'REDUCE" so that more calcium in NOT ABSORBED into the blood stream.

So, what does that tell us? our body has a reason to reduce Vit. D...and it is not a mystery why the Vit. D is low...

Vitamin D levels reducing is evidence of the direct relationship on the Calcium levels in the blood. IF THE serum CALCIUM IS NORMAL, and the VITAMIN D IS LOW, then our doctors SHOULD be drawing a PTH (parathyroid hormone) level. Why? Because the only job of the PARAthyroid is to regulate the VITAL element, CALCIUM, in our blood stream which of course, this element, calcium, has a direct impact on nerve health, conduction and the nerves ability to do their job...if the the parathyroid has even one of the four parathyroids, acting abnormally, then, the PTH will be abnormal, or it will be 'normal' if the calcium is high. (both are positive findings for evidence of a parathyroid tumor. Of course Vitamin D levels dropping, in the presence of abnormal PTH levels, is evidence that our body is doing what it should do, to protect us from the negative effects of high calcium...the body MUST reduce the Vit. D level, to lower the serum calcium.)

Why? Because Vit. D's job is to transport calcium into the blood stream. Our bodies would not be doing what it is suppose to do, if it did not lower the Vit. D level.

So, if all MS patients tend to have low Vit. D levels, why are ALL our Neurologist NOT testing to see if we have abnormal PTH levels as well? Is it ignorance?

I have had low Vit. D ( in the low teens) since 2009, when all my MS symptoms started. What did my doctors do? They put me on 40,000 I.U. weekly to get my Vit. D up. At the end of the treatment, sure enough, my Vit. D, was up to 50. They then stopped the Vit. D. A few months later, my Vit. D was back DOWN in the low 20's, to teens again. What did they do? Put me back on Vit. D again. They have done this every year since then...until, I was sent to an endocrinologist for a Pituitary tumor found in my brain scan. ONLY THEN, did anyone say the word, 'Primary HyperPARAthyroidism." So, I researched that disease. And, I learned a lot.

Read here about Vit. D's role: http://www.parathyroid.com/low-vitamin-d.htm

I can only find very little research on anyone evaluating what the role of the parathyroid is in MS patients. What is the incidence of Primary Hyperparathyroidism in the MS population? My neuro would not even discuss it with me??? I was told, 'what are you looking for?' 'What do you hope to learn from this?'
....Well...I answered...'I would like to learn why my Vit. D is always having to be treated...when it appears my Vit. D being low, may be my bodies way of 'protecting me' from the adverse affects of a defective parathyroid gland adversely affecting my Calcium---which of course...affects my nerve health, and being that I have a 'neurological (nerve) disease,' it just seems...relevant to look at the parathyroid gland, which is of course the regulator or Vit. D levels...?'

How do you treat primary hyperparathyroidism? A simple surgery to remove the faulty gland. No expensive life long drugs. There are reports of people post gland removal feelin 'very good' again...and, well, that sounds good to me.

Here is a list of parathyroid symptoms many of them match the MS patient: http://www.parathyroid.com/parathyroid-symptoms.htm

I wonder how many people who have MS, also have parathyroid disease?

How is it diagnosed? Very easily.

Draw: 3 weeks of the following labs.
Serum Calcium.
Serum PTH.
Serum Vit. D,23,
Serum Vit. D, 1, 25.

Ask for a copy of the labs and compare them to the results on parathyroid.com. If the criteria is met for parathyroid disease, then, we are all in the same shoes...and need to find a doctor who will discuss this further with us.

Is there any chance that some of our MS symptoms are easily treated? I

Is Vitamin D, really the warning flag of something else, vs. a component of the complicated MS patient?

I do know? But, based on my reading, taking more Vitamin D, is NOT what I should do. I just am at a loss to find a doctor who is smart on this subject or hyperparathyroidism, AND who has no skin in the game in the MS community or the parathyroid research community, and can discuss this 'objectively.'

If anyone out there knows of such a doctor, I would love to talk to them.
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Re: New to MS ...and have questions

Postby CaliReader » Tue May 28, 2013 3:49 pm

Hi,

Thanks for the medical perspective.

I had parathyroid levels measure normal a couple weeks before my vit D levels showed significantly below the lowest mark on the normal scale. It was my first measurement for both numbers.

I don't know how this happens biochemically. I just have the numbers on my chart.

I was instructed by my endocrinologist to increase vit D through supplements for a month and stop. My neurologist encouraged continuing vit D supplements long term, which is what I'm doing for now.
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Re: New to MS ...and have questions

Postby NHE » Tue May 28, 2013 5:31 pm

MrsMomTo6 wrote:Read here about Vit. D's role: http://www.parathyroid.com/low-vitamin-d.htm


parathyroid.com wrote:Vitamin D does one thing in our bodies. Only one thing... it helps our intestine to absorb calcium from the foods we eat.


