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scottishmum

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PALS
Diagnosis
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after visiting my neuro in march he said that due to previous ncv and emg test results and my progression over the last 4 years he was sure it was Motor Neuron Disease.

after explaining all the types he then said in his opinion he thought i had ALS but was going to do a further nerve conduction on my arms (which have always tested clear even though the twitches and cramping are in both arms) as he was looking for upper neuron damage as all previous tests had only shown lower neuron damage and denervation on my legs .

anyway had this test where the held a ring against my head and measured the conduction speed into my hands have to say was very weird feeling , they did say they dont do this type of test very often.

the letter arrived today and says " Your recent tests to look at the connectivity of the nervous system have not shown delays in conduction, suggesting from the electrical perspective on these tests , no abnormality with the connectivity . you will be kept under review in my clinic.

tried phoning his secretary but she is on holiday till next week , any input would be greatly appreciated

thanks
 

Toto's Dorothy

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Jan 31, 2012
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11/2008
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Kansas
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Wow Mum, that's a new one. Maybe Wright or Alyoop can tell you. You might send them a pm. But it does seem like partial good news. Is it standard practice for doc tors to send letters? I have never received one that's why I asked. So, I gather you get the dreaded phone call to make an appointment if its real bad?

Keep us informed, inquiring minds want to know!

Toto
 

tmasters

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California
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I haven't heard of this test specifically, but it could be a variation of the NCV. Anyway, nerve conduction is normal in ALS.

I hope you can get more information. I see you don't have enough posts to send a PM to Wright.

-Tom
 

scottishmum

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PALS
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Thanks guys , was a bit surprised to receive the letter , i had received a clinic appt for August a week ago . He did say at the last appt if the test showed anything he would start me on rilutek and make an appt with the MN nurse so I don't know what to think .

I know he was looking for upper Neuron involvement as he thought my arm reflexes were brisk and my fingers were showing weakness on clinical examination , prior to this I have had 2 EMG / NCV tests done , and both times my arms have been clear while my legs have shown obvious signs of deterioration.

Just feel really confused :?:
 

scotslassie

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Hi Scottishmum. I am orginally from Glasgow (Newlands/Shawlands, now just outside Pitlochry). My aunt (and I) attended the SGH Neurological Sciences Dept as I am assuming you are also. I take it that you are in touch with Laura and Carol who are the MND Nurses for the West of Scotland. If not - Laura is 0141 2012381 and Carol is 0141 2012380. I'm not disclosing any personal information here, those are the numbers on MND website. Speak to them. We also received numerous letters from my aunt's consultant and found Laura and Carol to be more than helpful at explaining the "jargon". The Forum for MND Assoc is quite helpful as is MND Connect but they do not discuss anything medical. Phone the SGH tomorrow and speak to the MND nurses, if you don't feel happy with your answer, then ask for a telephone appointment with your consultant. This will be arranged for a time to suit you and him. Write all your questions down beforehand and go through them one by one, writing down all your answers. If you're still not happy then ask for another face to face consultation. We never had any problems with this and never had to wait any longer than a day or two to speak to my aunt's consultant. The fact that his secretary is on holiday has no effect on his appointments or his obligation to his patients. If you want to talk to someone outwith your family and friends, then I am more than happy to give you my telephone number, I'm also in Glasgow at least once a week. This is an excellent forum - I wish I'd found it earlier, a great bunch of people and a wealth of information. And they tell it like it is......Listen carefully to Fogey...that guy knows what he's talking about. Take care x
 

scotslassie

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Hi Scottishmum.......I've gone to moderation! Hello from a fellow glaswegian. x
 

scottishmum

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PALS
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03/2012
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scotland
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glasgow
Hi scotslassie , us Glaswegians get everywhere! x
 

scotslassie

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Hopefully my post will appear soon. If not I'll try again. I'm taking it you are going to the Southern General? And are you in touch with the MND nurses? They are great if you need any clarifications re letters etc. You can also talk to your consultant if you make a "telephone appointment". His sec being on holiday shouldn't stop you speaking to him or making another appt. Take care.
 

scottishmum

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Joined
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Messages
9
Reason
PALS
Diagnosis
03/2012
Country
UK
State
scotland
City
glasgow
hi scotslassie just read your post thanks for that info , i have met laura previously at the clinic and yes i am at the SGH will try and contact the consultant today , will let you know how i get on. thanks again , this forum helps so much with information and support.
 

Alyoop

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There is a test they do for testing upper motor neuron conductivity, but I can't remember what it's called. It's been discussed on the pls part of the forum. I couldn't have it because I have epilepsy and they were worried it could trigger a seizure. That's most probably what you had. I never looked into it in the end.
 

scottishmum

New member
Joined
Mar 18, 2012
Messages
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Reason
PALS
Diagnosis
03/2012
Country
UK
State
scotland
City
glasgow
Hi Alyoop , thanks for the info , I can see how it may trigger a seizure as when they place it against your head and pass the current through the sensation is very strange feels like your head is shaking inside! , but less painful than the normal NCV Test . Hopefully I'll speak to someone today to clarify what it means but that sounds like good news , thanks again
 
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