Loss of appetite?

[joomka]

hello friends! its been a while and now am back. My MS diagnosis has now been confirmed (as it was a "maybe" for the last few months) and now going on the Pretnisone dose (the super booster course of 1250 mg for five days). Will start that tomorrow. However I have noticed that i am extremely exhausted by the afternoon. Usually I can truck on for the entire day of meetings. But today I've had two meetings, and two con/calls and am absolutely spent by 2pm today.  Also anyone have sudden loss of appetite? I love food and honestly can't even think of having a meal. Right now forcing myself with chopped veggies and hummus to get me through the day but one/two servings is enough. Can't attribute to loss of appetite to drugs (only taking Lyrica right now) so just wanted to ask. Is this something that others are also experiencing in relation to MS overall?

[gypsyflyer]

I have 0 appetite anymore too, am in SPMS...seems as if its common in the last stages of this gd disease .

[Holleez]

Yes I have no appetite feeling really crappie

[yorkieville]

Hi, Alex.

You made an excellent point.

I have other health problems, besides the MS....but my MS is what destroyed my appetite.

I lost a very dear, lifelong friend to cancer, because his doctors were so focused on his heart problems, they didn't listen, when he complained that his back hurt too much to even walk. They kept attributing it to his arthritis.

He had prostate cancer than metastacize to his bones, before they diagnosed it.

So, you are absolutely right, we have to make sure we and our doctors don't attribute everything to our MS.

I'm sorry it took them so long to diagnose your cancer.

Sheila

[HVAC]

Remember everything medically wrong with us is not MS. I lost a lot of weight over two years and kept going back to my GP and saying something is wrong with me I can't eat. My doctors kept blaming it on MS. They kept testing for other causes and when they had no answers they would say it was MS. Finally they found out I had cancer. My cancer almost was missed because I did not push harder for an answer because I thought it must be MS. My GP and Gynecologist were upset with themselves because I had such obvious signs and they said they over looked them because of the MS. You probably do not have cancer but we with MS we can get any other medical condition out there on top of MS.

Alex

[yorkieville]

Absolutely! I think often, of that saying, "You don't appreciate you're health, until it's gone".

[PhyllisPerry]

Yeah ... MS certainly prevents you from taking certain simple pleasures for granted and makes you grateful for what remains.

[yorkieville]

I'm sorry that you have also lost your appetite. Rebif actually improved my appetite, but, I cannot digest much.

I agree, I would love to enjoy eating again.

[PhyllisPerry]

Yes, this is my reality. I have lost 50 pounds in the last year and I started losing before I went on meds (Rebif). The weight loss isn't a big problem in and of itself (yet), but I would give just about anything to be able to enjoy food again. My theory of the cause of this loss of appetite is a loss of some sensation in the tongue. Fingers are numb, toes are numb, tongue is numb, too.

[yorkieville]

Many years ago, one of my Neuro's prescribed Elavil. I developed an intense sugar craving, and gained 10#s.

I mentioned the weight gain to my then, GP, and he laughed and said, "it's the Elavil".

Well, I didn't find it so funny, and I disposed of the Elavil.

I empathize with the way you feel....I wish being underweight was my only problem. (:

[Needhelp16]

My pcp said 2 of the meds I quit taking can cause weight gain.  She's thinking that the weight I'm losing is just the weight that the meds prohibited from losing.  Those were amitriptyline and trazadone.

Last November I had my wedding rings resized because they no longer fit.  They were too small.  Now, they're way too big!  lol...I wish this was the only problem I had to complain about, but at least it's not horrific!

[yorkieville]

Hi, Laura.

I stopped taking UltramER a few months ago, and I noticed my appetite improved to some degree.

I'm glad your appetite is slowly returning.

It may take awhile, but hopefully it will return completely.

Your weight loss, may continue, until you are eating well, again.

Good Luck!

Sheila

[Needhelp16]

I've recently come off of 4 different meds.  Since then my appetite has increased. It's not where it use to be, but better than 1 yr of only eating 1 small meal a day.

Even though my appetite is slowly bouncing back, I am still losing weight without trying.  Fortunately it's weight that needs to be lost anyway!  :)

Laura

[yorkieville]

First, I would like to offer you my deepest condolences on the loss of your husband.

I believe that is the hardest part of marriage.

I *think* between having had an eating disorder, and the devastating loss of your husband, and then, the diagnosis of MS, all combined contributed to your loss of appeptite.

I was allergic to Copaxone, and I have been on Rebif since February, and my appeptite has improved, however, I cannot digest a lot of foods, and if I am stressed or extremely fatigued, I lose my appetite.

