Excessive water intake with MS

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Excessive water intake with MS

Postby chris12453 » Fri Feb 02, 2018 6:26 am

Good Morning all,

I was diagnosed with MS about 3 years ago now (I am 31 now) and have certainly been through my bouts with all kinds of symptoms and drug combinations above and beyond my Copaxone to rectify issues. With that said, over the last year or so I have been seeing a change in my body where I suddenly need to intake massive amounts of water. To give you a bit of my background a bit, I am an avid cyclist (mainly mountain biking but I do road as well) and runner. Prior to my current situation I COULD (I preface could for a reason) go every day with one or two cups of water and be perfectly fine. Now, over the last year I have seen the "need" for water increasing. When I say increasing I am talking about liters (like 6, sometimes more). I was typically able to put in my hard work out drop all the excess water from my system and be good to go. It should be stated that I also subsequently started experiencing water retention as a result and this has also become more and more of a problem. Moving forward to today, I go into more or less drinking fits. I cannot quench a thirst, dry mouth, extreme pain from bloating and now abdominal weight gain. Up until roughly 6 months ago I was 153 pounds and with all this going on I am not creeping up in weight and have now hit 163 (I know its not a lot but it keeps going up and in the wrong direction) while maintaining my daily cardio work. I was put on chlortalidone to help with the retention but we are dealing with water intake that the kidneys just cannot process.

I have had blood test after blood test and nothing has come back with a red flag. While I do have IBS-C issues as well that is controlled by amitiza, milk of magnesia and suppositories, I am of the belief that this issue is unrelated to that since it started way before the water issue. My primary doctor is very good and willing to try anything to help me. My neurologist and endocrinologist seem to just blow this issue off. I am going to be making an appointment with an MS specialist at Mt. Sinai, but as we all know those appointments are months out. I am looking to see if anyone has had symptoms like this and what treatments might have been recommended. Another thing I should mention and my primary doctor is taking the bull by the horns and setting up a abdominal CT for this. My T-Spine MRI report mentioned that T2 hyperintensity was seen anteriorly adjacent to the right kidney, which may represent interposed, fluid-filled colon. Has anyone ever had or seen this? Know what it means?

Any help would be great. Realistically above and beyond my IBS which is more of a pia than anything else and this water intake, I have been able to settle many of my other issues that has become evident since my diagnosis.

Thank you for anything you might be able to provide.
Chris
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Re: Excessive water intake with MS

Postby jimmylegs » Fri Feb 02, 2018 8:11 am

hi chris from your files, can you share any specific nutritional bloodwork results?
the red flag levels do exist, technically, but they won't necessarily be set up properly at your local area labs.
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Re: Excessive water intake with MS

Postby chris12453 » Fri Feb 02, 2018 8:22 am

Hi Jimmy,

What bloodwork results would you be looking for specifically. I have quite a few. The labs I have access to are Testosterone, Lipid Panels, Thyroid with TSH, Vit D, Comp Metabolic Panels, B12 and Folate, CBC w/ Differential/Platelet <--- These are the most recent August 25, 2017 which is roughly the time the issue started presenting. I am scheduled for new blood work after my CT scan. Everything after that is from April, 2017

Thanks
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Re: Excessive water intake with MS

Postby jimmylegs » Fri Feb 02, 2018 11:31 am

hi detailed results (eg including units) for the vit D, B12 and folate would be a good place to start.
any chance you have results for or can order a few more tests? such as serum magnesium, serum zinc, serum ferritin, serum copper, serum selenium? maybe even serum uric acid?? they all come back 'normal' but deficiency exists within the normal range. ms and other chronic disease patients sit in the low end of the normal range, healthies high or even above normal.
you might also have some electrolyte levels kicking around which are nice to know but not need to know. the red flags on those are by and large ok.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Excessive water intake with MS

Postby chris12453 » Fri Feb 02, 2018 12:06 pm

I do have the results for vit D, B12 and folate. I will look for them when I get home from work. My physicians patient portal is in error state, and I am unable to download the results right this second. I can ask for the other tests you suggested. I've already met my deductible for the year, so I can go crazy with testing.
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Re: Excessive water intake with MS

Postby jimmylegs » Fri Feb 02, 2018 12:13 pm

i like the sound of that!
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ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Excessive water intake with MS

Postby whyRwehere » Sat Feb 03, 2018 12:49 am

My husband had an infection (UTI) over the summer, and no amount of water would quench his thirst, yet he was dehydrated. A nurse said he needed electrolytes, which did help. Perhaps all your exercising is depleting these too much?
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Re: Excessive water intake with MS

Postby NHE » Sat Feb 03, 2018 4:20 am

chris12453 wrote:Any help would be great. Realistically above and beyond my IBS which is more of a pia than anything else and this water intake, I have been able to settle many of my other issues that has become evident since my diagnosis.

Thank you for anything you might be able to provide.

The following topic may be of interest to you.


