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Christopher843

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Hello,

First and foremost thank you for creating this site; the people who write here are heroes, truly. I know a number of what society would normally call heroes: men with medals on their chests etc, and the people who fight their own battle with ALS are no less heroic, even more so when they take their time to help others out on this forum.

I have read the stickies and while I admit I do not have any of the primary symptoms of ALS, something is most certainly wrong with me and there is enough of a crossover in symptoms to have me scarred and seeking help, so please don't get upset with me if my symptoms are clearly not ALS. I have done a ton of reading on it and I'm still scared. Thank you in advance for your understanding and compassion.

I'm a Causasian Male, mid 30s.

A record of my symptoms:

Spring 2016 - a small essential tremor developed in my hands

Early Summer 2016 - My calves became stiff 24/7 with no relief. Eventually spread on and off to my glutes.

Early Summer 2016 - Swallowing issues - a small lump or click when I drink liquids, and crumbly foods (muffins, breads, or chewed carrots) get stuck in my throat. I then gently cough it back up and re-swallow.

Late Summer 2016 - I began having balance issues. Losing balance when taking a knee, or leaning on one leg in the dark, or when having to stand perfectly still, I start to drift back and forth.

Fall 2016 - Saw my GP - checked my balance and gave me a full neurological exam - passed. Booked CT to be sure due to balance issues.

Fall 2016 - CT scan showed 2 lesions on my brain. Referred to a Neurologist.

Fall 2016 - Neurologist did full neurological exam - passed. Booked MRI to have a closer look.

Winter 2016 - ENT ruled out any abnormalities in throat via endoscopy.

Winter 2016 - Internist ruled out Parkinson's. Gave me another neurological exam. Passed.

Winter 2016 - MRI showed several lesions on the sides of my brain. Cancer ruled out. MS suspected. Lumbar Puncture scheduled.

Winter 2016 - decreased dexterity in fingers. Nothing stopped altogether (aka no "Failure". Just seemed, off. Hard to explain.)

Winter 2016 - Lumbar Puncture performed. During procedure I confessed to Neurologist that I was fearing ALS. His reply was "If I thought you might have ALS, I'd tell you". I also brought up my finger dexterity. He did a mini neurological exam on my fingers. Passed. He said unless my hand writing decreases in quality, then not to worry.

Winter 2016 - noticed lower lip essential tremor.

Christmas 2016 - Stiffness in calves went away. Glutes remained on and off.

Jan 2017 - Lumbar Puncture for MS came back negative. Relieved at no MS, but also scared about swallowing issues and balance remaining. Neurologist said to put my brain lesions out of my mind as they were from a past cause. No current inflammation of brain fluid.

Jan 2017 - noticed left side of tongue is slightly and uniformly smaller than my right side. Nothing drastic that would cause someone to recoil in shock, but similar to how my left arm is slightly smaller than my right (I'm right handed).

Jan 2017 - stiffness in calves and glutes returned, though not as intense as the summer/fall.



This is where I'm at now. I'm terrified that I may start slurring my speech at any moment. It's like waiting for a bomb to go off. If it was just about me I'd honestly be ok - I made peace with an early death when I joined the army as an Infantryman years ago. But now I have a young daughter and it's the thought of her watching me decline and then not having her Papa around which is destroying me on the inside right now.

Your thoughts and input would be much appreciated, thank you.

Christopher
 

ShiftKicker

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Christopher- Thanks for being so thorough with your symptoms. However, you are right about things not fitting with potential ALS.

I recommend you keep going back to the doctor and making sure all your symptoms are noted and addressed- this helps keep a record of progression of symptoms. I also recommend you ask your doctor for a referral to a psychiatrist.

While you are searching for reasons for your physical symptoms, it's also important to take care of your anxiety. This is not a dismissal of your concerns, but an additional tool to use to make sure you are receiving the support you need. Stress can sometimes exacerbate underlying conditions.

I am from the Lower Mainland as well, and know how long it can take to get an appointment with a specialist in any field. Keep asking- it can be hard to be an advocate for yourself. If you do struggle with that, bring a friend or family member with you to help.

