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Danielson

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I posted here about a month ago. Have had issues since March and still no resolution.
A muscle disease is still in the back of my mind. Can anyone relate to these symptoms:

March: Noticed weakness in hands mostly left but spread to both arms and shoulders quickly.

April: Some twitching body wide.
Saw Neuro....some mild weakness in right leg. Hyper reflexes in legs.

June: EMG - In summary, this EMG/NCV study is remarkable for mild neuropathic changes suggesting a very mild diffuse polyneuropathy. Otherwise, the study was within normal limits and there is no evidence of anterior horn cell disease, radiculopathy, or myopathic process. (I was not experiencing fasciculations at the time of EMG test).

MRI: Several herniated discs in cervical spine (C-5 through C-7). Stenosis. Wedging and an old fracture at T-5.

July: Orthopedic surgeon says I have some spinal impingement but not any separation or cut off and wants me to do physical therapy before considering surgery. He states that my fasciculations and arm weakness are not due to my spine.

Since then I have become much weaker in my upper body with constant fasciculations everywhere. I get so weak that I just lay in bed like a mummy. Entire body is getting weaker but I've done little to no activity. Tried to go out and my legs are weak.

The orthopedic doctor stated that my arms felt "okay to him" strength-wise.

The neuro said no more testing but decided to have me see him again after he witnessed the fasciculations. He still thinks it is not ALS, but "can't rule it out because of the fasciculations'.

The weakness in my arms is my main concern. The fasciculations are a close second.
If I lay on my arm or sit so that there is pressure on my calves or feet...they twitch for hours. I am twitching somewhere at all times.

New symptom is chin weakness. My tongue seems okay but my chin and part of neck "FEEL" very week and numb. It's worse after talking a lot or eating. My swallowing seems okay.

I am in almost constant pain in my back.

Where to go and what to do next. I am practically bed-bound.
 
Anyone?
I seem to be just getting worse with no real explanation.
My wife has noticed how skinny I am getting and thinks it is from bed rest.
It's only in formerly muscle areas though.
 
You posted earlier the neuro told you he was 99% certain you do not have ALS.

Are you in bed all the time? Could that be a contributing factor to your back pain? Have you quit your job? Has a physician confirmed clinical weakness? Have you sought the help of a therapist to help you through the diagnosis process? ( It's a tough road and good help, helps). Has your neuro advised you he/she is pursuing the investigation or have you been abandoned? Have you had a muscle biopsy? Have you sought a second opinion from another neuro or specialist? Have you contacted your GP for assistance? Besides commenting on your weight, what else does your wife think about the state of your health (mental & physical).

I'm sorry you find yourself in this situation, but please keep in mind that twitching is most often benign. ( My fasciculations began well after atrophy had set in) No one here can diagnose you. You need to decide what you will do to help yourself and be your own advocate. I know this is difficult, but sadly, for many of us, it's our harsh reality.
 
Thank you for the the reply ottawa girl.
I am in bed 90% of the time. I took an early retirement from my job because of back pain. I have severe osteoporosis (diagnosed in 1990). Any activity such as standing or sitting makes my back hurt worse. But I know lying in bed is not good either.

On my first visit to the neuro (in June) he noticed "more weakness on my right side". He didn't use the word clinical. On a subsequent visit to the orthopedic surgeon he had me squeeze his fingers and said it was "good". I also had abnormal EMG findings on the right side suggesting a neuropathy (behind my knee).

The neuro said on a recent report "No more testing scheduled", but after I saw him last month and he saw the crazy fascics, he said to come back in two months as it was too soon to do another EMG. He stated that my weakness was probably from my back or metabolic (all my blood tests have been okay, but I have been low on phosphorus over the years). I asked again about ALS and he said "I don't think so'.

I have not had a muscle biopsy. They haven't mentioned one. I went back to see my family doctor with my concerns. He stated I should listen to the neuro and concentrate on my back. He felt the arm weakness was from my spine and said "twitches never killed anyone". But the ortho said the weakness was not from my spine as the cord was only slightly impinged.

My wife is scared because I look atrophied in many muscles. She does not think I have ALS , she says, and thinks my twitching is from lack of activity. But I overheard her talking to a family member and she is concerned about something muscular going on.
I can still use all my digits. I just feel extremely weak. She is at a loss and tells me I have seen the neuro, ortho and family doctor and I should trust them.

She does think I am overly concerned about the twitching but not the muscle weakness.
That weakness now includes my chin.

The clinical course now is physical therapy, but I had to cancel the first appointment because when I stand, my heart rate and blood pressure go really high. I actually think I am too weak for physical therapy. I will need to get used to daily activities before I can do anything strenuous.

I don't know what to do. We cannot afford more doctors and it just makes it seem like I think I know more than they do. But I am basically living a life in bed and have to do something. I am not that old at 50.

