MS and Extreme Thirst, Fatigue/WEakness, Low T

[chris12453]

Hello everyone,

I am new to the forums and was diagnosed with MS just about a year ago after months of testing. I am 29 years old and an avid runner and hard core mountain bike rider. I wanted to specifically indicate that before jumping into an issue I have been experiencing over the last several months. I typically experience the normal symptoms including but not limited to blurry vision, weakness and fatigue in my lower limbs, IBS-C, soreness, loss of concentration, etc. With this in mind, over the last several months I have been experiencing overall fatigue, extreme thirst (drinking liters and liters of water), water retention and the newest revelation is low Testosterone.

An example of a particular issue I am have is that I am finding that when I was once able to get on my mountain bike for hours, I am being relegated to an hour and half tops and I am toasted. I am also finding that in order to ride my mountain bikes, I need to ride my race bike which is roughly 6 pounds lighter than my trail bike because my body just cannot push that minimal weight differential. I approached my doctor about all this and we did several rounds of blood testing looking at myasthenia gravis, thyroid storm, inadequate or high cortisol levels, diabetes but everything came back normal. We did however find that my Testosterone levels were super low in the range of 118 ng/dl. I was put on a Testosterone supplement injection to bring my levels back up, but believe I am going backwards with my weight at this time.

I know this kind of sounds all random and out of sorts, but I try my best to put everything I am going through in text. Talking to someone is much easier to relay the information. I guess at this point, I am wondering if anyone else is experiencing the type of fatigue, extreme thirst, water retention and low T. Has a particular doctor correlated this to the MS or potentially another issue?

So at this time, I have a couple of things going. I have a follow up visit with my neuro next week and a visit with and endocrinologist setup for later in November.

I am currently taking the following meds:

- Copaxone (40mg - three times per week)
- Testosterone (1/2ml - one a week)
- Stool Softener
- Amitiza - 8mg x 4
- Diruex and Chlorthalidone 25mg as water pills
- Milk of Magnesia several times during the day to deal with IBS C and Water

All of my blood work comes back perfect every time with no deviation.

Any thoughts would be appreciated.

Thank You
Chris

[Scott1]

Hi Chris,

You never mentioned diet. Why on earth are you taking Diruex and Chlorthalidone? They are diuretics. They will harden your stools and make you thirsty.

I would stop doing that straight away, back off the milk of magnesia and change your breakfast around (not knowing what you do but can guess).

Eat a whole avocado as part of your breakfast and get some good fats into you. That will also add roughage that will be gentle. If you don't/can't do that add fresh pears.

You're also taking Amitiza which is supposed to increase the secretion of fluid from your intestines but will not be much use if you are creating blockages with impacted stools because you're dehydrated from the diuretics. If the IBS is causing some diarrhea then have a good look at what Amitiza is doing to you.

If you are in bad way, go and get a colonic irrigation from a bowel surgeon and let him go up there to have a good look around. Then start taking a good quality probiotic forever.

Switch from whoever advised you take the diuretics and Amitiza.

Regards,

[chris12453]

Hi Scott,

Let me work on answering a few of your questions for better clarifications.

Let start with my diet:

Breakfast (Can be any of the following): Dannon Non-Fat Greek Yogurt with fresh blueberries, Stonyfield Plain Greek Yogurt, Light English Muffins with sugar free jelly
Mid morning: ~5 prunes to keep things moving
Lunch: Salad (w/ cherry tomatoes, cucumbers, hard boiled egg, balsamic vinegar, red onion) or one of the non-fat greek yogurt above, special k cereals
Dinner: This is a wide variety, but mostly roasted or grilled chicken, salads (w/ cherry tomatoes, cucumbers, hard boiled egg, balsamic vinegar, red onion, black olives, etc), grilled pork chops, sweet potato fries to just name a few. There is the occasional steak and burger in there as well.
General Snacks: pretzel sticks, Turkey Hill Sugar Free Vanillia ice cream, special k cereals (w/ fat free milk or almond milk), fruits/vegetables (i.e. strawberries, cherrys, oranges, bananas), trader joes treks mix

Drinks: Green Tea, water, sparkling water, seltzers, powerade zero

I don't really eat much.

