Hi, Sorry, it kind of seems like I'm asking more than my fair share of questions lately.
I've lost about 15 lbs unintentionally in about the last 8 months. It's not that much, but I didn't weigh a lot to begin with, and now I'm nearing the century mark. I'm going back to speak to my GI doctor again about it - just in case it's related to something in that realm.
However, I mentioned it to one of my physcial therapists and she suggested that she thinks it may be related to muscle wasting. My other physical therapist had also mentioned that she's noticed that my legs and hips are weaker than when I first started going to her in early Dec.
Has anyone ever heard of weight loss in anyone with MS associated with muscle atrophy or wasting? I am a little concerned about it. I've been on this forum for maybe two years and I don't think I remember anyone ever discussing this.
Hi Kelly, I know absolutely nothing abut muscel wasting but I do know that there are never too many questions asked here. Keep 'em coming and hopefully someone will have suggestions for you about the concept of muscle atrophy and MS.
I have muscle atrophy in my R extremities, but I haven't lost a gram! :-O
There are two types of muscle atrophy. The first type is disuse atrophy which occurs from a lack of physical exercise. In most people, muscle atrophy is caused by not using the muscles enough. People with sedentary jobs, medical conditions that limit their movement, or decreased activity levels can lose muscle tone and develop atrophy. Those who are bedridden can have significant muscle wasting. This type of atrophy can usually be reversed through exercise and/or better nutrition.
The second and most severe type of muscle atrophy is neurogenic atrophy. It occurs when there is an injury to, or disease of a nerve such as MS. This type of muscle atrophy tends to occur more suddenly than disuse atrophy. This type of atrophy can't usually be reversed since there is actual physical damage to the nerve. Neuromuscular Electrical Stimulation (NMES) has been used as a form of physical therapy that applies electrical muscle stimulation via small electrical impulses to nerves and muscles in an effort to cause involuntary muscle contractions. The electrical impulses are sent by electrodes placed on your skin over the muscle or muscles.
This lifted from http://my-ms.org/atrophy.aspx
Just a thought...I dunno about weight loss, though. definitely talk to your GI doc.
I don't know about muscle loss as it relates to MS specifically, but I do know quite a bit about maintaining/building muscle in general.
There are some definite challenges to this issue inherent in any chronic illness. The MS makes it more likely that you are not utilizing the muscle you DO have to the point that your body recognizes it as being a highly valued part of your body. In this case, the cliche "If you don't use it, you lose it" is absolutely true. I am admittedly new to this disease and not even officially Dx, but I am starting to feel some of the reasons that a person w/ MS is less likely to "use it". Mild to moderate exercise for 30 minutes is giving me the heavy-legs feeling that I had previously only experienced after something like a 30 mile bike ride on an antique, fat tire cruiser. I have a Physical Therapist in the family and he told me to try breaking my workout up into more sessions. I have only been trying this method for about 10 days, but I've upped my intensity to almost normal for 10 minutes at a time 4x a day and my legs are feeling much more normal. You might speak to your PT about if this method would be helpful for you and what duration and intensity would be right for you to aim for.
Another issue that stands out for me is that if you have a GI doctor you must be having enough issues, that I'm guessing protein is not the most appealing nutrient to you. Protein is the hardest to digest of the three types of calories, (so it is far less appealing when suffering any sort of illness from a cold to GI issues) and also the one that our body can't really effectively store for future use, except as our muscle tissue, which requires enough exercise to let our bodies get the message that we NEED more muscle. In other words, it takes some work on our part to get protein stored as muscle, it is not automatic.
Have you ever had your body composition measured? This can be done by being weighed while suspended in water, with calipers and a scale, or there are electronic scales that do this as well. I'm sure your PT could help you determine how many pounds of muscle you currently have. It would be very helpful to know how much muscle you have now, both to be better able to determine if any future weight fluctuations involve your muscle and to know how much protein you should be eating in a day to maintain the muscle you do have. The general rule of thumb is that you should eat 2 grams of protein by the nutritional data (not 2 grams of tofu or meat, etc.) daily to maintain each pound of muscle. thedailyplate.com is very helpful in keeping track of your nutrient intake. The free version is set to the USDA recommendations, which is absolutely not the ratios used by people trying to build and maintain muscle, but if you pay for a gold membership you can set custom ratios so you don't have to figure it manually everyday.
As I said, my knowledge in this area is general, as opposed to knowing how to tailor it to someone with health issues, so I don't know if you would be able to add foods rich in proteolytic enzymes, also called proteases to your diet. Proteases are a group of enzymes that help break down and assimilate protein in the digestive system. Although protease is produced naturally by the body, food sources also contain these enzymes. People with protolytic enzyme deficiencies can sometimes use these foods to boost protease levels and help their bodies more efficiently use proteins for energy and to build or maintain muscle. The list of fruits given on a box of jello as "do not add or gelatin will not set" are all high in proteolytic enzymes and is in fact why the jello will not set up: fresh or frozen pineapple, kiwi, ginger root, papaya, figs, and guava. Another good source is whole grains, and especially sourdough whole grain. If you and your GI doctor think your digestive tract can handle these foods, it may be worth a try to add them to your diet.
I have been concerned about the changes in my muscle tone and wondered if it was atrophy. I have in fact gained weight due to different eating choices in trying to compensate for how I've felt this last year. I have hypoglycemia and the tremor's made me feel like that wasn't controlled. I ate to compensate.
In really looking at it, I don't think it's wasting. It's significant loss in muscle tone. When I try to do what I use to do, my symptoms flared and I stopped doing whatever it was (yard work, exercise, etc.) This has caused my muscles to become more weak...and lose even more tone.