Best wishes
 

Christopher843

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Thanks for your prompt and kind reply ShiftKicker . I definitely suffer from health-related anxiety, but it's due to my symptoms, not just any given day. I do tend to go to worst case scenario, but my symptoms are legitimately there: tremors, imbalance and awkward swallowing. And of course, the lesions on my brain, but those have now been dismissed and are a non factor. Stress then causes a whole host of new symptoms for me: headaches, high blood pressure, nausea and muscle twitching, all of which subside when my stress goes away. It's really the swallowing issue that is getting to me and worrying me about ALS, even though I know bulbar ALS affects the tongue first.

I'm hesitant to see a psychiatrist for two reasons. The first being the stigma that comes with it, and second, I don't want to be prescribed any anxiety medication or pills - I know several veterans and have seen or heard of others have their lives ruined due to addiction to pills for PTSD, etc.

I may try some anonymous phone-based counselors through my employer's employee support resources. I'm also going to copy and paste my above symptom history and bring it into my GP for another look. I know the clearest way to rule out ALS is the EMG, but I with my Neurologist saying "If I thought you might have ALS, I'd tell you" I doubt I'd be eligible for one. You yourself mentioned how clogged our medical system is. Bulbar ALS is so fast, that I guess I'll know one way or another in 6 months from now regardless.
 

ShiftKicker

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You are doing yourself a disservice by not visiting with a psychiatrist while you search for answers.

I will tell you a story- I was referred to a psychiatrist who specializes in somatoform disorders (ie: all in your head stuff). I went reluctantly, but only so I wouldn't be identified as non complying or "difficult". It was the best thing I ever did. You see, someone with expertise in the field is easily able to identify what is emotional and what is physical, and to provide support as necessary. My psychiatrist has been my advocate with other doctors, managed my myriad medications in partnership with both my gp and the MANY neurological specialists I worked with while searching for a diagnosis, got me in to see a sleep specialist sooner than my gp could and encouraged me in so many ways. I strongly encourage you to overcome your aversion to seeing one.
 

codyclan

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Okay, here's the thing, when someone suggests anxiety may be cause, they respond like we don't think that your symptoms are real. We absolutely believe that you have symptoms and issues and they are not 'imagined'. That does not mean that anxiety isn't at least part of the cause of these problems. Anxiety can produce very real physcial problems even when you don't think you are anxious . Follow-up with your pcp to discuss anxiety concerns. These discussions are confidential.
All the best,
Tracy
 

Christopher843

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I'm seeing my GP on Monday to give her the above list. I'll bring up the anxiety I'm getting from my main symptoms and ask if she thinks I should see a psychiatrist. I'm a walking mess right now, listening for sluring in every word I speak.
 

Twitcherama

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Don't be hesitant to see a psychiatrist or consider anti-anxiety medication. Those aren't necessarily addicting, and being on one doesn't mean you're on a path towards crystal meth. :) I understand that pain medications can cause addiction, but I don't believe anti-anxiety or anti-depressants can. But I'm not a doctor, of course. In my opinion, there's really no stigma to seeing a psychiatrist any more. Anything you say is confidential, and nobody has to know you're going unless you tell them.

Also, regarding bulbar symptoms, you would know by now. My bulbar issues started in January of 2015. By the end of the year, talking was possible, but not easy. By now, talking is pretty much impossible. Trust your neurologist and other doctors.
 

Christopher843

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Thanks Twitcherama for sharing your wisdom and experience. Your post was a huge help. You are a heroic individual, no different than the 300 Spartans of Thermopylae in my eyes.
 

Twitcherama

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That seems a bit over the top, so I'm not sure if you're serious or not. Regardless, I hope you do get treatment and I definitely hope you do not have ALS. It's not a club I want anyone to join.
 

Christopher843

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100% serious. Your comment that I would know by now in regards to bulbar symptoms was incredibly helpful, thank you. This whole thread has helped. I'm 100% serious when I say you people here provide a heroic service to your fellow man.
 

Twitcherama

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Good, glad it helped.
 
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