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Old 06-24-2012, 07:32 PM   #1
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Unhappy Losing muscle mass in tongue, tonsils normal?

Hello everyone, I'm a 27m have gone to 4 specialists now (Kaiser Permanente), they couldn't find out why I am losing muscle mass everywhere

Some facts:
1. Neurologist said it's not ALS, muscles are strong but soft, no tone
2. I feel like the padding has gone. I can feel my bones and it hurts when you rest your arms on a table.
3. It has affected my facial muscles, muscles around my eyes, no more space between skin and eyeballs like it used to.
4. Sides of tongue look like someone took a chunk of bite off them. Tonsils are thin. The opening behind tonsils have atrophied.


Lab findings:
  • slight proteinuria (protein in urine) but not high enough for a kidney disease
  • very low Vit D
  • normal Cushing's test but high 24hr urine Free Cortisol (endo says could be stress)
  • Testosterone to be checked again
  • Checked for a number of things like arthritis, HIV, Hepa ABC, Antibodies, ETC, abdominal CT "normal", ultrasound fatty liver
  • I kept gaining fat mass despite being a Zone dieter (I do not eat enough even in a day's worth, no sweet tooth)
  • High BP and Rapid heart rate since 2008 = doctors said due to anxiety, Last EKG normal

Neurologist said it could be disuse atrophy. Can disuse atrophy affect the tongue too?? :'( Help me please I cannot die yet I have to buy my mother a house first I promised her that :'(

 
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Old 08-13-2012, 03:21 AM   #2
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Re: Losing muscle mass in tongue, tonsils normal?

Hello, I am new here.32 yo female. currently don't have a diagnosis either, however i also have diffuse atrophy and all over, every muscle is just weak.. I have obvious hand atrophy and tongue atrophy. Three Emg's and many neuros all agree - not MND/als, thank goodness! Anyhow I saw your post and it was interesting to me, as I have had heart involvment since this started too- high heart rate, a lot of palpitations etc. I have eyebrow and a little eyelid ptosis as well and swallowing difficulty. I was curious if you have found any answers with yourself, or what they may be thinking? I have had most of the testing done with the exception of a muscle biopsy, Hope you have found some answers!

 
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Old 12-28-2012, 10:10 AM   #3
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Re: Losing muscle mass in tongue, tonsils normal?

HI!! :'-( You made me tear up. PLEASE LET US HELP EACH OTHER! I feel like I am going to die next year as I am still losing muscle in my mouth and limbs. Also there is burning pain. Any update?? Please keep in touch

 
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Old 12-28-2012, 12:34 PM   #4
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Re: Losing muscle mass in tongue, tonsils normal?

I'm so sorry your still struggling.. So am I... any answers or changes since your last post?? My atrophy seems to have slowed down since IVIG.... which i get every 2 weeks.. parts of me have improved greatly, while other parts seem to be progressing... It is a struggle to keep my weight up, as I also have GI components to this too.. and visual ones .. The thing that is freaking me out the most right now is that at night I feel like I'm not breathing very deeply.. I do wake up with a mild headache - not bad, but it's there, So i know I need to go do a sleep study, but i'm afraid..
What treatments have you tried? What are they telling you? do they think its autoimmune or something? My tongue sounds exactly like yours.. I had another EMG/NCV a month or so ago, and it was normal - they said no ALS for sure... but i still fear that or something terminal. I Have two small children under 3 , I am terrified..
Have they done muscle biopsies etc? Are you still able to work, and do everything, or do you just have bad muscle fatigue? Can you swallow foods and speak ok? When my sypmptoms are bad, I can barely swallow food or water, have slurred speech, breathing and walking and well everything is really hard... ugh...

 
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Old 12-28-2012, 01:46 PM   #5
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Re: Losing muscle mass in tongue, tonsils normal?