That statement seems a little short sighted especially considering the large number of papers that describe a physiological role for the vitamin d receptor beyond that of calcium absorption. Here are just a few examples of review papers discussing the vitamin d receptor that can be found at PubMed.
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Re: New to MS ...and have questions

Postby want2bike » Wed May 29, 2013 5:50 am

Vitamin D is important to more things than transporting calcium. When I first had my level checked it was 19ng/ml. 30 ng/ml to 90 ng/ml was the level they claim was healthy. They gave me some Ergocalciferol (D2) because they are stupid and don't understand that cholecalciferol (D3) is the form we should be taking. I dumped the D2 in the trash and started taking 5000IU D3 a day. Also spent 10 minutes a day in front of a sunscreen. After 4 months my level was 72.2 ng/ml. It is summer now so I will continue 5000 IU and about 1/2 hour walk in the sun. The best way to get vitamin D is from the sun but if you live in the north that can be a problem Also as we get older our bodies have a problem since they do not work as well as they did when we were young. There is a lot of evidence out there showing vitamin D is important for people with MS. Why are we low on vitamin D? We do not spend time in the sun. That is where we should be getting our vitamin D. The doctors have done their best to scare us about the sun because the want to keep us sick so they can sell us their drugs. It is a sick world we live in and if we do not figure it out we will stay sick. Anyone with a thyroid problem should check the Iodine level. With all the process foods we eat our bodies are deficient in many things.

http://articles.mercola.com/sites/artic ... n=20130504
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Re: New to MS ...and have questions

Postby Letti » Fri May 31, 2013 8:10 am

Hi All,

Saw this post and the responses and wanted to chime in.... I was a healthy single mother of 4 up until 9/11/12... I woke up that morning and my toes were numb... I chalked it up to my age and maybe the possibility of the start of diabetes since my mother had it... long story short by that Sunday I was completely numb or tingling uncontrollable from the chest down.... including my left arm... I was scared to death but even then thought maybe I had a slipped disc pressing on my spin.... by Nov the docs concluded that I had transverse myelitis (maybe spelled wrong) and told me it would take about 6 months to heal if I even healed completely... at this time 1 lesion in my cervical spine causing all the chaos...

In March my neuro set me up for follow up MRI's and found several lesions in my brain... So 2 days before my 40th b-day I found out I have MS.... Yea!

Being an upbeat person to begin with I went through a short period of sulking and being agree with God then bounced back... and decide if life was going to give me lemons I'd make lemon aid :)


So I starte4d researching a lot of others who have MS, foods, natural remedies, vitamins and medicines...

I did agree to start an injectable (Copaxine). I have been on it now for a month and a half... I chose to do the injectable and Copaxin for a few reasons... 1. For my four boys... I need to stay as healthy as long as I can for them. 2. I went from having no signs of MS to 1 lesion to multiple lesions in less than a year...3. Copaxin other than the daily injections does not have the side effects the other meds have like flu like symptoms or having to check your liver. Plus as an MS patient any fighting chance I can give myself I will...

Now can I say the Copaxin is wonderful? No simply because it can take up to at least 4 months to build up in your system to really begin working... I have since starting the Copaxin had a bad episode and took a round of steroids.... so not sure if the MS triggered it or the change my body is making with the Copaxin did... but I am feel good right now...and the daily injections are a breeze... the support team behind the Copaxin product is fantastic... they work with you and the team of nurses is wonderful.

I have also begun to research the vitamin aspect and was tested 2 days ago for my vitamin D levels... I should have the results today... right now I only take 1000 IU a day... I am starting a multi vitamin and may add additional vitamin B12, B6 and Omega 3 (I believe without having my notes in front of me)

Food wise I have begun to cut out dairy and all Gluten products... this comes pretty easy for me because I love fruits and vegetables, fish and so on... I also have a green shake every morning (1/2 green apple, 1/2 a pear, 1 banana and a handful of spinach) I have seen a difference in how I feel... and can tell the difference when I slack on the eating side of my routine. I limit my drinking of achohol to maybe every other weekend....

I have not dealt much with the fatigue side of MS... Besides the numbness, tingling, I have had vision issues in one eye and balance issues... but I also walk 2 miles 3 to 4 times a week and try to do 4 / 5 exercises (sit ups, pushups, squats, planks and a triceps exercise) every day.

I hope that this helps in some way.... the one question I have is... Is there anyone out there that can say they have periods of time where they are symptom free completely between episodes?
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Re: New to MS ...and have questions

Postby NHE » Fri May 31, 2013 3:54 pm

Hi Letti,
Welcome to ThisIsMS.

Letti wrote:I have not dealt much with the fatigue side of MS... Besides the numbness, tingling, I have had vision issues in one eye and balance issues... but I also walk 2 miles 3 to 4 times a week and try to do 4 / 5 exercises (sit ups, pushups, squats, planks and a triceps exercise) every day.


That's great! Keep staying active. If not, then MS can flatten you like Wyle E. Coyote getting run over by an Acme steam roller. I am noticeably thinner now. Image
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Re: New to MS ...and have questions

Postby CureOrBust » Fri May 31, 2013 5:34 pm

Letti wrote:... but I also walk 2 miles 3 to 4 times a week and try to do 4 / 5 exercises (sit ups, pushups, squats, planks and a triceps exercise) every day.
Use it or loose it I say. But do not forget to stretch as well. I think it also helps by making the full range of motion a little easier for muscles that don't work as well as they should (due to nerves of course).


NHE wrote:If not, then MS can flatten you like Wyle E. Coyote getting run over by an Acme steam roller. I am noticeably thinner now. Image
Do you think this is because you are now exercising or because your appetite has changed? or due to muscle mass loss?
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Re: New to MS ...and have questions

Postby NHE » Fri May 31, 2013 10:57 pm

CureOrBust wrote:
NHE wrote:If not, then MS can flatten you like Wyle E. Coyote getting run over by an Acme steam roller. I am noticeably thinner now. Image
Do you think this is because you are now exercising or because your appetite has changed? or due to muscle mass loss?


I was speaking metaphorically. MS = steam roller, me = Wyle E. Coyote.
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Re: New to MS ...and have questions

Postby CureOrBust » Sat Jun 01, 2013 5:02 am

:oops:
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