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jojoj

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I am 35 years old. I have been having problems for the last 5 months. I am going crazy with my symptoms which continue to be getting worse by the day. I have done a lot of reading, most of which is to my detriment. I need your experience and help in determining what exactly is going on with me. I am driving my family mad, and I feel myself becoming more pathetic and labile...I practically cry every day.

It started with a viral type of illness, about 5 months ago...I had joint and muscle pains through out my body. After a couple months and some brief course of steroids, I felt completely better. Blood work at that time was only significant for an elevated liver enzyme which came back down....(ALT). All other blood work which included thyroid, lyme, muscle enzymes, CBC, sed rate, hepatitis, HIV, and rheumatic labs and a slew of others were negative. I had 1 week where I felt completely better. Then one morning, I woke up with a sharp pain in the left shoulder. I noticed some twitching, and again, to my detriment I came to the possibility of ALS/MS. The fasciculations started throughout my body, and the muscle pain and joint pains improved. I really didn't have the same pains as before.

I did start to develop a feeling of weakness, however. First in my arms and perhaps a bit in my legs. I test myself and it doesn't appear to be weak at all, only the sensation of weakness. There are times when I feel I can no longer use an arm, and I feel an achiness in my proximal muscles...A couple of times, I had to put my arm down because it felt that it was so heavy or tired. One day, at work, I developed bilateral leg soreness from standing too long, perhaps. But I haven't woken up any morning and felt ok. In fact, I feel like I get more weak by the day. I play the guitar, and when I play now, my arm gets tired.

I managed to get an MRI of my brain which was essentially normal, practically ruling out MS. I got a Cspine film also, which only showed degenerative changes and some laxity at C5-6 which they say is from an old trauma. The first week of fascicuations, I had an EMG of my upper extremities which was normal, except for conduction delay in my right elbow and across both wrists. It was a cursory EMG, though.

My symptoms include fasciculations throughout my body, perhaps worst in my right leg. My arms feel the most fatigue, perhaps worse in my left arm. I get up and my arms are "tired" but I can still do pushups, etc. I don't think I have any atrophy of my muscles.

I have done quite a bit of research, but I had some questions for anyone with experience gracious enough to take the time to answer.

Is weakness in anyone with ALS initially "felt?" By that I mean do you feel weak before there is apparent weakness?

Did anyone have predominantly proximal symptoms (more in the arms and shoulders instead of forearms and hands) prior to distal ones? I know that ALS usually starts at the end of limbs, especially the leg.

Was there ever aching in the early course of disease?

If you stood on your legs for a while, did you notice you had to sit down more rapidly?
 

vmd

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jojoj:

Welcome. As you can see, many of us have many of the same questions you have. I am in the process of being diagnosed. The concept of weakness is very complex. I have a very thorough article on weakness and how to assess it. It is quite lenghty and technical. Also, I wonder if we would do ourselves a favor by not reading such material, however. So if you would like the link, I will provide it with that cautionary statement.

It looks as though you already have some medical assessments with lab work and so far so good- try to focus on the good news. Take care.
 

brooksea

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jojo,

In regards to weakness, my husband did not feel weak, but rather described it as exhaustion before we knew that it was ALS. The weakness came later. Now when he lifts an object weighing 5 pounds, he says it feels like 30.

Husband's ALS is bulbar onset, then the left hand, forearm, etc...

He had no aching or pain until about 9 months after diagnosed.

Have you been to an ALS clinic? And are your fasciculations constant?
 

patricia1

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I would take all my results to a neurologist that specializes in MS and ALS .they are your best resource Where so you live ? There are clinics all over Take care and try no to worry so much.Pat
 

jojoj

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Thanks to everyone for their comments.

I haven't been to an ALS clinic, but I may end up there...

My fasciculations are there every day, but less when I am active. I don't think I have had it in active muscles, which I hear is a good sign. I definitely have aching of muscles, but not pain. Furthermore, my fasciculations are widespread, as in arch of foot, calf, thigh, abdoment, arm, forearm, shoulder.

