Annony12
New member
- Joined
- Jan 13, 2020
- Messages
- 3
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- UT
- City
- 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.
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.