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mom

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This may be a bit long, but I would like opinions.

In March I startedhaving problems with swallowing- it felt like I had something lodged in my throat, hoarse daily. This is when my husband noticed that my tongue was looking off (large with ridges on the sides). In May I started tripping when I was walking, my tongue started getting tired when I was eating, as did my jaw. I saw a neuro- thought it was ms and ran a bunch of tests (for lyme, lupus, MRI, etc). I started noticing weakness in my right leg and a tightness (I think it is the muscles) on the right side of my head. I then noticed weakness in my right arm and started dropping things.

All my tests came back normal. I was getting muscle aches and the doctor put me on a muscle relaxant. I had read that with ms the cramping can build up muscle to combat the weakness and that taking muscle relaxants can make you loose muscle mass so I measured my legs to keep track- my right leg was 1/2" bigger than my left. The muscle relaxant made me sick (my tremors got horribly worse) so I stopped taking it. I started noticing muscle twitching- popping- mostly in the right side.

I was sent for an emg (horrible experience- the doctor was teaching that day and I heard them talking about an interesting case that was after me- so he spent a total of maybe 2 minutes on me.) It came back normal but while the dr was doing the test he said to the intern- right there, see those 2? If we see anymore then we worry. I don't know what he saw or what that meant.

My left side is now feeling weak (as an aside- 2 doctors noted weakness in clinical exam). My right arm is so tired all the time- like I have been lifting weights. Walking is hard and my legs and feet start aching and dragging. I have slurred speech when I am tired and my dd has told me that I leave out "s" sounds a lot. I choke on liquids daily and it feels like stuff is getting stuck going down. When I get tired chewing I can barely swallow. My right leg now measures 1" smaller than the left in the calf (it looks indented- is that what atrophy looks like?). Neuromuscular doctor said he doesn't think it is ALS but cme back in 6-12 months. I start PT to help build back up strength next month.

Does this sound at all familiar? Could this be ALS? Any other ideas for testing? Maybe a muscle biopsy? I keep hoping things will start getting better.

Thank you!
 

Al

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Hi mom. A 2 minute EMG wouldn't show much I wouldn't think. I'd ask for a referral to an ALS Clinic and see a Neuro that specializes in ALS. They can also rule out any other neurological diseases and there are quite a few of them. Are you in the states or Canada? Where you live can make a difference in what treatment you can seek. AL.
 

mom

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Thank you so much for responding :) I am in the US but I don''t have insurance (I did for the longest time and never needed it and now that I do... lol). I did search and there is an ALS clinic 20 minutes from my house. I just keep thinking that maybe i should wait since the further along whatever is wrong with me gets the more likely it is to show up on tests?!? I have already had a lot of testing done (MRIs, CT scan, blood work, VEP, EEG). One more blood test was mentioned but never persued (I don't remember what it was but I think it was GGT since my ALT and AST have both been elevated and my liver ultrsound and hepatitis panel came back normal- which seemed to concern the neuro). What else might they do at an ALS clinic (besides re-doing the EMG and doing a clinical exam?)?

It is hard to know what to do. It is also hard not knowing what it going on with you. The weakness is really getting to me. I am too young to not be able to open a bottle of coke or have trouble putting the car in gear. I am too young to have trouble pronouncing words or have to wipe drool out of the corner of my mouth.

Thank you again!

In Prayer,
Mom :grin:
 

Al

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I wouldn't get a muscle biopsy until you get a decent EMG and Nerve Conduction study done. I would wait a few months unless the symptoms get a whole lot worse. I'd ask for a referral to the ALS Clinic rather than going back to the other guy.
 

MtPockets

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No Muscle Biopsy Yet

I agree completely with Al. My neurologist spent an hour on my EMG and 30 minutes on the nerve conduction study. I had the biopsy later, because I had other nerve damage from a previous injury, but I would not recommend that for you at this time. You need to go to the ALS clinic if at all possible, and get a GOOD nerve conduction study and emg first.

They can tell a lot from a good study and the biopsy is expensive and hurts. At least it did for me. I hope your tests come back negative. My 2 cents.

God Bless
Big AL
 

cartman

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diagnosing als

mom

the last six months of my life have been spent going from physician to university just to confirm a diagnosis of als. I received every test except a muscle bio. as my als progressed the dianosis became easier. i have some of the same symptoms you have, but you have many i have not experienced. get to an als specialists.
 

mom

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I have been going to Physical Therapy- the doctors wanted to see if it would help with the weakness before proceeding. It has been almost 3 weeks and the physical therapist is not seeing improvement. He has commented on weakness and muscle fatigue. I do the exercises every day and the right side is not improving and the left side is getting worse. He has also noted a lot of tightness in the muscles on my right side and has me doing stretches (these have helped with range of motion but I hve also noticed an increase in muscle cramping). My arms and legs also start shaking when they get tired (which doesn't take much). I just want to know if this sounds familiar to anyone? I contacted my doctor about a referral to the als clinic but haven't heard back yet.

Thank you again! I appreciate having people here to answer questions.
 

MtPockets

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Mom run don't walk or wait for an ALS Clinic

I have limb onset ALS and the more I exercise my muscles the worse it gets. I lose muscle tissue and get more spasms. Someone on here said to think of your muscle as a battery with 100% charge. If you use 10% exercising it never gets charged back up to 100%. Each and every day you lose more of the charge from your muscle battery, until you can use them no more, IF it is ALS.

If you have ALS you may not want to be doing exercising because of the loss of muscle tissue, that is why it is important to get to an ALS clinic as soon as possible.

Therapy made my ALS a lot worse, I don't know about others, but I quit the exercising on my own and stopped going to Therapy. That was my personal choice, I'm not telling you to do the same, only saying the quicker you get to the ALS clinic and see an ALS specialist the better for you. If your doctor is delaying with all this Therapy and stuff, get mean with them if you have to and say I want it NOW, not later. It's your life that is on the line not theirs.

I was passed around from one doctor to another for 2 years before I finally got to the right one to get my DX, I hope they don't do the same to you, and I hope you don't have ALS.

God Bless
Big AL
:-?
 

Al

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Hi mom. I agree with Big AL. You are exercising and it is hurting you. You can actually feel the muscles getting worse. Shakes after exercising is not a good sign. I'd be calling the guy and be demanding the referral. AL.
 
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