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Matt21

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20
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Learn about ALS
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CA
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ON
Hello Everyone,

I got some personal messages about my status and thought of sharing with you. I am still freaking out over ALS by the way, which is not healthy at all...

I'm a 39 yr old man who has been experiencing ongoing neurological/muscle issues for the last 10 years. I will summarize the progression below and if anyone has some suggestions or can relate from personal experience, I would love to hear from you. I have not been given a definite diagnosis of anything as of yet. Below is my best recollection in chronological order of this journey:



- It started when I noticed a difference when biking, it simply became more difficult to do the same path as I had always taken to go to university - 2007

- At the same time, I noticed that i would always wake up fatigued with quads and thighs feeling as if i had ran the day before (which i hadn't) - 2007

- I saw a few doctors who didn't notice anything wrong, one suggested CFS and to wait it out. My symptoms never improved, after I move my legs for a while they get a bit better in terms of the stiffness/numbness going away. Since I was having headaches I was referred to a neurologist.

- In 2008, the neurologist did an mri and noticed a small syrinx at my c2-c3 level. It is a small sac inside my spinal cord that is 2mm wide and 9mm long. Apparently I was born like that and this is not the reason for any of these symptoms although opinions differ on that too.

- I waited for about 2 years and then in 2010 I decided to go to the gym to get in shape. After my first workout, all my back muscles became so stiff that i had all sorts of back pain for about 2 months

- Over time, i became more easily tired. Walking up stairs i get out of breath.

- Whenever i flex my muscles, they shake like crazy. I get all sorts of tremors when squatting, trying a plank, flexing biceps. noticed that in 2010/2011. It is still ongoing and is worst than before.

- Developed intense twitching body wide that is exacerbated by anxiety. Also noticed a muscle rippling effect under my skin when doing a squat, shoulder lifts, etc. - 2012 to today

- The weakness seems always proximal but stiffness develops after i use my hands or feet for an extended period of time. For example, after cleaning wheels of a car, my fingers are stiff like metal wires. After playing some soccer, my feet feel the same - notice in 2012/2013

- Feeling of heaviness spread to shoulders - 2013 but then subsided in that same year. It now came back accompanied with neck stiffness in the throat/tongue area - 2017. I also get a very hoarse voice after I speak for a few hours.

- Through out all of this, my sleep has been unrefreshing and i always have a feeling of fatigue.

- Constant tongue fasciculations/rippling effect (2011-today)

- Progressive exercise intolerance (2008-today). I can still go skiing or play volleyball but i will get a lot of cramps and will be totally wiped the next day. Also, any exercise that causes my muscles to flex results in vigorous shaking.

- I have a numb spot in the middle of my back and above my knee where i cannot feel any pain or temperature.

One way to describe how i feel is similar to the stress/anxiety that someone experiences before a speech. When your muscles are tense, your legs/arms feel flabby/shaky. However, i feel like that all the time. And, that feeling has been getting worse and worse.

- Lastly, the past few months have been very tough. I noticed my arms being very weak although I can still do a few pushups but less than before. They simply feel shaky and I can see the shaking motion in my hands.


A bit about the tests/ medical appointments:

- CFS suggested in 2008 but dismissed by neuro

- MRI in 2009 revealed a small syrinx between c2-c3 (9mm long and 1.5mm in diameter) - neuro says it is asymptomatic and i always had it

- Rheumatology: diagnosed fibromyalgia but neuro dismissed it

- Muscular Neuro: did EMG/NCV in 2011 / 2013 / 2014. Did not notice anything abnormal. Only some fasciculations, normal recruitment, elevated activity upon insertion of the needle. I was told it was not ALS, which i was terrified about

- Biochem Neuro: did extensive bloodwork and did not notice anything that would suggest a metabolic neuromuscular issue

- Saw chronic lyme disease doctor. Put me on antibiotics for 3 months without any significant results. My igeneX test (western blot) was inconclusive although i have been travelling a lot to different areas of the world.

That's my story, i left out details believe it or not. It's been a long journey. If you have read this far and have some suggestions or relate to what i am going through, please let me know. This is obviously taking a toll on my family and I. I cannot get the fear of ALS out of my head and I believe this health anxiety is exacerbating a lot of my symptoms.

I don't want to offend anyone suffering of ALS with my fears of ALS. I am aware that this is a terrible disease and my thoughts and prayers are will everyone on this forum. I wanted to share this for others like me that are lost in the medical diagnosis system and are scared/concerned.

Thanks for reading.
Thank you for reading.
 

ShiftKicker

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Joined
Mar 16, 2015
Messages
2,605
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DX UMND/PLS
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06/2015
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State
BC
Hey Matt. I had a look through your posting history. You've received a huge amount of feedback in the past about directions to search and most importantly (in the context of continuing to post on an ALS forum) that you have been cleared of ALS. After 10 years, there would have been an emg finding.

