Old 02-15-2017, 06:41 AM #1 (permalink)
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Default Ruling out ALS

Hi everyone, another newbie reaching out for answers no one can really give. I'm Sam, a 41 year old single mom of 3 kids.

My journey started just 11 months ago and I'm no where closer to coming to an answer or diagnosis. It started instantly, with incredible pain in my left shoulder and arm. For months I had to convince my GP the pain was severe at it is.

After 3 months I started physio and this is when I noticed the atrophy. I'd lost obvious muscle (I was in good form before all this) on my shoulder, pectoral, tricep, bicep all lost tone and the thumb muscles have completely gone. Physio suggested it was due to lack of use, so I went back to the GP.

The GP finally referred me to a neurologist who initial findings were positive babinski reflex on left foot, loss of strength in left arm and positive Hoffman on the left hand. I was sent for an MRI which showed foraminal stenosis and a trapped nerve root. I was happy with the results and was and still am waiting for my follow up appointment. This was in December.

I was taking Gabapentin for the pain and that worked well until I started blacking out. I weaned myself off and at the moment only take naproxen when the pain is really bad.

Since December, I have noticed a slight limp developing on my left side when I walked for a period of time. These symptoms stayed pretty much the same up until a few weeks ago. Over the last 2 weeks I noticed how heavy my limbs had become (left side slighty more than right) and simple tasks like cooking a roast dinner or folding laundry seemed to be increasingly more difficult.

I went back to the GP and he noted obvious weakness in my left leg and and thumb atrophy on the right hand and a positive Hoffman reflex. He's requested my follow up with the neurologist to be sped up, so now I'm waiting.

Today I'm sitting a my desk feeling like gravity is pushing my down, the heaviness of my head, arms and Legs are something else. The only relief I get is to lie down, which I can't do.

I know it could be a number of conditions but I'm here because this is my worst fear, life's thrown some real curve balls for me and my little family and this would be another. I'm a realist and any of the conditions I may have are not pleasant but this one scares me the most. But I'm also a realist, if I an dealing with anything as harsh as ALS how long should I wait to see the neurologist? GP thinks I may be waiting a while yet, I don't know how much longer I can wait. Holding my phone, using a mouse, walking upstairs and even holding my head up feel like hard work..

Any suggestions as to my next steps...

Thank you for taking the time to read.
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Old 02-15-2017, 11:40 AM #2 (permalink)
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Default Re: Ruling out ALS

Hi, Sam, from the history you describe, ALS isn't off the table, but it's not at the top of the list. I would imagine that the neuro will order an EMG and you will have more clarity soon. If you are still doing physio, or even if you're not, I would move on to massage and stretches that elongate the muscles, and try to avoid temperature extremes. And particularly, I would stay hydrated.

Best,
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Old 02-15-2017, 12:43 PM #3 (permalink)
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Default Re: Ruling out ALS

Thanks Laurie,

I only got 4 sessions with the physio and was referred back to the GP. I have been doing gentle yoga suitable for spinal stenosis, if there is going to be a long wait I'll ask my GP for physio again. Thanks for the useful reply, I am still hoping it's due to cord compassion or even MS.

I wasn't letting it bother me so much until the last week when I realised the heavy feeling wasn't going away. It's affecting the way I walk and I'm getting some strange looks at work. I feel as if I'm compressing in on myself.

Thank you again,

Sam
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Old 02-16-2017, 12:14 AM #4 (permalink)
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Default Re: Ruling out ALS

I agree with Laurie. And I’ll go further: I would be very surprised to see an ALS diagnosis come out of this. I don’t think it’s possible for these three symptoms to be called ALS.


“It started instantly, with incredible pain in my left shoulder and arm.”
This is absolutely not an ALS symptom.

“I started blacking out”
Again, not at all an ALS symptom.


“gravity is pushing me down, the heaviness of my head, arms and Legs are something else.”
A feeling of heaviness all over the body would not be a symptom in the new onset of ALS.


While you're waiting for your appointment don't worry about ALS.
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Old 02-18-2017, 11:41 PM #5 (permalink)
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Default Re: Ruling out ALS

Hi Mike,

Thank you for taking the time to reply, it's really appreciated.

I have tried to put my fears aside and keep up with my everyday routines. It's due to the my demanding scheduled is become really apparent how much weaker I've become. I have been back to the doctors and they've started to take notice.

You're right about the symptoms I described not being typical of ALS and I took comfort in that the blacking out, which was due to the side-effects of the medication, which thankfully stopped now I'm off Gabapentin. I didn't make it all that clear in my first post.

