Do symptoms match ALS?

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Lina

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Hi everyone,

First of all thank you for taking the time to answer my concerns. I have been very worried these past few months with whats been happening to my body. I am looking for perspective and reassurance so once again thank you for taking the time to help me. I will list my symptoms below.

-5 months ago it began with pain all over my body, radiating from my joints. Also pain in my eyes.
- progressed to continuous (i mean non stop) muscle spasms on both my calves. At times the spasms seem to move up my legs but are generally always on my calves. I sometimes feel them on my feet. I can get random twitches all over my body.
- clicking of my ankles, knees and wrists.
-after exercise my symptoms become worse accompanied by pain. My lower back is in pain that carries down to my legs
- My legs at times feel tired and heavy from the pain, spams and cramping
- random pins and needles all over my body
- at times my voice seems to go. I have to clear my throat in order to continue

As a mother of two toddlers I am concerned. I don't know whats happening to my body. My doctor is sending me for an EMG and I am nervous about it.

My question, does this sound like ALS?

Once again I appreciate your time and attention. Blessings to all of you.

My apologies, I forgot to mention I also have numbness and tingling of my right toe. This numbness seems to sometimes carry to the rest of my leg. There is at times also a slight burning sensation on my arm....

Again thank you for your time.
 

ShiftKicker

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Hello- please have a read here: Read Before Posting

It covers such things as pain, burning, tingling, numbness, etc. Those are sensory issues, while ALS is a motor control issue. While it's not clear what you are struggling with, ALS would not be the thing that a neurologist would be immediately concerned about when presented with that many sensory issues.

EMGs aren't just for detecting ALS but can pick up all sorts of other things. I am assuming you will also be getting a nerve conduction study (NCS) at the same time- which can also pick up issues with nerve issues.

Please take care, and I hope you find some answers soon.
 

Lina

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Thank you so much for taking the time to answer. I did read the section you recommended still I needed some reassurance. There is so much miss information online its so confusing to determine what's true and whats not. I've been anxious about this so trying to read through things can sometimes be difficult. So all my symptoms point away from ALS?
 

ShiftKicker

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That is exactly what my reply stated- and is supported by the link provided. However, only a doctor can provide you proper medical advice, so keep working with your doctor to find out what the issues may be. Please come back and let us know what the results of your EMG is- it always helps provide reassurance for future searchers as well.

Best
 

Lina

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Hello everyone, so I visited the Rheumatologist today and he said he is concerned about MND...is MND the same as ALS and is this doctor going off the deep end? I'm really worried now and don't know what to think. I'm waiting for an EMG and MRI... Should I be worried? He's basing this on my spasms that are non stop on my leg. Please advise, my anxiety is torture. Thank you everyone.
 

Nikki J

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ALS is one of the constellation of motor neuron diseases. your emg will tell you much. it seems like a bit ofa jump from what you have said. Of course the rheumatologist saw you but on the other hand they are not a neurologist let alone an mnd specialist. Aside from the emg which I think your gp ordered were you referred to neurology or at least advised to see one? There is more to an mnd diagnosis than just an emg
 

Lina

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Thank you for your quick answer. Yes I have an upcoming emg and mri. He based it only on my fasiculations. He did some strength test and everything is normal on that. He had be do squats and push against his hands with mine....he said it might be progressive. He said my pain and other sensations have no relationship with my spasms, which I doubt. I am so confused. Can someone have constant spasms and not have mnd? I'm truly concerned. Also would the emg show my spasms? Are spasms and nerve damage different?

Once again thank you so much. Having this support system means so much. God bless you.
 

lgelb

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Yes x 3. After the tests, you will know much more.
 

Lina

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Hello everyone,

First of all I want to thank you from the bottom of my heart for taking the time to answer my questions. I was able to obtain an appointment with the neurologist much sooner than anticipated (July 21!). I can't begin to express just how much of a rollercoaster ride this has been.

First of all my experience with this neurologist clinic in Toronto was amazing. Honestly God sent. I took both an EMG and a Neuro conduction test. Praise God, they are both CLEAN!!!! I saw two neurologists and they both said this is NOT ALS or MND. I am going back in six months as a routine check. My doctor has over 30 + years experience and has worked with a top ALS clinic in Ontario Canada. He said that anything like ALS or MND would show up on the EMG. Even if per say the EMG was completely abnormal they still could not say ALS OR MND as it takes a lot more tests to come to that.

I have an MRI two days from now, we are still in the process of finding out why I'm having this pain. There literally could be hundreds of reasons. I want to thank God who has sustained me through this whole experience.

Also, please, if someone who is not qualified to diagnose you gives you a diagnosis do not take their opinion. The Rheumatologist I went to see drowned me in a sea of anxiety because of his opinion (which he was totally unqualified to make). Go to a qualified professional.

Once again thank you to everyone here. I pray with all my heart that this helps someone who has lost their peace and joy to anxiety. I will keep you all posted on my MRI results and 6 month follow-up. By the way my spasms on both my legs (that went on 24/7) have almost completely gone. The neurologist said I have BFS. They recommended I drink tonic water and take more magnesium. Stress was making them worse 100%!

God bless you all and to God be the glory. This forum and its members will be in my prayers. Sending much love to all.
 

lgelb

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Thank you for sharing your story, Lina. I am glad you are on a better path and feel more yourself. You make a number of good points, including that ALS should only be diagnosed by a neurologist with neuromuscular expertise, who will look at not only the EMG but also the clinical picture and history, and try to rule out everything else. You also point out that anxiety can make spasms and other issues much worse, in and of itself.

Best,
Laurie
 
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