Quote:
Originally Posted by bny806 View Post
I'm so sorry your still struggling.. So am I... any answers or changes since your last post?? My atrophy seems to have slowed down since IVIG.... which i get every 2 weeks.. parts of me have improved greatly, while other parts seem to be progressing... It is a struggle to keep my weight up, as I also have GI components to this too.. and visual ones .. The thing that is freaking me out the most right now is that at night I feel like I'm not breathing very deeply.. I do wake up with a mild headache - not bad, but it's there, So i know I need to go do a sleep study, but i'm afraid..
What treatments have you tried? What are they telling you? do they think its autoimmune or something? My tongue sounds exactly like yours.. I had another EMG/NCV a month or so ago, and it was normal - they said no ALS for sure... but i still fear that or something terminal. I Have two small children under 3 , I am terrified..
Have they done muscle biopsies etc? Are you still able to work, and do everything, or do you just have bad muscle fatigue? Can you swallow foods and speak ok? When my sypmptoms are bad, I can barely swallow food or water, have slurred speech, breathing and walking and well everything is really hard... ugh...
How did you get the IVIG? What is their diagnosis for you? I am so very happy and relieved for you

Last edited by Administrator; 12-28-2012 at 02:46 PM.

 
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Old 12-29-2012, 01:00 AM   #6
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Re: Losing muscle mass in tongue, tonsils normal?

They don't have a firm diagnosis.. it was more that I was declining so fast they thought they would try it.. and they thought I sounded like Guillian Barre/CIDP, however my emgs were all normal. It seemed to really work, especially the 2nd round.. however I also feel like I am slowly progressing at the same time.. it waxes and wanes quite a bit... THey also question at times if it is something like myasthenia - I would defintely fit the bill for Musk Myasthenia - have they tested you for that?? It will have similar tongue changes as I have "triple Furrowed" /atrophied tongue and can have muscle atrophy too.. but i was negative for that..
Have you had emgs? Do they tell you what they think it is?? Do you have slurred speech or atrophy??
I have a sibling that is starting to have issues as well (which is a reason that dystrophies make me even more nervous).. I have GI and cardiac involvement too.. also I had very bad scoliosis as a kid, requiring surgery.. So, I am still a mystery.. and I'm terrified I'm going the wrong direction.. How are you? What are your dr's saying at this point?

 
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Old 12-29-2012, 01:07 AM   #7
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Re: Losing muscle mass in tongue, tonsils normal?

Hi, I am glad I am able to communicate with you here. I am currently insured under Kaiser and the doctors I have are either not very keen on finding out what it is or simply disinterested.

I then ordered an outside test for Lyme. It came out positive but I still don't know if that is what's causing it. My neck circumference has lost an inch and a half. My atrophy except for the back of the mouth is very evenly distributed that you would not notice it initially but before/after pictures would make them distinct. I get the burning pains on my palms, throat, soles of the feet, etc.

I would not slur but I have regularly felt a choking sensation. The muscles around my eyes are virtually gone. My hair has been falling out since 2006, I don't know if this was all due to me taking a low dose anastrozole last year but I first noticed the rapid wasting last year only.

What do I do? ( Im thinking of asking the doctor about the treatment you are having.

I lookeed up IVIG. Is it really that expensive?! 10-15K per session? I lost all my savings already from this

 
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Old 12-29-2012, 02:28 AM   #8
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Re: Losing muscle mass in tongue, tonsils normal?

I hear ya ... I was told it could be "stress" at first... I saw about 4 or 5 different neuros before I ended up at the university ALS center.. They all told me along the way it sounded like GBS/CIDP and IVIG if it got bad enough.. I didn't have any atrophy initially.. but after about 6 or so months of the symptoms it became more apparent... especially on my tongue.. I actually felt a "bubble" on the underside of my tongue, and it was the start of it almost rolling over/thickening around the edges.. I have equally distributed atrophy with the exception of my right hand- thenar is a little worse than the left and right calf a more than the left. .My facial atrophy is symmetric as well.. I have temporal wasting - I looked in the mirror when I realized and just looked awful, though I had lost A TON of weight since I was just so sick with the stomach stuff and weakness.. I am pretty stabilized now on that end.
Do your eyes/eyebrows droop/ptosis? Do you have any visual changes? I have all of those things.. heat especially makes it worse.. It's like my muscles including my face melt with the heat.. when my symptoms were at the worst. i would get out of the shower and could barely move a muscle...

How are your reflexes? Mine are brisk - but they have been all of my life, so not sure if they are changed.. Do you have any GI or heart issues too?

