Old 06-03-2016, 12:28 PM #1 (permalink)
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Default Un-diagnosed for 7 years - recap and update

Hello everyone, I have stayed off this forum for a while as I do not have an ALS diagnosis and I wanted to avoid being disrespectful by bringing up conditions that probably don’t scratch the surface of what some of you are going through. However, I was exchanging a number of visitor messages with other members and it occurred to me that there may be others that are undiagnosed who could be interested in this update … so here it goes:

I am a 38 year old man that has been having health concerns for 7 years now. My symptoms can be summarized as follows:

-Muscle stiffness that is worse in the morning and eases up as I move but never goes away
-Disturbed gait / walking, some issues keeping balance
-Random Body-wide fasciculations and twitches
-Strong fasciculations / muscle rippling when contracting a muscle (body wide)
-Intense tremors in neck and shoulder area when lifting above head
-Extreme core shaking when doing any exercise like a sit-up or push-up
-Joint stiffness and pain, some muscle pain in legs, constant back pain and stiffness
-Loss of muscle mass in both ankles (very thinned out)
-Constant fatigue, cannot get better with sleep, cramps
-Muscles “feel tired” all the time as if I over used them
-Neck stiffness and jaw/tongue cramps
-Bouts of Anxiety and depression brought by this “in limbo” situation.

I’ve been able to keep my job so far but I have severe exercise intolerance and things that were once “light” now feel “heavy”. For instance, my laptop bag carried over my shoulder will feel a lot heavier and will make my arm drained and flabby after I carry the laptop for 20-30 minutes. Standing up the entire day will completely drain me and last time I had strange “core body cramps”

Things have not been stable, it all started with slight fatigue and leg discomfort and has progressed to a much more pronounced discomfort and fatigue over 7 years. New twitches developed, exercise intolerance increased, muscle tremors (dystonia I believe it is) is much more prevalent in more muscle groups.

So I am on this forum again, worried that it could be a slow progression of ALS. Trying to see if others that are undiagnosed have found some ways to cope with their symptoms or found anything that improves their condition. One of my good friend’s wife lost her father to ALS and you can see concern all over their face when I tell them my story… it scares me a lot.

I have had many tests: Full blood test including (standard tests and then some: vitamins, electrolytes, MG – Antibody, etc…), MRI of spine, seen by neurologist 3 times, seen by 1 neuromuscular neurologist who performed an EMG (2014), 1 neuromuscular and neurometabolic expert who performed an EMG in 2012 and found some re-innervation and noticed one fasic – other than that it was normal.

List of potential diagnoses that I got: 2009 – CFS, 2011 – Idiopathic Syringomelia (8mm syrinx at C2), 2012 – Chronic Lyme disease (doc in US), 2014 – Fibromyalgia or BFS . My neuro, who is the type with lots of grey hair doesn’t believe that any of these conditions could be causing my symptoms and is trying to figure this out.

So here are my questions:
Does this sound like it could be a slow progressing ALS?
Based on your experience with various conditions and tests, any suggestions as to what else I might want to look at? Muscle biopsy? Spinal tap?

Thank you for reading. Your help and advice is extremely appreciated.

Matt
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Old 06-03-2016, 12:46 PM #2 (permalink)
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Default Re: Un-diagnosed for 7 years - recap and update

Why does your neuro discount fibro/ bfs? That was my thought when reading your symptoms.

What do your doctors say about ALS? I certainly don't think so but your doctors' opinions are what count- they have seen and examined you.

I can not think of anything diagnosable by spinal tap that fits your symptoms. Muscle biopsy? Not sure what you would be looking for. Have you been evaluated by functional medicine? That group of disorders is being better recognized in neurology now. The neurology department where I am seen now has a clinic for it.
ETA functional disorders are not the same as the functional medicine holistic medicine movement

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Old 06-03-2016, 01:06 PM #3 (permalink)
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Default Re: Un-diagnosed for 7 years - recap and update

Thank you very much for your response.

My neuro thinks that I wouldn't have all the stiffness and slow progression with BFS and I barely have enough tender points for a fibro diagnosis. He also thinks that it's something that is seen more often in women then men and that it's a label taht has been given me quite fast without looking into other possibilities. The muscle biopsy would be to look at any mitochondrial disorders.