My experience with protium oxide: If I drink a 12 oz glass plain, then it will pass through me in about 15 minutes. However, if I take the same 12 oz and use it to mix up a protein drink with my protein powder, then my body holds onto it for a lot longer, e.g., 2 hours or more.
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Re: Excessive water intake with MS

Postby jimmylegs » Sat Feb 03, 2018 4:25 am

ding ding ding. electrolytes and pufas helping in thx's case
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Excessive water intake with MS

Postby chris12453 » Sat Feb 03, 2018 5:52 am

Alright, evidently I didn't have hard copies so I had to wait to post any responses. I have attached the images of the results for the vit d, b12 from August. I would imagine you gathered from my original post above, its quite difficult to get the water to flush from my system. That constant sloshing sound is quite irritating at this point.

https://imgur.com/5STVv2U
https://imgur.com/cs4v5MD

The levels seem appropriate, at the time. Not sure what they look like right now. I do have some of the other tests if they seem applicable, I can link them as well. During my exercise, whether it be indoors or outdoors, I consume shot blocks or Accel Gels from Pacific Health. After my work out usually I down a bottle of water and gatorade so I'm not too sure I am washing too much out of my body with the amount I put back in, but it is certainly something to look at. I should note that probably about 10 months ago, I did take a blood test about 40 minutes after a work out, didn't seem to even reflect I had done anything strenuous. Then again, I wasn't having this water debacle so there is that.

I do take magnesium, fish oil, chondroitin and glucosamine, cinnamon, b12 supplements just for the record.

Thanks
Chris
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Re: Excessive water intake with MS

Postby jimmylegs » Sat Feb 03, 2018 6:03 am

a ha!
b12 and d3 do look great. i am a little hesitant on d3 that high, without having a handle on cofactor status. specifics re any and all supplements taken next pls. prioritizing magnesium details - form, daily dose, timing in relation to d3 intake etc.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Excessive water intake with MS

Postby Zyklon » Sat Feb 03, 2018 7:40 am

chris12453 wrote:Hi Jimmy,

What bloodwork results would you be looking for specifically. I have quite a few. The labs I have access to are Testosterone, Lipid Panels, Thyroid with TSH, Vit D, Comp Metabolic Panels, B12 and Folate, CBC w/ Differential/Platelet <--- These are the most recent August 25, 2017 which is roughly the time the issue started presenting. I am scheduled for new blood work after my CT scan. Everything after that is from April, 2017

Thanks


Heya,

What about blood sugar tests? Cortisone messed up my blood sugar levels for some time.
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Re: Excessive water intake with MS

Postby NHE » Sun Feb 04, 2018 3:14 am

NHE wrote:
chris12453 wrote:Any help would be great. Realistically above and beyond my IBS which is more of a pia than anything else and this water intake, I have been able to settle many of my other issues that has become evident since my diagnosis.

Thank you for anything you might be able to provide.

The following topic may be of interest to you.



Rereading the other topic I noted that the person was drinking reverse osmosis (RO) water. This may have contributed to the problems they experienced. RO water has such low ion and mineral content that it will remove minerals from your body.

What type of water are you drinking?
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Re: Excessive water intake with MS

Postby jimmylegs » Sun Feb 04, 2018 5:22 am

this 2005 doc from the who has lots of interesting info. a section on trace nutrients follows the below:

http://www.who.int/water_sanitation_hea ... 1#page=157
"Some researchers have argued that softening effects also reduce trace nutrients and increase sodium (via ion exchange) in drinking water or that there is a negative health effect from decreased mineralization (total of dissolved salts and electrical conductivity changes). Others argue that demineralized water is more aggressive to piping, and thus increased risks could be caused by exposure to extracted trace elements like lead and cadmium. Some studies have indicated that cooking foods in demineralized water increases the depletion of essential minerals from the foods, thus potentially adversely affecting health.
The health significance of these hypothesized relationships with drinking water in any given population would be highly dependent upon many factors including diet, lifestyle, smoking, population genetics, occupation and other confounders."

not a fan of the citation style in the above - but it is a book, not an article.
among the given references, the most likely relevant item is rather old:

EURO Reports and Studies
Health Effects of the Removal of Substances Occurring Naturally in Drinking-water, with Special Reference to Demineralized and Desalinated Water
Report on a Working Group
20-23 March 1978
https://www.ircwash.org/sites/default/f ... E-5721.pdf

contains more info on potential impacts on essential nutrients. having tried, throwing the terms
reverse osmosis water human health
into google scholar is not showing much evidence of researchers having tested these hypotheses. i'll have to go back over thx's topic myself, see what we found then!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Excessive water intake with MS

Postby ElliotB » Sun Feb 04, 2018 8:37 am

High quality filtered water removes the good along with the bad but there is so much 'bad' in tap water that high quality filtration is an absolute necessity. RO units are available with re-mineralizers which safely adds back minerals removed from filtration - I have been using this type of RO filter system for a couple of years and have been very happy wit it.
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