Newly diagnosed, processing, looking for others experiences

[fo mnd slow pro]

I'm sorry about the confusion I caused, I considered that being diagnosed with this meant that there is a standard set of steps taken. So the questions took me by surprise. I didn't even know the difference between and EMG and an NCS

I don't have access to my records just yet, will look to get it and post when I have it.

I can says to from recollection and knowing what I know now:

2023 September went to my first neuro appointment for left shoulder and arm atrophy and tingling burning feeling in my left arm, had an EMG NCS, got sent to do a neck MRI.

A few months later (almost a year) I managed to go back for my follow-up with the neck MRI.
By this time the burning and numbness extended to my right arm, and I had tingly feeling in my toes. I was worried I had a pinched something that will leave permanent damage
The MRI (attached) showed only mild changes, the neurologist told be they don't account for my symptoms.
I got another EMG done and the neurologist told me she will refer me to another neurologist that can help me out with this (she said it was worse than the previous one).
I get an appointment in December 2024, where I have another exam, I get an EMG on both my arms, don't remember getting it in my legs, an NCS on arms and legs,sent to do some blood tests and another MRI to look for a tumor. He told me "it's not ALS".

Went back on February 21st and he told me all the tests came back Negative, including the MRI. He did another quick check on me (just a physical) and said "I think you have Focal Motor Neuron Disease, it's slow progression, but it's progressing. I'll keep seeing you, we can talk if you need to, and I'll book you for another flexion neck MRI to check for Hirayama variant, but you're not of Asian descent so it's unlikely it's that"

I thanked him and walked out of his office not knowing I was just handed a death sentence.
When I researched it, well, I was shocked to say the least.
I sent him one mail asking for anymore details what does it mean, what does slow progression mean, what do I do. And a he said was "there is nothing we can do to stop the progression as far as we know. Stay active but don't overexercise weak muscles. I've already booked the MRI and you'll receive a message for our appointment in August".

After that I started researching like crazy and looking for signs, that's how I noticed my left calf seemingly being affected.

I hope I did a better job eliminating the confusion, I will try to get all the info from all my exams.

Ty everyone for your replies.

 

[Nikki J]

Thank you for all the detail.

I noticed that after your last emg you were specifically told it is not ALS. So the situation is confusing that you were then told he THINKS it is focal mnd. I don’t believe that translates to you have als but it is really really important for you to get clarity on exactly what he meant and what your prognosis is I hope you can speak with him soon but in the meantime it is good you are working on getting records. If he didn’t prescribe riluzole that would be a good sign

 

[fo mnd slow pro]

I'm sorry, I don't know if there is a difference between the two, from what I found MND is an umbrella term for the diseases which include ALS. And the prognosis is not that different. Am I barking up the wrong tree?

Ty very much

 

[fo mnd slow pro]

But next appointment is at the ALS clinic, so I'm not sure if there is any uncertainty on the diagnosis or just incredibly horrible communication skills.

 

[Nikki J]

It is a little confusing. ALS is an MND but there are other MNDs that are not ALS. In the US and many other countries the doctors differentiate and say you haveALS, PLS etc. in the UK and other Anglo countries they tend to use MND as an all encompassing term though in the privacy of the exam room even there the doctors will often say which MND.

Focal MND is not a common term either so that makes me wonder exactly what they meant.

Re ALS clinic my clinic sees other MNDs besides ALS. The previsit questionnaire always asks what disease are you here for and the choices are ALS, PLS or other disease. I go to a very large hospital that has specialists and clinics for most things but even there the ALS clinic sees other MNDs besides ALS

As I said you urgently need clarity on your diagnosis and prognosis. I hope you can get it soon

 

[fo mnd slow pro]

I plan to get in touch with my neurologist first thing Monday!

In the end, would a different MND change prognosis?

Ty very much Nikki, it feels really good to be able to talk to people that can bring so much information.

I've had so much anxiety, it's been crippling for both me and my wife. You have no idea how much this helps!

 

[Nikki J]

Yes different mnds have different courses. Also being as functional as you are after all these years even if it turns out to be ALS it seems your version would be ultra slow

 

[Meyermihi]

Hi,
With me it things seem a bit similar... I have been diagnosed with MND 6 years ago. Since then I have been anticipating every day for things to turn worse but they did not, except from prersistant fasciculations in my calves and some relatively mild atrophies. From what I have researched, while ALS is the most common form of MND (80% of cases), there are many sub-types too. Many of those are far less aggressive and very slow to progress, even coming to a complete halt for years. You are young and seem to have an active life style, which is also good and predictor for slow progression. Please do not worry too much, if things go bad nothing can be done anyway, but this time may and hopfully will never come.

 

[fo mnd slow pro]

Thank you Meyermihi for sharing!

I spoke to my Neurologist today, he apologized for the lack of info and was adamant he didn't consider I was in any danger, hence the 6 month check in.
I was told I might have some disability (left arm would get weaker, might spread to right arm etc) from this but considering the very slow progression and very focal presentation he doesn't believe that will go to a point where this could affect my life expectency.
He also told me that my NCS came out good in December , so symptoms in my left calf don't make sense.

After the shock of this past week I feel numbed by this news and there is a lingering feeling of dread and doom looming right around the corner, but time will make it better!

I certainly hope he wasn't just trying to be nice to me.

I'm still dealing with anxiety and I feel like my speech, is affected, my swallowing is affected, me left leg is weak and getting weaker. I'm hoping these will get better with time as well.

I want to thank everyone that answered. You people are absolutely amazing. I was drowning in dispair, and all your knowledge and sharing helped me navigate through the darkest waters.

 

[Nikki J]

I am glad you got to speak to him and saying he doesn’t think it will affect your life expectancy is excellent news. Doctors don’t lie to make you feel better. Ultimately it would damage your relationship as trust would be broken. It also imperils their license and opens them to litigation.

 

[ljlorie]

Hi I have bulbar als and cannot speak or eat......I still continue to go to work every day full time....my coworkers are fully supportive......I k ow it's important to keep living your life...the only changes I have made in mine is we travel more....k owing we cannot put it off I take my grown children and husband and sometimes my mom and we travel...weather it's just a road trip...this keeps me focused on the next adventure....

 

[Daughter416]

I like your help TLarri…need it right now. Dad just diagnosed Tuesday. Thinking about you and your wife.

 

[fo mnd slow pro]

Ty ljlorie, for sharing!

Sorry to hear about your father Daughter416!

I wasn't able to reply since I've had a death in the family and was gone for the last weeks (when it rains it pours!)

I've still been fighting a lot with anxiety and I'd like to give some updates just to document it for other people going through the same thing:

As I mentioned earlier, i was convinced that my symptoms have spread to bulbar, so i started frantically doing a lot of self testing (seeing how many dry swallows i could do in a row, eating dry biscuits).

At one point i actually felt like i had issues swallowing and i actually felt water go down the wrong way, i also felt water come up my nose a couple of times. My voice was hoarse and i constantly felt like there was something in my throat.

My panic was and an all time high.

I then took some Advil and noticed that it was getting better. Turns out i managed irritate my adams apple with a collar i bought from the pharmacy which slightly inflamed it and gave me these issues. it's now getting better so that is one of the anxiety checklist.

Right now I'm having anxiety about the spread - i feel a burning/numbing sensation in multiple muscles, sometimes after use. Is that something that happens with MND affected muscles? Internet says it's due to the muscles loosing their neurons and that is causing the burning.

Anyone heard of anything similar, or is it another episode my head is creating so i can go down a spiral again?