Second opinion?

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Annony12

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Jan 13, 2020
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Learn about ALS
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00/0000
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US
State
UT
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Salt Lake City
First off, I want to say thank you to everyone on here who is willing to help others through the difficult stages of navigating the fear of diagnosis. This is a horribly scary diagnosis to face and you all provide wonderful support to folks. I've never seen an illness cause sick extreme anxiety in people.

My symptoms started 5 months ago with cramps in both of my calves. I didn't really think much of it I just assumed it was from working out, the cramps became much more severe over time. Then my whole body fatigue started. And some spasms and twitches in my calves with continued strong calf cramps. I will admit I called on doctor Google which which led to a ton of anxiety. I finally decided to reach out to my PCP who did so much blood work we have joked about being anemic. Everything came back clear so I was referred to a neurologist that specializes in ALS. At this point my anxiety became far worse because I had never heard of ALS before. I met with the neurologist he did a full work up testing reflexes walking on heels etc. Then laughed and told me I shouldn't be there. No explanations but said I don't have ALS or M S.

Unfortunately that is not where my symptoms stopped. I then started having weakness in my hand that made it difficult for me to preform small tasks for example I like to do puzzles but found I was having difficult handling the pieces.

I made another appointment with the neurologist who at that time didn't even do an exam talked to me about my new symptom and kept leaving the room to work with others. I left the room once too and when I came back he was sitting with my husband talking about how this is all in my head. Which made me feel horrible considering he didn't even bother to do an exam.

Today 5 months later the symptoms I am still having are cramps in my calves and a tightness that is making it difficult walk. Weakness in hand making it difficult to perform small actions as I've said puzzles which have become even more difficult. A tremor/shake in my back that is sometimes so severe it makes my bed or desk shake. Diaphragm spasms that cause me to forcefully suck in air. (This one has only been going on a couple of weeks, it's my new friend to the party.)

What my question to you fine folks is, would it be in my best interest to get a second opinion? The neurologist I seen is convinced it's a non issue he has also convinced my PCP and husband that it's a non issue and now I'm at a point where I don't know who to turn to. I feel like I'm forced to try and find answers on my own. Or maybe find new doctors (and a husband ... Joking of course) all together. Please don't be offended by that joke I seriously appreciate the support my husband has giving me, I also am trying hard to stay positive and still laugh even though I'm scared of what my body is going through.

I appreciate the time you take to respond to these questions. I know for many of you it's difficult to send responses and for others your taking time that you could spend with your loved one. Truly my heart goes out to you.
 
If a neurologist specializing in ALS told you s/he doesn’t feel you need to worry about ALS, then you’re probably fine. If you don’t buy the answer and are still concerned, then by all means seek a second opinion. Let that doctor know your symptoms and ask “what is wrong with me”, not “do I have ALS?”. If your second opinion doctor says “no ALS “ or tells you it’s anxiety or something else, then you should be prepared to accept that.
 
I understand how not knowing what is wrong can feel. If this is affecting your life, get a second opinion. Don't chase a diagnosis of ALS because you'll probably develop more symptoms. Let the second opinion doctor do her job.

Until that time, I would stay off online health forums of all kinds, including this one. You're welcome to come back after you've had another opinion and report what the doctor thinks.
 
Well good news is a found a better PCP who doesn't make me start the process over every single time I meet with them. After discussing all of my symptoms with him he referred me for an EMG and did a basic neurological exam in his office he noticed absent reflexes in my knee but didn't seem overly concerned about it.

I had the EMG a couple of weeks ago they only tested one of my legs. They were only able to test a couple of muscles and said the test was limited due to the fact that I am on blood thinners. But after the test was complete the neurologist told me that he didn't see anything of concern on the EMG. They did not give me a copy of the results. I think maybe I should have asked for them.

A couple weeks later I am still feeling Al of my symptoms mainly cramps in both of my legs and weakness in my hand. The weakness is now making it difficult to type and hold objects. I met with the hand specialist about a week ago who told me there is nothing mechanically wrong with my hand and referred me back to neurology. Referring me back to neurology has me nervous again thinking what if it could be ALS? What are the chances that 6 months after symptom onset the EMG would be totally clean? That doesn't seem realistic to me. I have read on here and the sticky that the EMG is the gold standard test and that it shows ALS long before the symptoms even become apparent.

I just feel like I'm having a hard time because I'm experiencing all these symptoms and no one seems to be able to tell me why. I frequently ask myself if I'm causing myself psychosis from stress and anxiety.
 
The chances this hand issue is ALS are almost nil. To answer you, your EMG would show ALS before you noticed symptoms, so let that one go straight up.

This may help - most neurologists never encounter a case of ALS in their career, or maybe a small handful during that entire time.
They do however encounter hand issues on a daily basis, and find other, treatable causes.
So go to the neurologist with an open mind, ask questions about what this could be, don't ask if you have ALS as you just sidetrack things in ways they don't need to be.
With the anxiety you clearly show, you will be hyperaware of every little thing and this will only make things harder if you hone in on ALS as the cause.
All the best. Let us know after the neurologist gives you a diagnosis.
 
Your symptoms can be "real" and still not be worth worrying about. Sorry that you have "it's all in your head" dismissal to contend with, but don't let their ignorance contribute to your fears.

Of course, you are entitled to a copy of results and should ask. But the hand specialist sounds like he is just turfing you back to neurology because s/he is done, not because there is reason to believe you have a neuro disorder. It's a common thing to do.

Why are you on blood thinners? I only ask because if you have AF, that can cause palpitation-like symptoms as you mention -- your heart jumps, your back or chest twitch. If so, you might need a medication adjustment. If not, there is no harm in getting an EKG just in case, if not recent.

You're right, six months in, a clean EMG, a clean specialty exam, and your symptoms lead us away from ALS. Re your fine motor skills in your hands, you could try some of the carpal tunnel exercises you can find on YouTube. Sometimes our hands just get overused, esp. if you do a lot of puzzles or close work, and need stretching. Re twitching, shaking and cramps, renewed focus on sleep, stress, diet, hydration and some kind of bodywork that elongates your muscles, from ballet to swimming, can all be worthwhile. What you describe very often is your body banging on the door and telling you that it needs some TLC.

Best,
Laurie
 
Hey guys, thank you for responding. I appreciate it. I have been working on a lot more self care focusing on eating right, getting some exercise and focusing on being healthy overall. This helps because every time I complete a workout I tell myself I have obviously accomplished something that I wouldn't be able to if I had some sort of atrophy or dystrophy. I am also starting back at therapy Monday. I recognize that I at least need someone to talk to about my fears until I find a diagnosis.

As for the blood thinners I have Factor V and have a history of blood clots so after my last blood clot they just decided it was something I should be on going forward to prevent them. I actually had an ultra sound not long ago and there is no current blood clots, I had both legs done just to make sure since that is where I have been cramping a lot.

I realize that this is not the forum for me because I clearly dont have ALS. And want to thank you all for the support you have offered me while going through this process. It has been incredibly reassuring and has helped me to get through some of the dark times. I wont post again, but just wanted to tell you how grateful I am for your responses. I wish you guys the best.
 
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