Back from neuro

BFS Online Support Group

Moderators: JohnV, Arron, garym

Back from neuro

Postby Bibi on January 28th, 2015, 12:05 pm

Hi
Now i am back from neuro and he saw The video i have made with my foot twitching All The time. He Said , yes it is definately fascikulations it speak for it selves. He Said that time is The only thing that Can show if it is something bad.he Would not send me for tests , he doesent Think that more test Can find The explanation. I told him about my uncomfortable feeling in tounge and had to ask him to take A look at it . He looked and asked me to push with my tounge and Said that i have not Bulbar signs. He also checked my reflexes and Said They where brisk but he thought that They may have always been brisk.
Again he Said that only time Can show and told me to come back 27 May . And told me to live my live and go on with my activitys ( i told him about The dancing )
I dont feel Well about this visit , i really need A doctor to say that i definately dont have *** i feel so bad about this waiting for next appointment and waiting to see if anything shows up.
I am glad that he didnt Found Bulbar signs but, i dont feel safe.
Bibi

Sendt fra min iPad
Bibi
Selfless giver of time
Selfless giver of time
 
Posts: 152
Joined: May 16th, 2014, 5:57 pm

Re: Back from neuro

Postby Buzznerd123 on January 28th, 2015, 12:13 pm

.
Last edited by Buzznerd123 on May 1st, 2016, 11:38 am, edited 1 time in total.
User avatar
Buzznerd123
Selfless giver of time
Selfless giver of time
 
Posts: 114
Joined: January 5th, 2014, 2:37 pm

Re: Back from neuro

Postby German2 on January 30th, 2015, 2:20 pm

I really can understand how hard this is for you...did the doctor tell you how long you have to wait, then? I experienced in the mnd ambulance they told me...you don't have mnd. Come back in 6 or 12 month...same effect. Why coming back if you don't have anything.
German
German2
Saint
Saint
 
Posts: 549
Joined: March 3rd, 2014, 9:51 am

Re: Back from neuro

Postby Bibi on January 30th, 2015, 3:01 pm

Thanks for responding !
I am really scared about this , cant imagine that this is benign and fear that is what The neuro thinks too. He Said usually They follow You for A year. But i hate this arrogance about it here . It is like he say , yes You have symptomes off A dreadfull illness but come on , go on , live your live , i cant give answers . I realize he doesnt have The answer but he could A least make A thorough clinical , it Would make me feel more safe if it was clean , even if i know That new symptomes could come tomorrow. But i felt so bad after that visit so now i really thinks that this Will be bad.
Bibi
Selfless giver of time
Selfless giver of time
 
Posts: 152
Joined: May 16th, 2014, 5:57 pm

Re: Back from neuro

Postby leaflea on January 30th, 2015, 3:29 pm

Bibi. I know how you feel. I do. I have so many issues and yes he was arrogant. My neuro a couple weeks ago gave the lamest clinical!! And seemed to be annoyed with me for no reason except I had many questions but it is not as though I've been pestering him. It is my first time back in a year. He tested my knee reflexes while feet flat on the floor. It was so totally unsatisfying. He said I don't have bulbar signs and ssked why in the world is worry about hyper salivation. As if I'm dumb. He then said he'd give me an EMG alrhough I wasn't asking for one but he implied he was going to do it for my reassurance. He joked he would make me scream. This was not one bit funny. He said he would do one limb and that if it was clean he would "guarantee" I will never have als in my life. Again, I wasn't asking for that. A false promise doesn't make me trust him any more. I hate this. And I understand. I do believe we will both be okay. First time I saw him he acted as though I was the first person he has ever seen with these symptoms. And he was totally puzzled. This time he acted as though this is very common and he is totally annoyed with people like me. It was not fair. Neither of these responses were helpful to me at all.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
User avatar
leaflea
Saint
Saint
 
Posts: 523
Joined: November 12th, 2013, 2:06 pm
Location: Minneapolis, MN

Re: Back from neuro

Postby Bibi on January 30th, 2015, 4:51 pm

Leflea ,,thank You for answering. I know we have Many things in Common and i hope things Will turn out good for both off us. I am glad for this group and FB too ,this is my " lifeline" i have been in A,very bad mood,since wednesday , i really Got The impression that he thinks i,have *** .i see A psykologist now , it is very hard to Cope with this . It is like mentally torture . When are You going to have EMG ?
Bibi
Selfless giver of time
Selfless giver of time
 
Posts: 152
Joined: May 16th, 2014, 5:57 pm

Re: Back from neuro

Postby leaflea on January 30th, 2015, 5:41 pm

We got mixed messages from these guys. I did fully get that impression and then I didn't at the same time. It was a mix of his demeanor and his words. I could drive myself crazy going over every word and facial expression. It seemed almost he was toying with me. EMG was 2/11. He wanted to do it himself. I cancelled and am going to mayo clinic instead. Top hospital in the world is 1.5 hours from me and they actually care about bfs. I am Leanne on the FB page.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
User avatar
leaflea
Saint
Saint
 
Posts: 523
Joined: November 12th, 2013, 2:06 pm
Location: Minneapolis, MN

Re: Back from neuro

Postby Bibi on January 30th, 2015, 6:34 pm

leaflea wrote:We got mixed messages from these guys. I did fully get that impression and then I didn't at the same time. It was a mix of his demeanor and his words. I could drive myself crazy going over every word and facial expression. It seemed almost he was toying with me. EMG was 2/11. He wanted to do it himself. I cancelled and am going to mayo clinic instead. Top hospital in the world is 1.5 hours from me and they actually care about bfs. I am Leanne on the FB page.