The neuropathy and atrophy in my hand, arm and shoulder is what started all this and as you say it's not an als problem. After the scan revealed stenosis and 2 trapped nerves, I was relieved and both myself my doctors pretty much thought treatment would be sought after the follow up with the neurologist.

The last few weeks however the weakness and atrophy in my left side (arm and leg) has increased quite significantly. I presented at the doctors again Thursday because I'd pretty much lost all strength in my left hand. I saw another doctor who seemed to be seeing another picture. He explained that the atrophy in my arm doesn't present correctly with the muscles that are wasting. In detail he told me what nerves affect what muscle and that I shouldn't be losing all my muscle in my arm and and it shouldn't be causing atrophy in my leg. In his words he thinks the pinched nerves and stenosis are a 'red herring'.

He was quite concerned and wanted to admit me to hospital, but as I said in my first post I'm a single momma and dropping everything and going in wasn't an option. That said, he has spoken to the neurologist and I have an urgent appointment, which is only a few weeks away.

I'll try to keep upbeat until then but it's hard when the weakness (which I defined as heaviness before) is making every day tasks increasingly difficult.

Thanks again for your replies.

Yours hopefully,

Sam
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Old 02-19-2017, 07:06 AM #6 (permalink)
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Default Re: Ruling out ALS

Hi Sam

Sorry to read your update but happy to hear they are expediting a neurologist visit which should give you more information and a plan to figure this out. You are rightly concerned but, as the saying goes, it is not ALS until it isn't anything else. In other words there are going to be other things on the table still.

Wishing you good luck and please keep us updated
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Old 02-19-2017, 11:40 PM #7 (permalink)
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Default Re: Ruling out ALS

Thanks Nikki, I'm adopting a positive mindset until I know what I'm dealing with. Thankfully in the long scheme of things there's not that much longer to wait.

I'll drop an update when I know more.

Thanks to you and everyone else who replied.

Sam
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Old 02-23-2017, 11:49 PM #8 (permalink)
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Default Re: Ruling out ALS

Hi, back again.

Firstly I want to thank you all for your support and advice and as in my previous post I've been trying hard to keep occupied and my thoughts in a positive mindset. I've had my appointment moved forward to this Monday which is fantastic, especially for the NHS.

With it being so close I also feel a little apprehensive, I've been telling myself over and over it could be a number of things and to go with the flow. But, there is that one small thing my mind keeps wandering back to. The hand atrophy, in particular the stereotypical split hand! My left hand is severely affected and the thenar muscles are completely wasted but the rest of the hand is OK, and the right hand thenar is also in the process of shrinking.

Do you know if there are other conditions that cause this kind of atrophy, as all resources all point to ALS?

Thanks again for your time.

Sam
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Old 02-23-2017, 11:56 PM #9 (permalink)
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Default Re: Ruling out ALS

Apologies, please ignore that last question. Think I'm letting the worry get to me a bit. Let's hope it's a simple case of carpal tunnel syndrome.
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Old 03-07-2017, 01:35 PM #10 (permalink)
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Default Re: Ruling out ALS

Hi, I've been trying to keep my mind occupied since my neurology appointment last week. Not all that difficult when work are kicking off about my appointments. In a bizarre way it's an unpleasant distraction. I'm waiting for a nerve conduction test and an EMG and other than particularly stressed just getting on with it. My fingers have been stiff for a good a while but this morning I lost the ability to splay my ring and middle finger apart. (Found out trying to braid my daughters hair) I'm off to my GP in the morning, not sure what else at this time, not a welcome development but still holding out for the best.
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Old 03-07-2017, 08:03 PM #11 (permalink)
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Default Re: Ruling out ALS

Mike makes some seriously good points about your symptoms. Remember, a diagnosis of exclusion does indeed mean "It is not ALS until it can't be anything else". You still have several possibilities on the table. I have also not heard of one person who began with severe pain and black outs and went on to an ALS diagnosis.
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Old 03-07-2017, 11:25 PM #12 (permalink)
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Default Re: Ruling out ALS

Thanks Lenore,

I sincerely hope you and Mike are right. The severe pain is now gone, MRI indicated inflamed nerve roots causing neuropathy pain. Black out's where a side effect of gabapentin I took for the pain. All had cleared up now.

I hope those cards turn a good hand for me, I'm trying to put it at the back of my mind until I have the nerve tests. It's just become harder to ignore now my fingers have just stopped responding and I have a lactic acid type burn in my bicep just holding my phone.

I will see what my GP thinks and take it from there.

I'd also like to thank each one of who have taken time to reply, it is appreciated.

Sam
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