I am 5-6 months into this now. I went through a period of high anxiety about a muscle disease but started doing much better. Now my concern is not so much that it is ALS. It is that it is Something that has caused me to lose an entire summer and is getting worse instead of better.
 
had back surgery in 1978. since that time I have been taught several exercises to reduce pain and improve back. some can be done on bed. get a pt to teach you bed exercises to get some strength back and get out of bed. to recover from bad back requires bed rest AND UP DOING NORMAL ACTIVITIES. blood pressure and pulse really high what did it measure? when doing endurance exercise my pulse would top 125. maybe there is something in Eastern Medicine that will help improve your osteoporosis without side effects.
 
Thanks. Hoping the physical therapy will relieve most of my symptoms. Maybe the chin weakness as well? I have tried a few exercises my GP suggested, but it causes more pain.

If I get up and do any kind of activity my BP goes to about 140 over 100. Has gone as high as 158 over 100 and my wife called an ambulance.
My pulse goes from a resting 70-90 to as high as 150's with minimal exertion.
My GP is afraid to give me a beta blocker because when I sleep my pulse goes in the low 40s.

I know part of my muscle loss is due to inactivity, but I was active until the arm weakness.
Then came the fasciculations and now chin weakness that comes and goes.

Don't have a clue as what to do or what doctor to seek.
The neuro is pretty confident it's not ALS and the Osteo Dr. is pretty positive my weakness is not from my decrepit spine. So what's left?
 
I posted a response to this post but it has not shown up yet...guess it will soon?
 
I guess my last post was lost.
My blood pressure with activity goes as high as 150's over 100. That is just getting up and walking.
The doctor is afraid to give me a beta blocker because my resting heart rate (sleeping) goes in the low 40s.
I feel like I am losing valuable time while my arm, chin and torso weakness get worse, but I have seen the neurologist, my GP and and Orthopedic Surgeon.
I have been down in my back before and in bed for a month or more but never had the facsiculatons and extreme feeling of weakness until this time.

Hopefully the physical therapy will help.
Thanks for your reply.
 
I'm mostly unsure of which route to take.
I don't know if I should see another neurologist, orthopedic doctor or what?

Just to clarify:
1. A feeling of profound weakness in my arms, upper torso and chin is not typical of ALS? I would not be aware of the "feeling" of weakness?

2. ALS would have showed up on the EMG even though I wasn't having fasciculations at the time of the test? (2 months after symptoms).
 
Anyone?
The weakness is really getting profound.
 
Did you ever look into Dysautonomia? My neuromuscular doctor ordered a autonomic function test for me and I was diagnosed with this, among other things. Sometimes we have more then one problem. Sometimes they are secondary effects.
I have palps, high/lows BP's, racing of my heart, and low body temps while I am hot and sweating.

I wasn't feeling my fasci at the time of both my emg's and mine showed up on mine. BTW my fasci are benign too.

My best to you..
 
Thanks for the reply monster. I have never heard of that but will look it up.
I do have high/low blood pressure, racing heart and low body temps.

Meanwhile my feeling of weakness is getting worse and the fascics are also getting worse. Body wide but a constant twitch in my foot for three days now. My whole upper body feels extremely weak. Plus I have the new and added bonus of feeling spacey and unable to concentrate.
I have no idea which doctor to go to but I need to do something quick.

The neurologist thought my back was causing the weakness, but the orthopedic surgeon says it is not. I know the EMG just only showed some neuropathy in the right leg area, but I still have concerns that I had it done too soon. I feel much weaker now.

I have seen an endocrinologist too and all my tests were normal. The osteoporosis with herniated discs and an old fracture are the only thing I know for sure I have.

I'm almost at the point of giving up.
 
I don't know your whole back story, but have you gone to an ALS clinic? A neuro who only sees ALS cases?
 
No..I have seen a neurologist and an orthopedic surgeon.
The neurologist states that my weakness probably comes from my back and the orthopedic surgeon says not.

I want to pursue whatever is making me feel so weak, but don't know if that means seeing an ALS specialist or maybe another orthopedic doctor. I am randomly twitching everywhere ....and one area in my foot has been twitching for 4 days. I'm afraid it will "wear out" the muscle.

My wife is now saying we should "wait and see", but I am frustrated (extremely) that I don't have the energy or strength to do anything. I've lost an entire summer.

Should I see an ALS specialist in your opinion?

My problem is I am completely confused. I do not know what path to take in finding a diagnosis. It's been 6 months of weakness and 5 months of twitching.
 
I'm confused, if you don't think it's ALS why post on an ALS forum? I pursued a neuro specific to ALS because my symptoms all scream ALS to me, if they 'screamed' something else, I would pursue that specialist. In fact, I did, in the very beginning before more incideous stuff started showing up.

Anyway, my two cents. If you think it warrants it, why not see an ALS specialist? Or at the least, a neuromuscular doctor. If you're bedridden, I would think you need to go now.
 
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