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alex scared

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dorchester
hi all . . Finally after 5 months i got another neuro appointment . I have only previously seen him once before. (although he has called ) . The first time i was seen which was in the first week in august i only had breathing problems . . Now unfortunatly i gotta few more things for him to see . . Tongue twitchin word starting to become to formulate etc . . Gotta say i a bit nervous but hopeful of some answers . Obviously i not expecting any sort of diagnoses tomor but with the other stuff happening since i last saw him i would like to ark if i am within my rights to ask for emg. . ? Obviously i totally trust and have respect for the neuro judgement but i see some sort of investigation that can lead to findin out what is happening as opposed to another physical . . Your wise opinions would be welcome . . Thank you all for reading . . God bless . Alex
 
Alex- you always have a right to ask for an EMG or any other test you feel necessary.
They may not DO it, or think you have symptoms that warrant one, but you have the right to ask for it.
Im not sure if what you are experiencing warrants an EMG, but I understand that you are feeling nervous and that
is understandable. I will keep you in my thoughts tomorrow. Good luck
 
wishing you the best
 
I wish you the best! I'll pray for you. Best Gustav.
 
Hope all goes well. Thinking of you, and hope you get some idea of whats going on
Aly
 
hi all . . Firstly thank you all for your wonderful messages of support and good wishes . . Really very kind . Ok an update . . . He sat me down and asked me to describe the different symptoms that have developed . . I told him i felt that i was struggling to formulate speech,almost as though my tongue was not as nimble when talking . . As a result i was slurring my words . . Also my tongue had started to switch . . My breathing had slowly got more uncomfortable too since last seeing him . . . He listened very attentively and then began an examination . . The strength test was passed easily . . Standing on tip toes and heels was easily passed too . . All reflexes were norma and babinski was absent. . All good so far. . He then looked at my tongue and confirmed the presence of tongue fasciculation and after testing the strength of the tongue did say that there is a potential issue there . . He also agree that my speech is slightly slurring . . When all the examination was complete he said that he is gonna order tests for my tongue nerves which i assume means an emg . . Also a swallowing test has been ordered . . And lastly a brain scan i assume to see if there are other reasons this is happening . . He told me that he still does not believe that this is mnd /als which i take heart in but did unerr my concerns . . I am to have all this done in the next 8 weeks and see him again in early march . . All in all he was kind considerate and i believe did all he could to help me . . Thank you all for reading your opinion would be welcome . . God bless my friends . . Alex
 
Dear Alex,
So very glad he doesn't find reason to think MND, and also that you are confident in him. I have NO idea what is going on, but am praying for the testing and resolving of this diagnosis... and for a treatable problem.
Hugs,
Ann
 
Hopefully once they do the tests on your tongue they can figure out what is going on. Glad that he does not believe it to be ALS. Good luck!
 
Hi Alex, I know we havnt spoke any on here, but I have read several of your posts. I was wondering if the neuro you saw yesterday, did he happen to say anything about your breathing issues that you have had trouble with? Or is this something that has improved for you any?

As with others, I was happy to hear that he still doesnt suspect MND:D

Hope you dont mind me asking you those couple of questions.

Take care Alex


Robynn:D
 
hi again all . . Ted . . Thank you for you kind words . . The neuro did say that something is evidently happening but at this time he not sure what . . I asked him why he was pointing away from a mnd hip answer was because of my age (34 ) onset of symptoms , reflexes were spot on and also the fact that in every limb i am as strong as ever . . No deterioration in the 5 months since he last saw me . . Clinically he said i was miles away from mnd als . . . . . Anne hi my friend thank you too for your best wishes and thoughts . . I have faith in this guy because quite frankly he gonna know a lot more than me about what happening . . As wright has said before this guy will have gone through rigerous training to get where he is . . He was also a compassionateand happy to listen . . Robyn . . Hi hope you are well . . If you like i will pm you . . , god bless . . Alex
 
Hi Alex,
I have been reading your posts and I'm happy that your neuro thinks it is not
ALS. I hope the other tests are scheduled soon and you can have some piece of mind.
I am praying for a benign diagnosed for you.
bessings, at
 
It looks like really good news to me...

:)
 
Alex,

It goes without saying that it is wonderful that MND is not suspected. However, you still should pursue finding the cause and treatment for your problems.

I'm glad you were able to get back in to see this doctor, and that you are happy with him. A suggestion is to ask him to order not only the regular MRI but also one specific to just the brain stem. If something is going on, perhaps even separately from your breathing issues, just a general brain MRI is not specific enough. I don't know the technical name, but my doctor called it a "coned down" mri. I believe it was done with and without contrast. Can't remember for sure.
 
Alex, please be quite thankful that he is not suggesting ALS. But age really isn't a given as my husband is only 35 and is quickly progressing with ALS. Get all the tests you can and they should even further rule out the worst and maybe key in on what the actual problem is. Be persistent and insist on them figuring out what is wrong. As the old saying goes, "The squeaky wheel gets the oil."
 
lets hope he has something in mind we dont know about
 
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