exploringexistence
Well-known member
Well I just got back from my neuro visit and all in all, it was okay. I was thinking of backing out this morning I was so scared. I barely slept last night. I wasn't crazy about the neuro but what can you do. I had my appointment in a hospital and I remarked to my mom (who came along for the ride), that this was probably for the best for when I have a heart attack in there if I get bad news. When we were parking our car in front, there were ambulances at the ER doors and both of them said ALS in huge letters. 
I have no clue what it stood for but I was thinking it was a bad omen and almost wanted to run the hell out of there. The place was kind of disorganized. They couldn't find my referral or the letter my doctor said she was sending. It either was a mistake on their part or at my other doctor's office. I had to wait in the waiting room awhile and my twitches came out in full force, right bicep, tongue, and thumb went crazy. I guess that was good since I got to show the doctor. The nurse brought me to the room and she wasn't the brightest ray of sunshine either. Since she had no info on me, she had to take down all my symptoms and she gives me this sad look and says, "Well it sounds bad but you never know it could still be nothing." Then the doctor comes in and asks what has been going on so I start telling him about all my twitching. He asked if he could see any twitches now so I showed him. He spent the longest time looking at my thumb which was shaking so bad that I could not keep it still. I'm sitting there thinking, omg it's *** and he can tell already. Then he held it in his hand and examined it. So then he tells me to continue telling him my symptoms and I tell him how I googled and found *** sites and I'm scared I have it. He goes, "Oh no way. You don't have ***." So my mom says, "You can tell just by looking at her?" Then he says, "yeah I can but I'll examine her after too." He also said that benign twitches are very different than *** twitches. He said they look different but he wouldn't tell me how. I guess that was a good thing. Then he started to get a bit depressing and scaring the crap out of me. He goes, "Well you know *** has no treatment so it doesn't really matter whether we catch it early or not or six months down the line." So I'm like, WTH?!?! So I said, "You know you are scaring me so bad right now. Are you saying I might have it or not? Because I would want to know so I could expect what's coming." He says, "No you don't have it." I guess he was just trying to say that it's pointless to worry or something but what an idiot! Then he did all the strength tests: walking on heels, toes, getting out of chair, checked my arm strength. Then he checked all my reflexes and said they were perfect. We did discuss an EMG and he told me he'd send me for one but he's 100% certain it will come up clean. For now I decided against it, but we'll see. I'm going to try to do without it. He does think I suffer from ET (essential tremor) though and precribed some meds for it. He thinks my slurring issues are anxiety induced. He also thinks I should see a therapist to deal with my anxiety/OCD and also my grief over my loved ones. I have to see him again in a month.He did reiterate how rare *** is. He said the last person he diagnosed was a year and a half ago. He also said *** is almost unheard of in the young unless there is some sort of family history.He did tell me this story to show me how the mind can really do a number on you. He said he had a woman in there last week, 100% convinced she was in the advanced stages of MS. She came in a wheelchair and everything. They found out it was all in her mind.Thanks again for the reassurances and prayers guys. They meant a lot because I was so freaked out by this. I know I am still going to have moments where I fall back into the worry trap, had a brief one when I was eating again but I am going to do my best to assure myself I am fine.
I have no clue what it stood for but I was thinking it was a bad omen and almost wanted to run the hell out of there. The place was kind of disorganized. They couldn't find my referral or the letter my doctor said she was sending. It either was a mistake on their part or at my other doctor's office. I had to wait in the waiting room awhile and my twitches came out in full force, right bicep, tongue, and thumb went crazy. I guess that was good since I got to show the doctor. The nurse brought me to the room and she wasn't the brightest ray of sunshine either. Since she had no info on me, she had to take down all my symptoms and she gives me this sad look and says, "Well it sounds bad but you never know it could still be nothing." Then the doctor comes in and asks what has been going on so I start telling him about all my twitching. He asked if he could see any twitches now so I showed him. He spent the longest time looking at my thumb which was shaking so bad that I could not keep it still. I'm sitting there thinking, omg it's *** and he can tell already. Then he held it in his hand and examined it. So then he tells me to continue telling him my symptoms and I tell him how I googled and found *** sites and I'm scared I have it. He goes, "Oh no way. You don't have ***." So my mom says, "You can tell just by looking at her?" Then he says, "yeah I can but I'll examine her after too." He also said that benign twitches are very different than *** twitches. He said they look different but he wouldn't tell me how. I guess that was a good thing. Then he started to get a bit depressing and scaring the crap out of me. He goes, "Well you know *** has no treatment so it doesn't really matter whether we catch it early or not or six months down the line." So I'm like, WTH?!?! So I said, "You know you are scaring me so bad right now. Are you saying I might have it or not? Because I would want to know so I could expect what's coming." He says, "No you don't have it." I guess he was just trying to say that it's pointless to worry or something but what an idiot! Then he did all the strength tests: walking on heels, toes, getting out of chair, checked my arm strength. Then he checked all my reflexes and said they were perfect. We did discuss an EMG and he told me he'd send me for one but he's 100% certain it will come up clean. For now I decided against it, but we'll see. I'm going to try to do without it. He does think I suffer from ET (essential tremor) though and precribed some meds for it. He thinks my slurring issues are anxiety induced. He also thinks I should see a therapist to deal with my anxiety/OCD and also my grief over my loved ones. I have to see him again in a month.He did reiterate how rare *** is. He said the last person he diagnosed was a year and a half ago. He also said *** is almost unheard of in the young unless there is some sort of family history.He did tell me this story to show me how the mind can really do a number on you. He said he had a woman in there last week, 100% convinced she was in the advanced stages of MS. She came in a wheelchair and everything. They found out it was all in her mind.Thanks again for the reassurances and prayers guys. They meant a lot because I was so freaked out by this. I know I am still going to have moments where I fall back into the worry trap, had a brief one when I was eating again but I am going to do my best to assure myself I am fine.
Joanne, I am really going to try to do without the EMG for now but we'll see. I was already having reservations again today that I should have just had it done anyway. I'm such a doubter. Hopefully the therapist I go to can help me on that.Swift_TaySwift20, oh that is what it stands for! I always think everything must be a bad sign. 
Sandra, my prayers are with you. You'll be fine