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awieleba

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HI to you all!

I normally post on the other als site. I just wanted to ask if any of you with pls get minor twitching? I seem to have alot upper motor nuron symptoms (brisk refelexes, tight muscles that ache,fatigue,throat issue-hoarseness) and have 2 clean emgs (both were with in 1 month). I am going to the als clinic in my town.

I feel that my muscles have shrunk so to speak. I think a may have a slight atrophy or thinning around my left ankle.

Anyway, something is wrong and I have been fearing als, but I thought maybe pls with my clean emg and some upper neuron signs.

what exaclty are lower nueron signs, i think I have those too. not sure.

thank you all sooo much!

April

ps~I have no muscle cramping as of yet. I have been dealing with this for about 6-8 months but was not really noticing prior to that, I was pregnant and wrote everything off to that.
 

sral

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I'm so sorry to hear that you are going through this, especially with a new infant/child.

A negative EMG is a very good sign that this may be PLS or something else. Lower motor neuron damage is captured through an EMG and if yours is negative then you do not have lower neuron damage.

Stay positive!
 

awieleba

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sral~

thank you for the reply! it is hard with a young infant but I also have 2 little boys! The kids help me stay strong and positve.

these muscle disorders can be confusing and take many shapes.

I have read some of your posts and I hope your mom is doing well!

take care,

april
 

sral

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All the best April.

I too have young children and I know how physically demanding this is. But I can also understand how they keep you positive.

My prayers are with you.
 

Geo

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Its very Very unusual to have 2 EMGs with in a Month . Why would a Doc. order another one within a month of the last ,this is highly unusual . They usually watch it for a year then another one ,this is to watch for progression of any kind,I.E nerve loss This is a very expensive Test and i would wander if an Insurance Co. wouldnt question this .
 

awieleba

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geo,

I went to the local neuro and she did the first. then I felt worse and I wanted to go to a neuromusular specialist, so I did. I went to the best instead of wasting my time with the local.

I have blue cross and believe me it costs us alot as we are self employed! I am glad that I have it now. I did get a call from a insurance cordinator about all my hosp. vists and calls. Since I was in the hospital and so sick they are letting alot fly! lucky for me. I would pay for any differnce as my left leg is getting worse.

my neuro told me that she will give me an emg every 6 months for 2 years.

take care

april
 

sral

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April,

When did your symptoms start? Why is your neuro waiting for only two years? Have you had symptoms for a year now and he's waiting to see if there are any lower motor neuron changes (through an EMG) within the first 3 years?
 

awieleba

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not sure. she is skeptical of mnd. I have had my symptoms for only 6-8 months that I am aware of.
My symptoms have gotten worse and my leg is worse since I first went there. I feel that I may have went sooner than any other person has and maybe my symptoms were few and they are now getting worse.

I think she ment 2 years to see if anything obvious shows up that would point to als or pls or anything else, then go from there with monitering.

we are going to do a muscle biospy soon.

thanks for interest.

april
 

olly

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hi april

twitching is a symptom of pls as it can be with many other illnesses that causes iritability of the nerves.
most with pls get them and cramping,it is these with atrophy that would make lmn involvement more likely.
have they done serial mri's or tests to rule out other things that can mimic mnd?
you are very early on in your illness to say for sure what is wrong,so please don't worry too much,easier said than done.
it can take along time to diagnosed als and in the case of pls sometimes years..........its a tough hard road but we are always here to help each other the best we can.
take good care.
caroline:-D
 

awieleba

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thanks caroline!

I have one mri (with small lesions in the white matter that have been there for years and have been compared for changes-no ms), mri on c-spine, L spine. cpk and adolose muscle enzyems were not elevated, lymes negative, no defiencies. exam showed brisk reflexes and toes on left cant move w/o big toe.
she is in the process of looking for other things, I dont think she will. there are soo many with the same symptoms and they dont find other things for them, so I am not counting on it. It is hard when your body is changing before your eyes, she cant see it as well becasuse she did not see my body before. she says my shins and forearms look that way because I am a thin person, well NO they have never looked like this and I am 12 pounds over my "normal" wieght. She did not even back in may do measurements when I asked her to,so we could monitor. oh well!