My arms do feel exhaustion, though...and it is more diffuse than only one limb...I feel it mostly in my arms...I believe it is more common to feel it in one limb, but I also know it can affect both arms, etc.

vmd...I definitely am not weak by medical definitions, as I can push and pull with all muscle groups more than any physician can test...I just don't know if the "exhaustion" I feel is an early symptom.

Truly ALS is a difficult illness...I hope even if I don't have it, I can make millions of dollars so I can donate to the research. I cannot believe there is no treatment for it...clearly, there is not enough understanding of this illness.
 

jojoj

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Another question please...

did anyone have sore muscles with use? My shoulder's and biceps become sore very easily after use in lifting heavy objects. I still don't feel weak, but it is sore afterwards.

I would appreciate any response?
 

brooksea

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jojo,

no muscle soreness at all. just weakness.
 

captwilly

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You need an ALS workup

My weakness started out in my right shoulder, no pain to speak of just weakness. The family doc said I needed to see an orthopod...The ortho=doc said I needed to see a neuro-doc....the neuro-doc said to see an ALS specialist, so I went to Houston, Tx to see Dr. Stanley Appel who is reputed to be the guru of ALS...
He told me you have IT but it cant have you unless you allow it to. Take heart, even if the news is bad (GOD forbid) it isnt the end of the world; its the begining of a series of challenges for you to overcome and you can. My prayers are with you however it turns out and dont hesitate to question or ask for help the folks on this board are here for you.....wm
 

jojoj

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Please, can someone help me out with 2 things?

1) my left foot started to have a sticky feeling on the sole sometimes when I walk. I suspect this may be from some muscle wasting with the skin indenting or something....Did anyone with leg starting ALS have this as well?

2) Can you guys tell me the difference between sores and cramping? I am starting to think that a lot of my sores are actually cramps of smaller muscle groups....when everyone talks about cramping, is it the real "charlie horse" feeling where you say "ouch, ouch, ouch" or is it small areas of cramping that you might not feel quite so much pain.

Editing: I don't know if this is anxiety, but the left foot with the sensation of being stuck is now twitching a whole bunch. Oh my...I am very very nervous.
 

jojoj

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please help...can someone answer my above questions?

also, the "sticky feeling in my foot"... can this be stiffness also? What is meant by stiffness in the muscles...this sticky feeling is in the arch of my left foot. Started yesterday, but is worse today.
 

Al

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Hi jojoj. My cramps were the ouch ouch charlie horse type. The sticky feeling is a new one. I don't recall anyone complaining about that before. Maybe someone else has. From the other posts I'd say some serious anti anxiety meds would help. The mind can play strange tricks on your body when you start to research motor neuron diseases.
AL
 

patricia1

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jojoj said:
Another question please...

did anyone have sore muscles with use? My shoulder's and biceps become sore very easily after use in lifting heavy objects. I still don't feel weak, but it is sore afterwards.

I would appreciate any response?
WhenI started holding my new born grandson who now is three I notice the day after I was so sore in my arms Like a long work out. and now I have atrophy and weakness in my armsPat
 

jojoj

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yes indeed...anti-anxiety meds would definitely help...I fear I am not strong enough to cope with such a diagnosis like so many here. But I try.

The "sticky feeling" I have is unusual...feels like denervated muscle or dead weight in my foot when I walk...a pressure of some type, like someone has placed tape on the area....anyone have this

Another question...is it even possible to "feel denervated muscle"
 

Nancy

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Isn't it nuts?

Hi!
I am a newbie too. The people on this site are quite amazing. I do not where our searching will take us. I know that there are lessons in everything, and one lesson I have already learned is surrender and humility. I know that I can cope with what comes my way, and I will be reading the advise from these kind people to give me support. I hope that you feel comfort too.
Nancy
 
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