My emg test

[Sammy88]

Oh dear ha ha limp , so sorry lol I'm dyslexic . So like me it's leg onset. Nice to hear you are progressing slowly. Hope you dont mind , are you still fairly mobile ?

My legs are rather weak now, I can walk short distances like from the living room to the kitchen. Outdoors is another matter, mobility scooter comes in handy. Walking sticks don't seem to help much.

 

[Nikki J]

Do you have an afo?/ brace? I can still walk a bit with mine. It supports the front of my leg as well as ankle and foot drop. I was lucky to have an orthotist who understood ALS. Depending on your situation a zimmer frame might be an idea. You do not want to risk a fall

 

[Sammy88]

wow thats brilliant being able to still walk after 8 or so years even if it's alittle. That gives many people who have been recently diagnosed some hope.

Yes I to have a foot brace. It supports my ankle but my foot still seems to be slapping on the ground. A zimmer frame would definitely help me indoors, yet another mobility device i need to find space for. Luckily I quite like my mobility scooter for outside.

Reminds me of the story my daughter told me. She works in a hairdressers, every month there's a lady with a rather fast mobility scooter. She comes flying through the doors on her small compact mobility scooter smashing into the receptionist desk ready for her hair appointment .

 

[Nikki J]

I am very fortunate. It isn’t unheard of though. Years ago when I was asymptomatic a doctor I saw fr a research study remarked he had patients ten years in still walking- not well but walking Both my aunts could too. Ask them to evaluate your mobility device situation.

 

[Sammy88]

It's nice hearing some als/mnd patients are still about 10 years later, especially with some movement.

Is the genetic form of als less aggressive ? I'm trying hard to research als/ mnd . Having dyslexia makes it that much harder .

Unfortunately I'm still getting nowhere with my gp or temporary neurologist, so no help with my foot drop brace.

I have now ran out of my nerve medication amitriptyline, the pain in both my legs at night is so tiring. Stomach cramps/ pain is worrying me also. Its scary being told you have mnd then being left alone to deal with it without any medication...Well it's shocking.

Thank you for listening to me moan tho Nikki j, it does help alittle getting it off my chest.

 

[Nikki J]

When are you seeing the scond opinion? Soon I hope!

re genetic forms first the research doctor was not referring to any particular form just that he had a handful of patients who maintained some ambulation. There are lots of genetic mutations, known variants within some of them, plus known and unknown modifiers that can make things better or worse. We had a member here whose family all died in 2-3 months from their first tiny symptom- brutally fast. The most common variant of sod1 is more aggressive than average - usually 18 months give or take. My family mutation C9orf72 which is most common in European ancestry populations is usually average. There is a modifier that makes it aggressive - everyone with it and c9 dies within a year of symptoms. In my family the women generally progress slowly. The men get it later in life but die faster. My sister was an exception getting it young and having an average progression. We don’t know if it was a lifestyle issue ( nothing glaringly obvious) or possibly we have good genetic variant that makes it slow that she didn’t get. Two studies have done sequencing on me. I hope they find something that will help future PALS

 

[Sammy88]

Thank you for sharing some of your great knowledge with me. So many variants in this horrible disease. Its sad to hear so many of your family members being affected, I can see how you are such an expert in this area.

I'm thankful there are people like you willing to be guinea pigs/ tested on to help fight this disease and find a cure.

I have no idea when or even if I will finally get to have a second opinion. After the random call from the neurologist at National Hospital in queen's Square london. I haven't heard anything. I was supposed to have a follow-up emg test 3 to 6 months later, that was changed to 6 weeks after my initial emg . That never happened either.

I would love to be seen in a special mnd clinic. I've heard they look after you much better. Wow to be seen by an expert in als/mnd , things explained to me in detail would be appreciated and well a dream frankly.

I'm quite jealous of America's health care system, it seems much better than the rather poor nhs in the uk.

 

[Nikki J]

You do have excellent mnd doctors. You should be seeing one at Queen’s Square. they have an MND center. I am extremely fortunate because I live near a top ALS clinic and because I was being studied did not end up going through a general neurologist. Most US PALS start with a gp eventually see a general neurologist and finally are referred on to someone with ALS experience but not everyone lives near an ALS center. Both systems have issues. The UK has much better support services

 

[Nikki J]

I would contact Debbie Hadley the center coordinator. Her email is on this page Motor Neuron Disease Centre

if you know the name of the person who called that would be best to mention of course. If you can’t recall browse the people section to see if a name jumps out but she could probably look up your record if not

 

[Sammy88]

Thank you so much Nikki J 😊
I clicked the link, is says normally patients are seen within 4 weeks, fingers crossed 🤞.

Cant believe I didn't get the neurologist name unfortunately. Was so shocked by the seemingly random call. If i dont hear something soon i shall email Debbie Hadley. You are a star Nikki , many thanks.

 

[Sammy88]

Just a quick update

I did email Debbie Hadley last week, she replied within an hour. She's checking with her colleagues and will get back to me ASAP. Unfortunately yet again I've heard nothing since 😕

 

[Nikki J]

When it has been a full week I think it is reasonable to ask for an update. There can’t be that many male doctors in the MND center. If she replies no one knows anything ask her advice. This is utterly shameful that it is the end of October and no one has arranged follow up.

 

[Sammy88]

Hi Nikki, The random call from a neurologist from the National Hospital I received now makes sense, after I got a letter from my neurologist saying my 2nd opinion was in fact a phone call appointment by mistake, unbelievable eh....

My temporary neurologist ended the letter , she has now cancelled my appointment with her in the new year (didn't know I had one with her) as I'm now booked into a MND clinic. What MND clinic??? This is news to me. Obviously she isn't answering my calls or emails, never has.

Deb Hadley never got back to me either. So now I'm totally left hanging with a diagnosis of MND and no medical person to consult with 😒. Luckily i have this site so I can research new symptoms and how to deal with them and ofcourse I'm very thankful to you Nikki for holding my hand so to speak through this nightmare.

 

[Nikki J]

It still seems like someone referred your care to the National Hospital. You got a call and presumably he said your name. While he could have misdialed the odds of him wanting another Sammy with a possible diagnosis of MND are pretty impossible. So maybe he meant to call the next person on his list but even so why was your information there at all if you weren’t meant to be evaluated by them?

 

[Sammy88]

Yes Nikki he definitely had all my details, it was just that my temp neurologist set my 2nd opinion up as a telephone appointment.

I'm worried that the fact Deb Hadley hasn't got back to me means no further appointment has been made for me.

I've been constantly bounce around the nhs system without actually getting anywhere.