Is it possible you may have a thyroid embalance? I think sometimes that can cause loss of weight and muscle weakness as well. Please keep us informed. I hope it's easy to pin point what might cause this ---
I readily concur with GG about weight loss and wasting of muscles.
What I want to address is those 15lbs over 8 months. I would think for that amount of weight loss to be from muscle wasting it would be very visible on you assuming that only certain muscles are being effected by your MS.
While you have not intentionally lost this weight it is also feasible that if you have not been feeling that great it could have caused you to eat less than normal resulting in this weight loss. For example in the last 3 months I have lost 10lbs. just by a very minor change in my diet.
I have left sided muscle atrophy due to MS. My arms worse than my lower extremities. My PT is of the belief it's neurogenic (MS) in origin. Therefore I work like a bad woman on maintaining what I do have especially my Achilles tendon and anterior tibilias to prevent foot drop.
My daily routine is a set of stretches and depending on how I feel a routine of stretches with Thera-Band (the colored bands of rubber) in addition to that; I have a stretch board made by my husband, a recumbent bike, a physical therapy ball for various exercises and "body building" (muscle) with the Thera-Band.
Too bad haven't had the weight loss, permanent it that is. Every time I loss it ,it finds it's way back something akin to Hansel and Gretel leaving a trail of clues.
Kelly, you have been under SO much stress, my GUESS and only a guess would be your MS and all of your worry over family members and their illnesses. One of your pics showed you walking (hiking with, I think) your dog. If you have stopped doing a regular upgraded exercise routine, it could be as simple as that.
Please do address this with your doctors and revisit the PT plan so they can give you specific exercises to fit YOUR body and daily routine.
Hi Kelly have your Doctors ever said anything to you about CMT. (Charcot Marie Tooth Syndrome) named after the 3 doctors that discovered this. It is the most common neurological disorder. There are many different types of this disorder but all have symptoms of muscle wasting. I have CMT. and have muscle wasting in my lower limbs and drop foot among other things. Might be something to check out.
Lisa, thanks for posting the different types of atrophy descriptions related to MS. It's very helpful to know these things. The Neuromuscular Electrical Stimulation (NMES) sounds familiar, although I have never had it.
Valerie, thank you for the extensive response. I know that must have taken some time to do. Before my MS, I used to do P90X 6 days a week at least an hour a day plus a bunch of other activities. That was over 3 yrs ago when I stopped. I've never had my body composition measured in the way that you are saying. However, I've always been very aware of my daily protein intake - because of being a former athlete and becaue of being a pesco-vegetarian (vegetarian that also eats seafood).
I actually have no GI issues (that I know of), even though I have a GI doctor. I just went to her because my PCP sent me to her because most of the time, I am unable to use the restroom on my own. She sent me to her, so she could make sure everything was OK. The GI doctor found that my muscles are too weak to go - 0 out of 5 strength in that region.
Sidesteps, I know what you are saying, whenever I try to do anything really physical, my feet and lower legs go numb & tingling and my legs feel heavy and somewhat uncoordinated. They always check my thyroid, so I know it's not that.
Dennis, thanks for your input. You are right - the 15 lbs does show on me, since I only weigh about 102 lbs now. I can very definitely see it in my thighs, especially the inner part and the upper back part of them and around that area in the sides of my hips & butt. Other people have noticed it too - even ones that see me every day. My jeans/pants are really baggy in those areas and my waist. I eat all the time and I feel like I'm starving.
Thank you Ren, yes, as you know, my stress level is pretty much thru the roof right now with all that's going on. It would be nice if that's all that it is that's causing me to lose weight/muscle. Who knows...
My physical therapists have given me an extensive list of things I need to do - involving bands, the big gigantic ball that we have, and all sorts of other things. It is really difficult to get it all in right now - I probably have 20 hand-outs from one of them with things that I need to do. And me & my partner still walk Dakota every night.
Hi Kat, and welcome to the forum. I don't think I've seen you on here before. Sorry if I've missed you. Thank you for sharing. I have not heard of Charcot Marie Tooth Syndrome. I will need to do more research on it. I do have a diagnosis of MS. I'm not sure if this syndrome causes cognitive / memory issues? I have quite a bit of issues in that area, besides the other stuff. If it doesn't then, I'd think that I could pretty much rule it out (it has taken me an hour and a half now to type all of this up, and I keep highlighting it and right click - copy, so I don't accidentally do something to lose it all and have to start all over again).
Hi Kelly. For you, a 15 pound loss represents more than 10% of your total body weight. I'm sure I don't need to tell you this isn't a good thing when you aren't trying to lose.
I'd keep on these docs to investigate what's going on. You mentioned recently that you tend to eliminate too frequently (even though inertia is a problem with the muscle weakness). I wonder if you are absorbing the nutrients you take in.
Of course there is also the issue of family history. I'm thinking of your brother now. Did he ever get a firm answer about the cause of his weight loss? I understand your concern and wish I had more to offer.
I'm sure going to hold out lots of good thoughts for you about discovering what you can do to stop and REVERSE this weight loss trend. You are one of several members of our forum family who need a break in a BIG way.
Hi Mary, Thanks for your response and hugs. :-)
I guess, the only thing that I can say is that at least it wasn't a rapid weight loss. However, I do recognize that it's not good to lose that much weight - especially when I'm small to begin with.
I agree about my family history. When my mom passed, she was just slowly going down and only weighed 58lbs at her death.
My older brother has lost about 70 lbs in about a year. He was coughing up blood & night sweats at night. Now he's coughing up blood all day long and just looks so drained. He had tested positive twice for the rare cancer my mom had (carcinoid syndrome). Then he tested negative. So, the stupid oncologist said he doesn't have it, even though the test is know to have false negatives & positives. He's now seeing a pulmonologist & waiting for a CT scan approval then a bronchoscope (sp?). Thank you for asking about him.
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