Neurologists said it's not ALS. Mainly because they didn't find clinical weakness. My EMGs done a few years ago didn't show anything indicative of ALS at that time.

I have not hear of functional medicine, but after looking it up for a few minutes it seems that it's something holistic that is practiced mostly by Naturopaths in Canada. I couldn't find MDs specializing in it.
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Old 06-03-2016, 01:40 PM #4 (permalink)
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Default Re: Un-diagnosed for 7 years - recap and update

When I saw you post about exercise intolerance, I immediately thought of mitochondrial disorders. I think a muscle biopsy is a good idea.

While your doctor is an old grey hair, and super experienced, sometimes it takes a different doctor to see something someone older and set in their ways may have missed. The best and most thorough neuro exam I ever had was done by a neurology intern while doing her turn at an ophthalmology clinic specializing in MS eye issues. So far from what I was suffering from, but she had lots of fresh information and interest in all things neuro- so it was on her insistence I see a neuromuscular specialist.

And, correct me if I'm wrong, Nikki, but you are talking about actual functional disorders? As Matt states, functional medicine is an alternative or wholistic therapy label here in Canada- similar to, or included with, Naturopathy.
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Old 06-03-2016, 02:00 PM #5 (permalink)
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Default Re: Un-diagnosed for 7 years - recap and update

Yes functional disorders as diagnoses- not as an approach. Thank you Fiona.
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Old 06-03-2016, 02:29 PM #6 (permalink)
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Default Re: Un-diagnosed for 7 years - recap and update

Thanks for clarifying and suggesting to look into that. I will bring it up at my next neuro appointment. I did have an epileptic seizure when I was younger, maybe that will have some relevance to a functional neurological disorder diagnosis. I will also inquire about the mito tests and muscle biopsy.

Thank you for your help. matt
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Old 06-03-2016, 03:44 PM #7 (permalink)
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Default Re: Un-diagnosed for 7 years - recap and update

When I read your first post I immediately thought of fibromyalgia and cramp/fasciculation syndrome. You don't really need all the points to be tender during an exam as fibro migrates to different parts of your body. It would not be unheard of to have more than one thing going on. I'm assuming all autoimmune disorders were ruled out.

As Nikki pointed out functional disorders is getting a lot of attention and it is a specialty worth looking into.

Mayo Clinic has a functional pain clinic. They treat all diagnoses but specialize in undiagnosed pain.
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Old 06-03-2016, 04:35 PM #8 (permalink)
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Default Re: Un-diagnosed for 7 years - recap and update

Thank you. I will definitely look into the functional pain clinics in Toronto. I think there is a doctor at the western hospital here that specializes in movement disorders and also looks at cases of functional neurological disorders. I tried to do improvements in my life style that were in line with dealing with fibromyalgia but these didn't provide any improvements at all. I will look a bit more into that as well, I dismissed it rather quickly as my neurologist pointed me away from it.

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Old 06-03-2016, 05:31 PM #9 (permalink)
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Default Re: Un-diagnosed for 7 years - recap and update

Apparently I’m missing something. I see these five data points:
1. “Neurologists said it's not ALS.”
2. “they didn't find clinical weakness.”
3. “EMGs done a few years ago didn't show anything indicative of ALS”
4. “started with slight fatigue and leg discomfort”
5. “has progressed to a much more pronounced discomfort and fatigue over 7 years.”
Normally, I would say “You situation, which is not ALS, should remain in the hands of your doctors, and does not belong on an ALS website.”
So why aren’t we saying that?
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Old 06-10-2016, 12:38 PM #10 (permalink)
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Default Re: Un-diagnosed for 7 years - recap and update

Thank you for everyone's comments. I posted my 7 year update on this forum as ALS is still in the back of my mind and I had seen some other undiagnosed people with similar symptoms having concerns like mine. I am grateful for all your responses and direction, your interest in helping me figure things out can only be interpreted as a genuine kindness and care. I am very appreciative of that. I will continue working with my doctors and will most definitely look into the suggestions you made. Have a good weekend.
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