How long have you been dealing with this?

I am trying to take one day at a time. I have good days and bads days, much like everyone on here. I am just preparing myself emtioinally for what is to come with 3 young toddlers!

take care!

april
 

olly

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hi april

i left you a message on my pt thread about my diagnosed etc.
it must be so hard dealing with this having 3young children,my son was 10yrs old when i got ill and is now my carer.
how old are you? you do sound quite young for als.
there are some like myself with pls who do have slight none progressive(meaning only to a certain point)lmn involvement.
it is said there is only umn involvement in pure pls,but in some that is not the case.
in studies this is classed as umn dominant als.
as i have said many times on postmortem there is always lmn involvement in pls.
i have muscle loss and i am very slim,but you can still see it especially my shoulders and upper arms.
try to stay posative,it could still be pls or something else.
i will keep you in my thoughts and prayers.
take good care.
caroline:)
 

awieleba

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thanks caroline!

I am 36 this year, I thought that was the new 26?

I have an appt with neuro on aug. 27th to go over my new issue's and concerns.

I am trying to stay upbeat!

april
 

sral

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April,

I'm sorry you are going through this. I've read about the tests you have done, but I'm not sure I recall your symptoms. What are your symptoms which would suggest PLs or ALS? I know you have had negative EMGs which is great.
 

awieleba

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sral,

it started with weak thigh's. I think it could of started when pregnant but not sure. when pregnant, in the 5 or 6 month I got abnoramally tired and had a hard time breathing when reading to my sons. my left calve was bugging me alittle and thought it might be varicose veins. SO, those 3 things could just be preg. related but I did have them.

after I gave birth I got a host of problems (colon infection & pnuemonia) I landed in the hospital on 3 different occasion's for a week a piece. I was a massive amount of antibiotics for colon issue (C-DIFF).
during this time my legs felt like Jello and weak but I/we assumed it was from recovering from colon, as I was not absorbing food and such. I got that under control before easter and the thigh and calf weakness stayed.Then my right hand beneath pinkie started twitching (pull and release) I went to my rheumey and he said go to the neuro. ( I had been to this neuro prior, 3 years earlier my thighs were weak for 3 weeks and then it went away and was great-working out, playing tennis, etc). by the time I saw her, the twitching was all over my body, and the main one in my hand stopped and has not come back. so the twitching is what led me to get nervous. Then Inoticed I am just weak holding my baby, cant play tennis. I can do things around the house and take care kids, just not work out. I can take them for walks. Now, my leg is worse and feels like a cramp or tight. I have not had a real cramp yet. My calfs have shrunk, more on the left and there is a slight atrophy on the outer side of the ankle. I dont know how long or when, I had never looked before. but it has gotten worse. The leg is thinner than the other. My hands have lost muscle and thinned out along with my wrists. I am able to golf 9 holes, my hands hurt and ache after.

My twitching is now mainly in my ankle, rear end, shoulder blade. And for the past 6 weeks my voice has been going haorse on and off.

I dont know about pls, just that my emg's have been clean wich I though they were in pls.

Those are just the main symptoms, dont want to bore you with the rest! I use all my energy to have fun with the kids and family no matter how I feel, I get concerned that this could my last "best" summer. Sorry to be downer!

well, take care of you and your mom! (and of course your kids!)

april
 

sral

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April,

You are definitely not a downer. You are just going through alot.

From reading your post my gut says you're going to be alright. None of what you explained sounds like ALS. Infact it really doesn't sound like PLS to me either. I truly hope that what you have is neither and is something much more treatable.

Wishing you the best
 
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