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Hi this is my first time on this forum...
I would really appreciate if someone can help me out here. I do understand that i might not be in the right forum but i am very confused and in a bad situation..
I'm sorry in advance

I'm 27 male

About 3 months ago I had costochondritis. GP told me take advil which i did. About 3 weeks after that I noticed fasiculations in my leg. I didn't think much. I hadn't exercised in the last three weeks so I decided to jog but after the 15th step had to stop cause of severe knee pain. Got very scared. After that went to process of rheumatologist to rule out anything joint related which they did. No famIly history of arthritis either. For last 2 months have had severe muscle loss in leg and now starting to move to upper body. Have basically been bedridden.. MRI ruled out MS my GP said. All blood work has been fine. Was also HIV NEGATIVE. I have all movements and control of muscle except their so weak that I crawl around the house or try to use crutches. I have accepted my fate as something awful since I've always been active and being confined to bed for the last 2 months and being able to walk only few steps a day is not normal I know. I've read a lot of forums and found overwhelming information but nothing quite related to my case and muscle loss so rapidly. My neurologist said EMG looked ok.
I'm sorry again since i know that EMG being ok is a positive sign but i havent walked more then a few steps a day for the last 2 months.

Was wondering if someone has a similar case to mine.

thank you
If your swallowing, neck, arms, and breathing are still normal and strong, it may be Chronic inflammatory polyneuropathy (CIDP). That only effects the legs. That was my original diagnosis. That doesn't mean I'm right, just offering another possibility.
Keep after your doctors to find out what it is. Only they will be able to help you. Good luck to you!
Well, oddly enough there is another poster complaining of severe and rapid muscle loss -healthy1- on the DIHALS forum who has been reassured by a number of posters, including Wright, that this is not in any way typical of ALS. I suggest you read that thread since it may reassure you also. Good luck!
thanks for the replies,
syekick i will definetly talk to my gp about CIDP
Ms. pie i will keep pushing the doctors

Firstly i would like to say That this experience has really changed my outlook on life and taught me about medical and health information i had never known.. and i have utmost respect for everyone who has been diagnosed with and living with mnd/als.. this is something i didnt even know existed prior to 3 months but now see how courageous and mentally strong people living with this disease are..

its quite odd how rapidly i have lost muscle in legs and since the fasciculations in legs are still there i have been concerned..I think also my hip joint and knee pain could be due to flaccidity...its just surprising how 3 months ago i was working a job that required 5 hours of walking 4 days a week to barely being able to walk to the washroom...and being to many doctors and emergency visits do not have an answer..
Not trying to directly compare, but I went from playing tennis multiple times a week to not being able to walk for several months. The stiffness, weakness and resulting pain was incredible. This was around two years ago. High dose steroids eventually got me back on my feet and moving. I'm on long-term treatment and disability at this stage and still recovering. It had nothing to do with ALS.

I guess I've been lucky in that my blood inflammation markers were extremely high at the time and my doctors knew something needed to be done. Thus I was being treated hard and fast while working through figuring out what was / is wrong.

The ALS scare began something over half a year ago when one of my doctors noticed atrophy in my hands. Further testing confirmed clinical weakness and a few other odds and ends. It's progressing slowly and spreading to my feet. I've had a mostly clean EMG and more MRIs than I'd like to count. I don't have ALS.

I guess my advice is that if things are as bad as you say, you need someone willing to work with you and get some treatment. My GP took action until the Rheumatologist got a handle on my case. I started with a Physiotherapist at almost the same time. Aside from forums, what are your plans to get help?
Definitely something is going on .You should go back to your GP. maybe more testing is needed .

Good luck
Ive been working with my GP the last month and half trying to get to the bottom of this. I had my brain MRI in that time which didnt show demylenation and said was normal. Had my lower spine MRI which also showed normal study. Had EMG and Nerve conduction study in this time and neurologist said looked ok. My C reactive protein on may 29 was <5 where the reference is <10. TSH was also in range and also ERY was low. Rheumatoid factor test was negative.
My GP said shes trying to get me to see another rheumatologist to see if it is any kind of chronic inflammatory polyneuropothy and another neurologist who specializes in motor neuron for als/mnd.

Its very stressful my life right now and very restricted...Its hard to walk and my thought is that i have flaccidity in legs so they are not properly tensing and toning when i try to stand up and walk...i think this is the reason and is having impact on my joints

has anyone experienced this with als/mnd?

has anyone found a solution to tense and tone back flaccid muscle/skin around knees and hips or other parts of body?...

i realize it can be caused by disuse/deconditioning but the onset was almost instant as i mentioned in my first post and believe there has to be a deeper underlying cause that needs to be adressed..

this is why i am concerned about als/mnd or another serious condition since this has never happened before..

I try to do some strengthing exercises while sitting or lying cause theres not much other options i have.
At this point i wish i could just get back to walking... Im not even thinking about running or walking long distances much... just a little bit without pain..

if nothing works out im thinking of going to another country in a wheel chair and injecting steroids or starting some treatment.. Because am loosing my wits with this diagnosing process and cant stand being stuck/helpless and no answer.
Hi my other reply didnt get posted not sure why..

In the last month and half Ive been working with my GP to try to get some answers. Since brain MRI was ok and spine and neurob said emg/ nerve cond study was ok also I am confused. My arthritis tests like ANA ESR and CKR were also ok along with electrolyte test.

I dont kno what to think of this. I wish I could find a solution and start treatment

I was wondering if als/mnd can cause flaccid muscle/skin in legs. I think thats the reason for my leg weakness and since there's no resistance and tone they are hurting knee and hip joint also.

I have been stuck in house without knowing what's going on and am trying to get answers but it's just not being easy

I have another rheumatologist appointment soon and also neurologist so all can do is wait. My Gp is trying but said she's also confused. I wish god would just let me walk a little again or give me answer
There could be a whole host of potential causes for your issues. Going to another country for roids isn't likely the answer.

If you seriously can't walk--get a wheelchair and see a specialist about what is going on. ALS just doesn't have a sudden onset like you're describing. With muscle weakness and 'flaccid' muscles, you'd have LMN issues going on which would show on EMG. It's not ALS--but is obviously something.
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