Yes, IVIG is really that expensive.... From what I have read, most dr's will do a trial if your weak enough etc.. it usually consists of a loading dose and 3 more treatments.. and they go from there if it works.. Every dr is different of course though, since IVIG has it's risks too.. (i got pretty bad aspetic meningitis from it).

As far as the burning sensations- I have that too.. sometimes it seems like it is more pronounced when I am using my limbs.. when I type, especially if I have a shirt against my arm, it burns and gets numb even more.. Does that sound like yourself??

Have they done any treatment on you? do they think it's a dystrophy? Do you have muscle twitching? I do.. I fear ALS the most..

 
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Old 12-31-2012, 03:38 PM   #9
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Re: Losing muscle mass in tongue, tonsils normal?

Thank you bny for the quick response. I'm sorry for being so late. I hope we can keep this discussion active. Can I ask if you are not actively doing exercise or muscle training? I ask because I also consider that it could be also one reason for me. I was prescribed with Gabapentin for the nerve pain but the side effect is weight gain which I instantly felt. I've gained 60 lbs then I lost 19 pounds as of today since last October, BUT my fat mass seems to be the same as I keep on losing muscle so I think it's very likely the lost 19 lbs are purely muscle :'(

I have not been consistently exercising for fear of losing even more but I know it actually can maintain weight. (1) DO you think it's because of lack of exercise on your part? My reflexes are all normal since the last test. The neuro said it could be disuse atrophy which is the lack of exercise.

I do have a mild ptosis on my left eye from a pink eye situation I had in Dec 2005, which has caused a scarring in my cornea, not sure how this is related, although the pink eye is quite suspect, that could be linked to Lyme disease, which then could be related to all this muscle wasting.

I do have twitching, that's why I had to have ALS ruled out first. They say it's not ALS since there's no weakness and EMG test was normal.

(2) Do you have FOAMY URINE? I do :'( The proteinuria tests are normal but the creatine output is a little on the upper limit side.

(3) High BP? Palpitations? I have both and I'm only 27. It just sucks I hope to survive all this. Having no diagnosis is the worst.

(4) What are your doctors doing to you now?

 
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Old 01-01-2013, 03:08 AM   #10
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Re: Losing muscle mass in tongue, tonsils normal?

I hear ya as far as the weight goes... I lost a ton of weight initially- though I was having crazy GI symptoms.. and now I will have flares of weakness and GI symptoms that go together and can drop 5-8lbs within a few days.. but all in all, i also feel like I lost muscle mass and have replaced it with fat, though I am still thin.. I take Lyrica, and it has the side effect of weight gain as well, but for me it was a wanted side effect.
'
I don't work out.. well besides chasing my two kids around and a demanding full time job as well... Since they don't know what I have, I am afraid to work out and "use up" the muscle I do have.. 18 months ago if i walked around for thirty minutes or so, or just simply stood up, I would be SOOOO sore the next several days ,up to a week afterwards that I could barely walk.. it felt like I ran a marathon, and all I had done is normal everyday stuff.. I was super active before all of this started... so it was quite a change... So, now I just try to preserve my muscle function, as I have so many things I need to be doing, I can't afford to be sore or weak.. I'll never forget when one of the neuros did strength testing on me (the only neuro that really did a GOOD exam.. the others did such simple strength tests, it was really a joke).. but my right arm/hand fatigued with his force after a bit.. and I couldnt' even use that arm for a good day or two afterwards!!! I miss working out, and tear up at the thought of skiing, running, surfing etc.. it was such a big part of my life before.

1. As far as lack of exercise.. that's defintely not the case with me.. as I was actually running/jogging, chasing around kids etc when this hit me and I suddenly couldn't even hold a fork, phone, kids etc.. In my opinion even people who just sit there all day who are healthy shouldnt' have obvious muscle wasting.. As even being "lazy" you use your muscles.. now if someone is paralyzed and that muscle doesn't move at all for a while, then yes.. anything is possible though, so it's hard to say.. Do you feel weak??

2. No foamy urine here.. Never heard of that being a problem for people - do you know if that could signify something?

3. I have had crazy tachycardia with this.. I used to have a resting heart rate in the 60s (as I was very athletic).. and then when this hit, my RESTING heart rate was 140's!!!! I felt like I was gonna kill over at any second for MONTHS!! when they did autonomic testing on me, my heart rate went into the 170's! scary.. I also get palpitations (more at the beginning of all of this than now).. but I still get them daily, more than before.. I am 32 years old now.

