MND bulbar onset experience

[Mmsm]

Diagnostic 29/06/21 MND bulbar onset
My symptoms start first week April this year one week after the first jab for covid. Less 3 months I can't eat, drink and almost not talk, losted more than 10kg weight. Struggling carry my shop bags. They say my life will be finished soon (with a different nice words of course).
Because of the rapid progression I'm feeling about my illness.
The more I read about the subject the more confused I get. I feel lost between doubt and/or lack of knowledge about all this. I try to understand or perhaps identify similarities between other people who also go beyond this stage. I know that as with everything in life, the way each one overcomes the symptoms is different. We are different, body and mind. But there are always some similarities that help us to realize that after all we are not alone in this fight. Understanding the experience of each one of us and knowing how each one tries to overcome this, to get new ideas and/or concepts that give us a light at the end of the tunnel. If possible, I want you to tell me what symptoms you are facing and how they have evolved. What do you do to make your life easier and mainly how are you dealing with the disease (mentally).
ADM. If this post isn't allowed please delete.

[matthew55]

Bulbar here too. Jan 2022 is my three year anniversary. Back then voice changed move on to today and my voice has completely gone. If life only gives you lemons make lemonade 😁🤗😘😉xx

[EvelynMW]

Hello Mmsm . I understand how confusing everything is; some of us have slow progression, and some fast. However, it can be that after a quick downhill , you will stabilise for years. No-one can tell you their own future, let alone someone elses. Ask your quesions and several people will probably reply.

[Heather R]

Sympathies, there is so much to learn about mnd, and you have only had a short time to look into it all. You are certainly not on your own in this forum, but as people have said, we are all different, and speed varies so much and can alter from faster to slower or vice versa. I find reading about other's experience on here, helps me prepare for possible challenges as they arise, whilst knowing that my path may be different. I am ALS bulbar onset, diagnosed July last year. I have a PEG inserted but trying to hang on to eating for as long as I can, but choking on food and drink more and more. My speech is becoming more unintelligible, so am looking to other ways of communicating. Step at a time. Hope you can find some comfort and knowledge from this forum. Wishing you all the best, Heather xx

[Mmsm]

matthew55
Thank you for share your experience 😊
I like lemons 😅

[Mmsm]

Heather R thank you for share your experience with me.
This is very new for me and admitted scares as well. All my life I'm a realistic person.
try understand a little more about others experiences give me some "comfort" maybe this sounds wrong. I know we are not alone but I never met nobody in my life with MND. This forum its amazing 😊

[Mmsm]

Hi. All. 3 days ago I put the RIG tube. However I am still in the hospital. What I want to know is whether anyone experienced blurry vision after the procedure? I use an app to communicate and now I don't see the letters to write. Talking is a waste of time because no one understands me 😔

[Mary C]

Hi Mmm
I had a RIG fitted about 6-7weeks ago and didn’t experience any vision loss.I did get an infection high has since been treated.
Have you been seen by the Speech and language team while you are in hospital???Could they help with communication problem because of eye sight.
Also what is the consultant thinking the blurry eyes issue is due to?
There are articles on MND association sites that might be helpful to you.
Hope you get some answers soon.
Best wishes
Mary

[matthew55]

I have blurry eyes first thing in the morning. They clear within an hour 👍🤗😍😘xx

[Mmsm]

Mary C C hi, I sent a email to the speach therapy just waiting for her answer.
I m waiting for the consultant come to see me so I can tell him again. The others doctors said maybe the medication because I take a lot medication after the RIG proceed.

[Mmsm]

matthew55 this happened to me one day after the proceed and after they give all medication.
Every time I lost vision (blurry) for around two hours and returned slowly but not 100%.. This is now 3rd day off this.

[matthew55]

What is a virtue?

[Mary C]

Hi Mmsm,
There should be a speech therapist in the hospital you are in so ward should be able to ring and get them to see you before you leave hospital.

Do you need a medication review while in hospital.?

When my RIG procedure took place I was on a drip for vitamins and several medications which have since been discontinued.

My advise would be not to be discharged without a clear plan of who is going to assess your vision issue as a matter of urgency .Particularly as this problem came on post RIG..I was told of side effects possible post RIG but vision was not mentioned.
Do you have any support who along with yourself can push to get some action?..
You can feel vulnerable in hospital with communication issues without having the additional problem with your vision.
Dont be fobbed off and good luck
Regards
Mary

[Gordan1111]

Hi mmsm. As Mary says, try not to let them fob you of before leave hosp. See what speech therapist and consultant say. Can you also email mnd connect and ask them if they can suggest anything?x

[Lynne K]

Hi Mmsm, I hope that your vision is sorted out soon. Mary’s suggestion would be good. Love Lynne x