There is no denying you have something. Unfortunately, that something does not follow a pattern of ALS. It's been too long since symptom onset- you would be seriously impaired and there would be some sort of indication on an EMG.

A few things-

On your last thread there was mention of functional disorder- which is in no way the same as factitious. It's a real health issue. Have you fully explored this possibility? Also, have you continued to see a counselor or psych specialist? A person well trained in somatoform disorders or helps folks with complex and chronic long term health conditions can not only support you through life affecting issues, but can be a powerful advocate for you if they feel there are underlying health concerns.

Have you seen a physiatrist? That is less about a diagnosis, but a way to help out with assessing weakness and dysfunction and coming up with a plan for how to accommodate any changes and possibly provide some therapeutic exercises or new directions to seek info.

If your neurologist is not doing anything but dismissing other specialists' diagnoses, have they provided reasons why? Does your neuro say your problems are neurological? If your issues are not neurological in nature, your neuro is not the person to continue to see for care.

This has been going on long enough with no diagnosis that it's time to look at focusing on mitigating your symptoms instead of seeking diagnosis in order to increase your day to day comfort and function. Unfortunately, there are people out there who never get a proper diagnosis even though there is something clearly wrong. Whatever they have is too weird, too rare, or they are the only person with a specific set of symptoms that can't be shoehorned into any known disease.

Here's the thing, a forum for ALS seriously can't help you. It can certainly increase your anxiety. Focusing on ALS can sometimes make people focus on a very specific band of symptoms and ignore other symptoms that could indicate something else entirely.

Seek a psychiatrist if you are not seeing anyone already. A psychiatrist is a medical professional and will be covered under provincial health- unlike a counselor or psychologist. Your gp can refer you. It may be a wait, but you need someone to help guide you though coping with a complex and life limiting disease. I was referred to one before my diagnosis. I can not emphasize enough what a life saver mine was. This is not a dismissal and a "all in your head" recommendation. Regardless of what you have, you need to find ways to cope.

~Fiona
 

KarenNWendyn

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2,888
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PALS
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07/2017
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US
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Ten years of symptoms and a normal EMG rules out ALS. I agree with Shiftkicker’s suggestions.
 

KimT

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08/2015
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I understand your wanting to know what's wrong. Who wouldn't?

There's a condition called Cramp Fasciculation Syndrome. It can sometimes mimic some of the symptoms of ALS. It's benign and the treatment, per a neurologist, is Valium.

Besides getting your anxiety under control, have you thought about genetic testing? They now do comprehensive panels for muscle and neuro conditions. The two companies I know of are legitimate and a neurologist friend has used both. They are In Depth Diagnostics and Invitae. Talk to your doctor about these. Also, the National Human Genome Project has an undiagnosed disease program. With your doctor's support, you can apply for consideration. I'm not sure if these organizations serve people from Canada but I just thought I'd put it out there.

In 1998 I was diagnosed with fibromyalgia at Mayo Clinic. Fibro can be extremely painful and can make you feel fatigued. Many people with fibro also have disautonomia. They also have anxiety/depression, for good reason.

I agree 100% that you can rule ALS out and wish you the best in getting answers and treating your symptoms.
 

Matt21

Member
Joined
Aug 8, 2011
Messages
20
Reason
Learn about ALS
Diagnosis
00/0000
Country
CA
State
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Thank you for the responses, direction and help. To answer some of the questions:

- I have my neuro follow up this Monday and I will talk about functional neurological disorder.

- I have been on meds for anxiety and saw a psychologist for a while. The meds and therapy help with the anxiety and lessen symptoms that are normally exacerbated by stress. However, I never corrected the physical ailments and once I was in a better head space I went of the medication.

- The neuro dismissed fibro because he felt there was weakness in my arms and that my conditioned appeared more neurological in nature. The twitches, shaking, all the blood work and history make him believe it is neurological in nature.

- The last EMG was a few years ago and not recently. I think it was in 2014. I already had a number of these symptoms then, just not as severe as today. There is a fantastic NMD clinic in Toronto that specializes in ALS but also other neurological disorders impacting movement and so on. I will see if I can get a referral there. It's in a teaching hospital with a lot of younger doctors. Maybe it would be worth seeing a different neuro/neuromuscular specialist.

- The doctor that said this could be CMS or Fibro made that statement and didn't have much of a follow up after. It was a bit like he put me in a "bucket" and sent me off. To some extent, I would be ok with that diagnosis but the progression of symptoms and the total lack of positive impact of any treatment recommended for fibro or CFS that I tried make me wonder if this is not something a lot worse. That's what brings me to this site. Googling conditions and finding people online that were misdiagnosed for a while to then end-up with severe neurological disorders like ALS fuels my anxiety and makes me want to get to the bottom of what's wrong with me. I have already scheduled an apt to see some help for the mental part of my issues as the anxiety is too much at the moment.
 
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