4. now we are just continuing IVIG.. and I get additional testing here and there.. I think a sleep study and a holter monitor is my next adventure.. I am just so sick of dr's.. I feel like i spent SOOO much time at dr's last year, and no one could ever figure anything out.. so i think to myself, do I want to go spend the time, money etc seeing someone who will just say "huh, who knows"?

Question for you.. When I get bruises my muscles hurt for months in that area.... does this happen to you?? It's so strange, the appearance of the bruise is long gone, but the muscle continues to have a big knot and hurt every single time I get a bruise.. for weeks and weeks it lasts.

Did you test positive for Lyme???? I have most of the symptoms, but my western blot was negative for it.. including my CSF lyme tests..I used to hike in the northeast and had many tick bites... so wouldn't be shocked if I had it.. though from what i've read, chronic lyme is more of an autoimmune process, and things like IVIG are maybe better than the antibiotics- but who knows,, seems like they just don't know a lot about chronic lyme..

I hear ya.. i am pretty sure whatever this is that I have is gonna be the end of me in the coming years... I just feel so sick all the time.. I feel like no one is going to figure it out, and i'll just drop one day.. I try to shake the feeling, but I do think this monster will win in the end... I sure pray I"m wrong, and decades from now will look back at these years and think... man that was tough, but glad it's in my past! I can dream right

 
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Old 05-21-2013, 01:34 PM   #11
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Re: Losing muscle mass in tongue, tonsils normal?

Bunny are you still there? I hope you are fine. My neck is now 15 inches around, normal is 17 inches My tongue has atrophies so much as well as the back of my throat. It burns so much as I type.

Just had another EMG a few days ago and it turned out "normal" again. Could this be Lyme or more recently I read about "Urea Cycle Disorder"

Please let me know of your status now. I am slowly deteriorating. My palms are so scalloped

 
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Old 05-21-2013, 07:00 PM   #12
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Re: Losing muscle mass in tongue, tonsils normal?

Hi!
I am still here, and I am so sorry that you aren't doing well.. it is all sooo frustrating!!! I am doing ok.. parts of me are much better (my swallowing/speech hips and hands etc), but my trunk has become substaintially weaker.. I don't understand how one part of me can seem to get better, while other parts decline.

I don't feel like I"m breathing well at night - I have a sleep study coming up in June.. I"ve been too terrified to actually get tested, as I know that there is an issue there, and I just am afraid if I have to do Bipap, that means something is seriously wrong and that worries me.. My abs are so weak I can't even suck in my stomach anymore (something I just always did out of reflex I guess all my life).. my stomach muscles feel like they are getting ripped away from my ribs.. and just my whole trunk is super weak..

They tested my PFT's again at the clinic last week and they were even better this time.. (2 weeks post IVIG).. but something is still very wrong with my core muscles.. My right foot is wasted away worse too and looks kind of like a skeleton, its so unsettling. and my ribs and collar bones stick out so grossly, while my stomach sticks out out of weakness Not how one wants to look or feel after having a couple of kids! I too have lost weight and am frantically trying to replace it .. though it just gets replaced with squishy fat instead of muscle..

I haven't read about urea cycle disorder, I"ll have to look that one up.. I hear a lot about Lyme.. I feel like my symptoms could fit perfectly, but I also wonder how much of that is legit.. I feel like everyone who gets tested at Igenex is diagnosed with lyme... I just don't know what to think about it, or if it's something we should try.. I am high risk as I hiked in the new england mountains quite a bit.

I can't remember, have you had a muscle biopsy?? I feel like this is one of the major tests I haven't had - I also feel like mitochondrial disease could really fit my picture.. that or a muscular dystrophy.. I remember when I was pregnant my stomach muscles actually tore a bit with my stomach stretching.. My dr told me it was due to weak ab muscles (well i had a six pack at the beginning of my pregnancy, so I didnt' have weak muscles from lack of working out or anything).. My neuro doesn't seem to help me out much, so I am thinking of pushing the rheumatologist for a muscle biopsy - this could show mitochondrial diseases as well as other things.. I am scared this is going to get me in the near future.. the trunk muscle weakness is so awful...