May I suggest you schedule a small meal, 4-5 times a day, because it may help you regain your appetite.

It doesn't have to be much-sometimes I just eat half of a serving of Oatmeal with half of a banana sliced into it.

If that doesn't help stimulate your appetite, perhaps your MS Specialist can refer you to a nutritionist.

Sheila

[fantine9]

I stumbled across this thread while Googling "MS and loss of appetite", and I'm so relieved to find out I'm not the only one with appetite issues.  I had been practicing intuitive eating and Health at Every Size after a long, long history of disordered eating (anorexic-type behaviors), and was feeling healthier than I had in years.  Then my husband died, and six months after that I was diagnosed with RRMS.

I'm doing all right, considering the circumstances.  I've been on Copaxone for a little over a year, and just had a second MRI that shows no new lesions and no active demyelinization.  But lately (the last month or two) I just have not felt like eating.  Sometimes it's because I'm too tired to cook, or even take out or delivery seems like too much work.  But my stomach doesn't even growl.  I may not even realize that I haven't eaten all day until I have a headache and/or am shaking from low blood sugar.

For others who've experienced this, is it a phase?  Does it pass in time?  How long did it take for you?

[RazCarver]

Don't know if I really have a true loss of appetite or if I am just to tired to even chew.

Good question
Raz

[joomka]

you all are so amazing. Thank you so much for your immediatecy in your answers! and yes the MS hug is what it is it. Clears  alot of stuff up. Tomorrow night is my last night of the 1250 mg pretnisone and boy am I glad that's over. The bitterness wowza! and because they only make it in 50mgs, well 25 pills at a time is my dose and that is just too much.

next step is the daily/weekly injection therapy. Have to choose one out of the 5 they suggested. Thinking about the daily ones which are not as intense (sort of like a insulin injection) as I can't be doing that  once a week, solid in the tissue one they were also mentioning which feels like a flue shot. So any suggestions on that? Sorry to be asking so many questions. My next doc appt is in about 6 weeks where we discuss what needle therapy I will go with but again, since you guys are so amazing, thought I'd throw it out there for you to as well!. Thank you and I send solid positive vibes back to you as well as have you been sending me such support here..

[yorkieville]

I pray you will not lose as much weight as I lost.

I am 5'2, wiegh 73#s.

Still not on MS meds-going through more testing.

Sheila

[jensequitur]

Hey, Joomka - that sounds like the MS hug to me.  It's intercostal spasms around the ribcage.

[joomka]

and you guys are awesome!

[joomka]

and does anyone get this wierd pain around the upper ribcage while eating? Its like an elastic band around it? tightens?

[emmyvera]

I haven't been diagnosed with MS or anything at this point. All I know is what I don't have. Neuro wants to check out the CNS and do MRI for MS.

I've had the same feelings in the last few weeks. Before I had this "attack" of symptoms a month ago, I ate ate ate. I had very good eating habits to stay healthy and ate 4-5 small meals a day.

Now I am not hungry at all. Maybe once mid morning and then again late afternoon. When am hungry, and then I eat - I'm full fast. It's totally not my character. I love to cook and eat. Now, all that has changed.

[jensequitur]

This is really interesting to me...  I had thought it was my gall bladder causing the loss of appetite, or maybe stress, or depression - but the MS?  Weird.  

I've lost 20 pounds since last October, and I haven't been trying to lose.  I just don't want to eat.  I've had days where I ate one meal, and that was because my husband cooked it.  I wasn't interested in eating, even though my stomach was rumbling.

[HVAC]

I have appetite and digestive problems due to MS. At first I wanted to slim down but now I am losing weight with out trying. Sometimes I am just too tired to eat. I keep Ensure extra protein in the fridge. We got a case at our local discount club. My husband commented on how expensive it was. I reminded him our grocery bill is way down since I am not eating that much.

Like everyone MS effects everyone differently. Some people gain weight, some lose. It is just a freaky disease. My Doctors are closely monitoring my weight. They are also watching my blood work and vitamin levels.

Also not everything is MS it important to remember this and to remind our PCPs. It would be bad to miss another condition because we or our Doctors assume it is MS.

Take care.

Alex

[Holleez]

Hi I have no appetite not trying to lose weight always went to the gym not feeling well at all feeling frustrated   Holly Stewart  ontario

[Needhelp16]

I've lost my appetite as well.  The only time I really eat is at dinner.  I force myself to eat a banana or yogurt in the morning and I might have a few pretzels in the afternoon but that's about it.  I find that if I do eat lunch I won't eat much at all for dinner.  I was like this before I started any ms meds.

Laura