Now, with regards to the diuretics:

My doctors, Gastro, Primary and Neuro had me start them because of all the water retention issues I was having. Like I said I am drinking liters and liters of water which is causing a weight fluctuation of about 10 pounds (water weight) and my kidneys cannot flush that kind of water influx. Bare in mind, this all started occurring in July. Basically before July, everything was rather fine and I was drinking maybe a liter or two of water a day, like I said I don't typically eat too much, and was sitting around 155 lbs dry weight after exercise. In generalities, I sit around the 158 to 161 mark. Since this issue occurred I can soar up to 170 in all water weight and then have to work my tail off to get it out. That's where the diuretics script and recommendations came from.

Now talking about the milk of mag. Generally speaking if I don't take it, I back up. Almost rather take it and deal with the diarrhea than be bloated and uncomfortable.

The amiitiza was started by my gastro after linzess had failed for me. I have gone on and off the amitiza but have been trending towards going off it again anyhow to get a sense for where I am at this stage in the game.

Which probiotic would you recommend? I have been getting some from Trader JOes and/or GNC, but I am not sure which is better than the other to be quite honest.

To be honest, I would like to go back to milk of mag maybe once a day and not have to need to drink as much water as I do. Rather go back to a liter a day and have my strength back. With that however, what about the low T and the MS. Have you see or heard of that? I am playing around with my injections right now as I just switched myself to every other week. I feel as though the steroid might be causing addition weight gains in my mid section. This is something I don't want as I spent a good amount of time dropping 120 pounds and have no interest in putting any back on.

Thanks
Chris

[Scott1]

Hi Chris,
The probiotic should be a refrigerated variety and ideally have a diverse array of bugs in it. In particular, try to get one with Lactobacillus rhamnosus in it. That’s the strain that is being trialled in a number of therapies including to treat peanut allergies so it obviously has some good properties to moderate inflammation. The one I take has 10 strains in it - https://www.bioceuticals.com.au/product ... aBiotic-45 .

Did your thirst issues and bowel/stomach issues all exist before you started taking the diurectics?

I had a similar (not exactly the same) set of bowel issues prior to a particularly large MS attack back in 2014. My bowel and stomach were a real problem for about a year beforehand. I was bloated, distended, and bilious. My movements were like wet cement that arrived suddenly and were practically uncontrollable. I was able to correct it by using a prolonged course of an antibiotic called Zinnat. It basically attacks gram positive bacteria. No medical advisor will ever bother to go looking for the strain. The medication is Napalm for gut bacteria so you need to rebuild the floral culture throughout and afterwards with a probiotic.

Despite the size of the movements I didn’t clear properly. When I had a colonoscopy to check for polyps and bowel cancer (a precaution due to age, not a health issue) I still needed to be washed out by the surgeon who was surprised I still had impacted waste. I have no issues now.

Your diet is generally good but I would give up gluten (cereals, muffins etc) as it’s inflammatory and switch from low fat to full fat. The low fat is a modified man made product. Read “The great cholesterol myth” by Jonny Bowden and Stephen Sinatra. The problem is more to do with Lp(a) and inflammation than ingested fats. You need to use cholesterol to synthise vitamin D as well.

How did the water retention issues manifest themselves? Did you develop hypertension (elevated blood pressure)? It may not be water at all if it’s in the legs. It may be lymph.

What worries me a little is whether you are expending more energy than you are creating. The unit of energy is ATP which you can’t store but should manufacture on demand. If your supply is less than your demand you will fatigue. That could have a lot to do with the fluid fluctuations.

To remedy that I would try 200-300mg of CoQ10 and 2000 mg of acetyl-l-carnitine morning and night. The book “The Sinatra Solution: Metabolic Cardiology” by Stephen Sinatra gives a lot of detail of why to do that. There is very little difference between cardiac muscle and skeletal muscle so the lessons are applicable. He has borrowed extensively from Prof. Joanne Ingwall’s book “ATP and the Heart” which is much more academically written.

On your diet, you could try what I do. At breakfast I have apple juice, a banana, two boiled eggs and a whole avocado. That gives you a lot of potassium from the fruit and a lot of gentle fibre. For lunch, I have an Asian style soup so it’s a light meal and in the evening I eat anything. I never, ever worry about ingested fat but run away from added sugar. Added sugar is potentially inflammatory and causes weight gain, particularly round the middle and hips.
I have no opinion on Copaxone. I don’t use DMDs so how can I?
The tests I would do are Uric acid (to learn something about how you metabolise purines and hence how well your ATP recycles) and a test for hs-C-reactive protein to look for indicators of inflammation related to narrowing in the arteries.
Good luck and regards,

[chris12453]

Hi Scott,

With regards to the probiotic you linked, I assume you mean this one?

https://www.bioceuticals.com.au/product ... oractiv-45

In particular the Probiotic I use now is a refrigerate type, but I will need to look and see what is in it. I will likely look into the one you linked however.

