Worried I have MND.

[Lou2020]

Thank you for accepting me into the forum.

I have come here for advice and maybe some reassurance as I am riddled with anxiety that I may have MND. Firstly my grandmother had MND when she was 68 and passed when she was 71, 5 years ago.

I have a diagnosis of chiari malformation type 1. However for many years, around 2 years I’ve felt what feels like heavy limbs. I begun twitching in my arms and legs in August 2018.

I had an EMG in Feb 2020 which was carried out in my left leg only in my thigh and calf, the results were normal. However since around May 2020 I’ve been having worsening symptoms, heavy feeling in my right leg which appears to be wasting as it is thinner than my left, an internal burning feeling in my thighs, tingling in my calf and my right ankle/foot feels weak my right foot also tingles constantly too and my big toe feels odd.

My right side wrist feels weak, especially upon waking in the morning, I can still lift things in my right hand but my wrist and thumb feel horrible, like it has no strength in it.

I can still stand on my tips toes and my heels, however I do have pain in the right calf, feels like the muscle is tearing.

my throat is constantly tight, I have to keep swallowing because I can’t feel myself swallowing, I also hear slurred speech but no one around me has heard it and doctors on the phone say they can’t hear slurred speech. I also have a lot of saliva in my mouth.

I had an another EMG in June 2020, where the neurophysiologist done it in my right leg, left arm and hand, my middle back in 3 places and under my chin so I assume my throat area in 1 place. The results were normal. I also had a creatine kinase blood test in June which was normal.

May I add I fatigued and tired from the minute I wake up, I don’t feel refreshed. I wake up and my body feels numb and heavy all over.

as I said I am riddled with anxiety over this.
if I had MND would the EMG I had done in June have indicated something?

the neurologist wrote to me to say the EMG showed no signs of MND or any other problem..

any response is greatly appreciated. Thank you.

[Olivia H]

Dear Lou, if you have had two EMGs showing no concerns, it is very unlikely to be mnd, there are so many other neurological conditions that have very similar symptoms, but two EMGs would usually be fairly definitive. Loss of ability to stand on heels and toes is also often, though not always, a tell tale sign, so you sound good in that regard. Best wishes and hope you find out what the problem is soon. Olivia.

[Ellie]

Sorry about your grandmother.

... the neurologist wrote to me to say the EMG showed no signs of MND or any other problem..

That should reassure you.

If you are due to see your Dr about your Chiari 1, you should discuss your symptoms with him or her. If you don't have an upcoming appointment, I guess you should make one.

If you need help with your anxiety, seek help for it.

Love Ellie.

[Lou2020]

Olivia, thank you for your response it’s very much appreciated.

The EMG I had in February 2020 was only done on my left leg in my calf and thigh. Would that be enough to detect issues?

However in June 2020, my right leg, left arm, middle back and under chin was tested.

If there is muscle wasting due to MND, would something have come up on the EMG even in early stages?

much appreciate your response.

[Lou2020]

Ellie, thank you for your response.

Is a normal EMG, enough to rule out MND? If there is muscle wasting due to MND would an EMG pick it up?

Appreciate any further response.

[Ellie]

ALS/MND is not diagnosed on the basis of an EMG alone, but after thorough clinical testing and a whole range of diagnostic tests.

You have had 2 normal EMGs and Neurologists found nothing in either EMG nor your clinical exams suggestive of an MND.

Take that and be grateful.

[Lou2020]

Hi Ellie

i only had a clinical in January in relation to the chiari Malformation. He discharged me from his care in January 2020.

Symptoms have changed and got worse since May 2020, then I had an EMG in June 2020. I haven’t had a clinical exam since January.

as I said, would the cause of muscle wasting show on the EMG I had in June?

and do my symptoms sound suggestive of MND?

thank you for your response.

[Ellie]

IF you had muscle atrophy caused by motor neurons dying, then the EMG would have picked that up, also you would have noticeable loss of function by that stage.

Tingling, burning, pain, "odd" feeling body parts all point away from MND.

Please believe your Neurologist.

[Lou2020]

My leg feels stiff, heavy, all my limbs do actually, especially my right leg and foot and my right hand and wrist.

I’m worried that what I am experiencing in my throat/mouth and tongue is because it’s spread. I feel like I am slurring, however no one else around me has mentioned it. I have extra saliva constantly now too.

my right foot tingles constantly and feels weak.

I’m worried that I’ve not had a clinical since January, therefore having an EMG in June that was normal can’t rule it out.

I have one leg that looks visibly smaller, my calf muscle is like mush and I have pain in the calf likes it’s tearing, I can’t straight my leg out properly because it hurts. i had CK blood test but it was normal.

I also have a grinding, tingling and twitching in my left shoulder too.

[Doug Carpenter]

Lou

As people here have said and your neurologists have told you on the basis of your EMGs, it sounds highly unlikely that you have MND.

However, several of your symptoms, e.g. tingling in your limbs, feelings of weakness, fatigue and perceived speech slurring are of course symptoms of Chiari malformation. You should discuss these with the medics dealing with that diagnosis.

You are clearly suffering from severe health anxiety. This in itself is debilitating and can bring on various physical symptoms. Please ask your GP for help or a referral for this.

Best of luck.

Doug

[Lou2020]

Doug, thank you.

I am concerned I have muscle wasting in my right leg, please see attached.

Given I’ve had a clean EMG in June, can this rule out MND?

thank you for your response.

[Banned]

The fact that MND is in the family is of great concern.

You should ask/demand a whole genome test. This will give you the answers that you are looking for. It will serve you well to do some research yourself. Most neurologists are 'job's worth's' and you have to elevate their knowledge in this rapidly moving field.

Please don't be intimidated by contributors on here.

[Lou2020]

Graham,

you say it is of great concern, is that based on my symptoms and the photo I have posted?

given I’ve had two normal EMG’s is that not reassuring?

[Banned]

Maybe you have a MND gene that your grandparent had. Firstly you need to be gene tested.

MND is highly complex.

[Lou2020]

Wow, this makes me extremely anxious. I thought given the EMG showed no signs of MND or any other problem I could be sure I was ok