I have read The others stories from Mayo , and i wish You good luck ! Good that You cancelled The other appointment . I hope that Mayo Will give You clear answer as They did with The other fellows .
Bibi
Selfless giver of time
Selfless giver of time
 
Posts: 152
Joined: May 16th, 2014, 5:57 pm

Re: Back from neuro

Postby leaflea on January 30th, 2015, 9:43 pm

I was doing well mentally accepting this before this appointment. I am now sliding backwards. Into a dark place again. He recommended I start medication and acted as though I'm crazy when he said it. It's like he started with ridicule but the more he heard and observed decided to test. I have Paraneoplastic panel also which was sent out to Mayo. This increases my anxiety as well. Waiting. Mayo may be months away. He then added he starts his patients with diseases on them too. So again a bit if a mixed message that leaves questions. He was insulting and cruel really. That's why I say screw em Bibi. Truthfully I find this all hard to even write about it talk about. It seems more real than if I'm quiet it is more of a nightmare. This is why I didnt say more earlier. What would help now is if anybody also here has stories of going to a neuro and having mixed results/message and they are still just fine. anyone? My friend who was with me asked straight out if he was doing this test EMG for my reassurance or because he had concerns. He said sometimes they evolve :-( But that if it is clean he guarantees I'll never have ALS. What an idiot. I didn't ask him for the test, and I sure didn't ask him to make a guarantee he cannot keep. I'd have more faith if he said I guarntee you don't have it now and this will never turn into that. That, I would happily buy and leave his store.
Last edited by leaflea on February 2nd, 2015, 1:00 pm, edited 1 time in total.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
User avatar
leaflea
Saint
Saint
 
Posts: 523
Joined: November 12th, 2013, 2:06 pm
Location: Minneapolis, MN

Re: Back from neuro

Postby Bibi on February 1st, 2015, 1:08 pm

Leflea , thank You for telling your history . I feel exactly The same about talking and writing about this and The fact that i saw my foot fascikulate so much in my video makes it more Real , i cant ignore it as i Tried too , and The neuros comment :" it speaks for it selves " makes me sick with worry now . I am so scared that this is Bulbar onset and i am in A Dark place too. I dont know if i have fascikulations in my tounge , i dont dare too look.
I hope that You Will not have too wait to long for The Mayo appointment.
Bibi
Selfless giver of time
Selfless giver of time
 
Posts: 152
Joined: May 16th, 2014, 5:57 pm

Re: Back from neuro

Postby leaflea on February 2nd, 2015, 12:58 pm

Tell yourself that video of your foot does not change a thing. You knew you twitch, you told your doctor you twitch and hope he believes you with your video. We all twitch or we wouldn't be on this board. The fact that you have evidence and your doctor has evidence of your twitching does not change anything. I have not looked at my tongue. I refuse. I have a lot of extra salivation, I can feel it being produced. Sometimes I seem to hesitate before swallowing, but this could be hyper awareness. Same with slurring. I have kept track of thsee things and both have been happening without becoming much if any worse since summer - a good 6-8 months. I had the stomach flu right after that neuro appointment that made me feel worse, and since then I had a painful esophageal spasm while eating frozen yogurt. I have had the spasms before while eating a hard boiled egg or baked potato, but not recenly and not lasting 1.5 hours. 10 minutes maybe was the longest in the past. It confirmed to me that I AM crazy because I know any rational person would go to the hospital with that kind of pain!! I read it can be due to GERD/irritated nerves and stress so I'm going with that. Also read somewhere it is evidence of NM dysfunction. Don't need that! I'm choosing to believe the first option. Since then, I have had the globus sensation for a few days! Started after swallowing a large pill that did not feel it made its way down. It never ends. I know it is common with bfs, but it is new to me, one of the few bfs things I didn't have. I'm sure I can't call it quits until I have been struck by every last possible reported symptom reported by our peers here. I have been under much more stress than just the bfs and disturbing doctor visit in my life lately, so much of this can be attributed to stress. Hang in there, we will be fine! Stay busy and keep dancing away. We have to decide we will be okay no matter what is the outcome and make peace with that. When I hear of a tragedy with a young person, I remind myself no one promised me a long life, it is not owed to me. I will be okay. It is easier if we submit to this will and accept rather than fight. When we fight, we get all into the "fight or flight" mode and the stress horomones start doing their damage that I believe caused this whole mess in the first place.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
User avatar
leaflea
Saint
Saint
 
Posts: 523
Joined: November 12th, 2013, 2:06 pm
Location: Minneapolis, MN

Re: Back from neuro

Postby Bibi on February 2nd, 2015, 3:22 pm

Leflea , You describe Many off my thoughts and You are Right about we are not promised A long life and we have to take things as They are. But it is so much easier Said than done , and as new scary symptomes appears i Think it becomes Harder with time. I have Read A post from twitchydoc and i Think he describes my issue with my voice and need off clearing My throat. And as he say together with widespread fascikulations .... Everyday i do what i have to , work , Beeing with friends and family , dancing , but this Big worry is with me every second. In any Way this is maybe The Best time , but it is hard to really enjoy things .
Bibi
Selfless giver of time
Selfless giver of time
 
Posts: 152
Joined: May 16th, 2014, 5:57 pm

Re: Back from neuro

Postby Bibi on February 2nd, 2015, 3:50 pm

About your swallowing trouble , it could be acid from your stomach irritating your esophagal , it happend to my son after A stomach flu and he had to take medicin for it and it went away after 14 days.
Bibi
Selfless giver of time
Selfless giver of time
 
Posts: 152
Joined: May 16th, 2014, 5:57 pm

Re: Back from neuro

Sponsor

Sponsor
 


Return to The Support Group

Who is online

Users browsing this forum: No registered users and 11 guests