So my bowel and stomach issues all started in the Summer of 2015 (roughly 6 months before my diagnosis). For the longest time I was able to straighten myself out with a magnesium citrate cocktail and I would go weeks where things would be fine. As time progressed, I started need to use Milk of mag on a more consistent basis and then the help of mini enemas. I did approach my neuro about this and the response was it will take sometime for the bowels to return to "normal". Now with the thirst, that is a bit of a different story. Generally speaking this did not start occurring until July of this year. Just a little history that might be of some interest/potential use. I had my spinal tap in December, 2015. As a result of having the tap performed, a lot of things changed for me. Some examples of what I mean by this is I stopped drinking coffee (lost the taste for it), drank little water (maybe a liter to liter and half), started cutting out my lunch or reducing it to just an orange or yogurt and I lost 10 pounds in about a week and held it off. Now, fast forwarding to July, I started drinking liters (I am talking something like 6-7 liters or more), started to drink coffee again, started feeling extreme fatigure and lack of energy. With all this going on my doctor decided to test my testosterone levels and thats where we came up with a 118 ng/dl which was way below the lowest range of 260 ng/dl.

I will work on changing some things in my diet to see how things change.

The water retention started becoming extremely noticeable when I was not urinating as much as I used to. The classic example I use with my doctors is I used to be able to drink say 3-4 glass of water at a restaurant for example and about an hour later it would all be back out of my system. Again, this all started in the summer months. I was starting to drink coffee again and started with the extreme thirst, but I wasn't draining my system so to speak. I could feel the water in my gut. I didn't necessarily notice too much water in the legs, but I did notice it in my arms and such. The most noticeable was wearing my smartwatch. I typically latch it on the 5th hole, but when I am having one of my water fits, I can't even get to the 5th hole until I drain through the use of diuretics, milk of mag, etc.

I think you are correct with the ATP issue. It is my opinion that I am expending more energy than I am producing. Like I mentioned, I used to be able to ride my bike 3-4 hours before I would be quite tired, but I always prided myself in being able to power up a big climb or power through a technical rock section. Now, I have to work more in a reserve roll and only use that energy when I absolutely need to otherwise I will start to lose stability, coordination, become fatigued and disoriented.

I will look at my last few tests, but I believe we have done C-Reative protein. I don't believe we have done Uric acid though.

After reading your initial response this morning, I made the decision to do a few things and see what happens. I am stopping the amitiza, diruex, the prescription water pill and am only going to use the milk of mag once a day and follow proper dosages. I am going to continue with my probiotic (then switch to the one you suggested), miralax (this I forgot to mention) and stool softener. I am also going to stop my testosterone injections because at this point, they aren't returning strength to me like they did the first time I was on them. I don't feel as though the shots are doing anything.

Thank You
Chris

[Scott1]

Good luck Chris.

It wont be easy and it will feel like you are peeling an onion one layer at a time.

The water issue really could be lymph which is not water at all but made of white blood cells, particularly lymphocytes.

This man gives an excellent overview of the main causes of edema in a very clear fashion and I think is worth watching-



Given the discussion about ATP it is worth noting that 80% is made and recycled in the heart. If that process is slowing then the ejection fraction from the heart will be compromised and the blood circulation slows leading a higher pressure at the venous end of the blood vessel.

The coQ10 and aceytl-l-carnitine should help with that.

Regards,

[RedneckMBA]

Chris, I also have low T. It was around the 300 minimum a year before I was diagnosed. This January when I was diagnosed, my T level was a 3. I was in an episode at the time.

I was prescribed a testosterone gel to apply daily. The stuff was like rubbing on snot. It gave me a few severe outbreaks of zits. Finally, I was tired of always getting boners like a teenager....so I stopped the stuff in July.

Last week my T level tested at 118 like yours. My primary care physician implored me to restart the stuff. Iwe agreed I would reduce the dosage in half. So far so good.

