Mnd

[sunnydays79]

My dad was diagnosed with MND earlier this month.
It all started towards the end of last year, we started to notice his speech was slurring, it became worse over time. He was still able to speak, it just took us longer to understand what he was saying, he also started to lose weight. We all encouraged him to go to his GP but my dad is stubborn, he didn't want to go (he was too scared). Eventually we made him visit the Doctor, who said he couldn't see any thing wrong with his throat, no lumps tumors etc.. After a few weeks the difficulty in swallowing and the slurred speech became worse he went back to the doctor who suggested a CT scan, which he had, the results came clear. He had his appointment with the Neurologist who told him "you have MND" when asked how long do I have left the Doctor said 2-3 years!
Since then it has been very upsetting to see dad deal with this, its very difficult to know what to expect next as we haven't really been told much.

 

[Alyoop]

Sunnydays. I am so very sorry that your dad has MND. If you have any questions at all, just ask here. there is heaps of information, experience and love. There are others from UK here as well. Its a terrible shock to have to deal with this illness, hard on both your dad and family.
hugs to you all
Aly

 

[sunnydays79]

I have read lots of other threads on this forum and everyone talks about how many tests they had to get diagnosed, with only a CT scan which came back clear its difficult to understand how they diagnosed MND and gave 2-3 years..

 

[Jellycat]

Sunnydays, I'm sorry to hear your news. The first while after diagnosis can be quite shattering and the mind can go in all sorts of directions wondering what will happen next. As to lots of tests, remember that your dad can go to have a second opinion from another neurologist. As to what will happen next some pals want to know that, others not. Noone will be able to tell you exactly how things will work out but a general sketch of the possibilities can be helpful in planning. If your neurologist doesn't give you much on that front, perhaps the mnda could be helpful.

 

[EGBAR]

Sunnydays,I too am sorry that you and your family or anyone for that matter has to deal with this. I was diagnosed less than a month ago. It was shattering, I thought I was going to loose my mind. Sometimes I still do. This site has helped me so much to try and get my arms around this and to deal with the hand that has been dealt. My wife is a Doctor, she has often said that no one can give you a timeframe, God doesnt work on schedule. You will get things under control just give it time and use this site and the people here to help. I dont know what I would have done if I didnt find this site that is why I picked the name EGBAR (Everything is going to be all right), and it will. I will be thinking of you and your Dad.

 

[Ms. Pie]

Hi Sunnydays! I'm sorry you and your family have to deal with this. Get your Dad registered with ALSA and then find your local Chapter. They will help you all the way through this. We will too.
Love,
Marta

 

[Chris_b]

Hi Sunnydays, sorry to hear about your Dad. Its very difficult to get your head round but believe it or not you do seem to come to terms with it all. I think its becoming a lot more common for MND diagnosis to be done quite quickly (i was done and dusted within a month ish) maybe there is a lot more known about it now or possibly a lot more very good neurologists.
Anyhow there are plenty of great people here to talk to

Chris.

 

[kmendsley]

Sunnydays, sorry to hear of your dad's diagnosis. It is weird that the neuro diagnosed it so quickly without running an EMG or NCV. It could be that your dad is so 'textbook' in his symptoms that they he presented perfectly in the clinical sense with UMN and LMN's and the dr. didn't want to put him through these tests...believe me they aren't the most comfortable in the world.

You do always have the option of seeking a second opinion...every health insurance allows it. So if you are concerned that maybe the first neuro wasn't quite as thorough as you like, seek a second opinion...if you can try to find an ALS clinic near you to get tested since the dr. see and test for ALS everyday they will be more thourough in their checks.

Sorry again for your dad, but welcome. Please feel free to ask as many questions/concerns as you want.

Kell Bell

 

[IluvNY]

Sunny, sorry to hear about your dad. My boyfriend was also recently diagnosed, I believe, somewhat quickly. We are still trying to come to terms with this horrible diagnosis and the progression of symptoms. He has an appointment on 7/22 to discuss follow-up treatment and trial meds. He will not participate in the trails because research shows very little change in symptoms. The neurologist made a very strange and perhaps (untrue) statement...he said that sometimes people with his symptoms (muscle weakness) get better because something "switches" on and the immune system stops attacking itself. Really? I pray.