Did they test you for Musk Myasthenia?

 
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Old 07-23-2013, 07:47 PM   #13
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Re: Losing muscle mass in tongue, tonsils normal?

Have you had the genetic test for myotonic dystrophy type 2? I have a mild percussion myotonia and muscle weakness. Do they suspect that in you? Has it been ruled out? We are similar.

Quote:
Originally Posted by bny806 View Post
Hi!
I am still here, and I am so sorry that you aren't doing well.. it is all sooo frustrating!!! I am doing ok.. parts of me are much better (my swallowing/speech hips and hands etc), but my trunk has become substaintially weaker.. I don't understand how one part of me can seem to get better, while other parts decline.

I don't feel like I"m breathing well at night - I have a sleep study coming up in June.. I"ve been too terrified to actually get tested, as I know that there is an issue there, and I just am afraid if I have to do Bipap, that means something is seriously wrong and that worries me.. My abs are so weak I can't even suck in my stomach anymore (something I just always did out of reflex I guess all my life).. my stomach muscles feel like they are getting ripped away from my ribs.. and just my whole trunk is super weak..

They tested my PFT's again at the clinic last week and they were even better this time.. (2 weeks post IVIG).. but something is still very wrong with my core muscles.. My right foot is wasted away worse too and looks kind of like a skeleton, its so unsettling. and my ribs and collar bones stick out so grossly, while my stomach sticks out out of weakness Not how one wants to look or feel after having a couple of kids! I too have lost weight and am frantically trying to replace it .. though it just gets replaced with squishy fat instead of muscle..

I haven't read about urea cycle disorder, I"ll have to look that one up.. I hear a lot about Lyme.. I feel like my symptoms could fit perfectly, but I also wonder how much of that is legit.. I feel like everyone who gets tested at Igenex is diagnosed with lyme... I just don't know what to think about it, or if it's something we should try.. I am high risk as I hiked in the new england mountains quite a bit.

I can't remember, have you had a muscle biopsy?? I feel like this is one of the major tests I haven't had - I also feel like mitochondrial disease could really fit my picture.. that or a muscular dystrophy.. I remember when I was pregnant my stomach muscles actually tore a bit with my stomach stretching.. My dr told me it was due to weak ab muscles (well i had a six pack at the beginning of my pregnancy, so I didnt' have weak muscles from lack of working out or anything).. My neuro doesn't seem to help me out much, so I am thinking of pushing the rheumatologist for a muscle biopsy - this could show mitochondrial diseases as well as other things.. I am scared this is going to get me in the near future.. the trunk muscle weakness is so awful...

Did they test you for Musk Myasthenia?

 
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Old 07-24-2013, 09:33 AM   #14
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Re: Losing muscle mass in tongue, tonsils normal?

They havent' done that test, or a muscle biopsy either... My neuro is pretty close minded it seems.. I have read about the symptoms of it and it does seem a good fit - I have multiple systems involved (heart, intestines, droopy eyelids, triple furrowed tongue etc)... Did your emg's show myotonic discharges? My emgs have been normal... and with my symptoms I would think something would show up on their.. i have mild diffuse muscle atrophy..
My sibling who also has crohns has similar facial features as me.. intestinal issues (obviously with crohns) diffuse muscle wasting and bad muscle cramping.. which makes me wonder if it's something genetic going on with the both of us - we both noticed symptoms around 30 years old.

Does your tongue look a little funny? With ridges on both sides and slightly in the middle? Does heat, hormones or anything like that effect you? thank you so much for your response!

 
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Old 07-24-2013, 09:36 AM   #15
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Re: Losing muscle mass in tongue, tonsils normal?

I also meant to add- I don't have the muscle locking/myotonia when I simply shake someones hand.. but if I clean something (with my hand on a sponge, towel in a certain position for a while), or if i move my feet inward (bending at the ankle) my hands and feet get "stuck" that way for a few seconds.. I don't have a muscle cramp per se, but it just gets stuck.. I noticed that first 4 or 5years ago... so if that is connected, i've had symptoms for that long..

 
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