I too drink liters of water, Diet Coke, coffee, and drink mix per day. By I am in the unseasonably warm Gulf Coast of the US and I have been working outside in the mornings when it is cooler. My weight goes all over the place too.

I get tired more quickly too. I summer in Montana now and I was getting tired sooner even in very cool weather.

I believe that the changes described above are the result of the MS. I was diagnosed with an MRI and spinal tap. My symptoms were were also so textbook that I would have probably missed an opportunity if I hadn't been diagnosed with MS. I'm 59 and diagnosed early this year. On Tecfidera.

[lyndacarol]

I am new to the forums and was diagnosed with MS just about a year ago after months of testing. I am 29 years old and an avid runner and hard core mountain bike rider. I wanted to specifically indicate that before jumping into an issue I have been experiencing over the last several months. I typically experience the normal symptoms including but not limited to blurry vision, weakness and fatigue in my lower limbs, IBS-C, soreness, loss of concentration, etc. With this in mind, over the last several months I have been experiencing overall fatigue, extreme thirst (drinking liters and liters of water), water retention and the newest revelation is low Testosterone.

An example of a particular issue I am have is that I am finding that when I was once able to get on my mountain bike for hours, I am being relegated to an hour and half tops and I am toasted. I am also finding that in order to ride my mountain bikes, I need to ride my race bike which is roughly 6 pounds lighter than my trail bike because my body just cannot push that minimal weight differential. I approached my doctor about all this and we did several rounds of blood testing looking at myasthenia gravis, thyroid storm, inadequate or high cortisol levels, diabetes but everything came back normal. We did however find that my Testosterone levels were super low in the range of 118 ng/dl. I was put on a Testosterone supplement injection to bring my levels back up, but believe I am going backwards with my weight at this time.

...

All of my blood work comes back perfect every time with no deviation.

Any thoughts would be appreciated.

Hi, Chris.

Although I am a woman who knows NOTHING about testosterone, I trust that you will allow me to interject one idea: In all your blood work, have you had the "25-hydroxyvitamin D" test?

You are NOT middle-aged and I assume you are NOT Korean, but the following study may be of interest to you:

Serum 25-hydroxyvitamin D levels and testosterone deficiency in middle-aged Korean men: a cross-sectional study (2015)
http://www.ajandrology.com/article.asp? ... aulast=Tak

"A vitamin D deficiency [25(OH)D < 20 ng ml−1 ] was associated with an increased risk of deficiencies of TT [total testosterone].…"

[chris12453]

@RedneckMBA

It's at least good to see that others are experiencing the same symptoms I am. I met with Nuerologist yesterday, but didn't come away with any specific conclusions as this point. He did however write scripts to redo my MRIs (brian, cervical spine and thorasic spine) as well as an MRA (to check on a very small aneurysm). I was going to ask for these anyhow since I met my insurance deductibles, but at this point he thinks it a prudent to take a look for any additional lesions. We are specifically looking for something on the spinal cord though that might be causing a communication breakdown causing slowed or intermittent urination issues hence water retention. The thirst and low T issues were more or less left alone. Seems that since we didn't know what my T levels were before the MS, we actually don't know what is normal for me. The thought here is that my levels were always on the lower side (but that was okay and I was extremely strong) but when coupled with the MS, my body is being stressed and using it up much faster. My nuero also seems to think that my 6-7 days a week of hard cardio in connection with the MS might also be contributing (bare in mind I told him I have been doing the same regiment for the last 7 years now). This is something I will have to wait to see the endocrinologist about at the end of the month.

Some things that did come out of this was to get on Co-enzyme 10 which was also suggested by Scott. We also talked about if the water retention kept up or got worse, we would see a urologist and look into adding Flomax.

@lyndacarol

I have had the 25-hydroxyvitamin D blood test done a few times. The last time being in September where it came back I believe at 36 and was within the test parameter range. On the lower end of the spectrum, but within range according to my primary doctor. I will be redoing all my blood work tomorrow as I need to get it updated for my MRIs. My Nuerologist did add in a muscle blood test (CK it says on the script).

That's where we are at this time. No talk of switching my MS meds at this time. Just more testing and questions popping up.

Chris

[chris12453]

As an update, my neurologist had recommended and had me start on amantadine, but it would seem that I am in the extreme low percentage of people who also have to deal with the constipation side effect. Since I am already dealing with that, I had to stop the drug before it even had a chance to really balance my fatigue.