Second Opinion Today

[juliesmile]

No Atrophy?

Tom,

Do you have any atrophy? And if I remember right, no pain, numbness or tingling?

 

[tmasters]

Hi Julie,

Yes of course I remember your reply to my original posting. And I read about your 2nd opinion yesterday on the other thread. I feel a special connection, as mine and Steve's stories and timelines are very similar. I actually asked Dr. Graves about PMA and he said "some people call it that, but it's ALS". So a lot of this is up to the doctor's interpretation and semantics. But I've also read that the "PMA" or "LMN ALS" whatever you want to call it, gives you more time.

I received a copy of Dr. Graves report in the mail Friday and he said "Since he does not meet the El Escorial criteria, he does not qualify for ALS, however I am very suspicious that that will be the ultimate diagnosis". He sounded more hopeful and optimistic in person. It's a report to another neuro, so I understand why he has to tell it like it is. When we read that, my wife and I had a good cry and then moved on.

I'm relieved and somewhat hopeful about the possible DX of MMN but statistically, the chances are low. According to the University of Washington website, MMN is ~50x rarer than ALS, and 80% of the time symptoms appear first in the hands and arms rather than the legs. Doesn't really fit my case. So it's 250:1. But it's something to hope for. You should ask UCSD about it.

http://neuromuscular.wustl.edu

I'll certainly pursue IVIg treatment, but I'm not going to waste time running after MMN, and rather I've decided to start Lithium right away. Maybe false hope, but false hope is better than no hope.

Regarding trouble sleeping, etc. you should talk to your family doctor. Mine is more than willing to work with me on this type of thing, especially after hearing my neuro's diagnosed. I just take an over-the-counter to sleep now, but he's offered me more.

-Tom

 

[juliesmile]

Tom,

Those reports are quite impersonal aren't they? WE got ours as well. Pretty harsh.
Steve doesn't meet the El Escorial criteria either, that's why he has the Motor Neuron Disease/PMA diagnosis. At this point he is only showing LMN symptoms/signs. No brisk reflexes, spasticity, tone etc. But he has fasiculation body wide, atrophy, and weakness and the EMG/NVC results all point to MND/PMA. But our Dr. ndicated tat the UMN may become involved at any point. I realize he will suffer the same fate as a full blown ALS patient, as it is the LMN problems that actually get you in the end. But I have to admit getting this DX at first has made it easier for him and his family. Just being able to add the little statement, "but the up side is PMA isn't as aggressive as ALS and he has 5-10 years rather than 3-5" makes it a little more bearable.

We have found the Tylenol PM and it is working fine. He actually has slept the past 2 nights without anything.

Our Dr. ruled out MMN. But good luck with your IVIg treatment. We will ask about lithium at our next appt.

Take care Tom, and best of luck to you and your lovely family.

Julie

 

[bluebottle]

Sorry about the diagnoses

Tmasters - excuse me for jumping in on your post but I still dont have to many privlages on this site yet - I want to speak to Juliesmile as I am early on this journey and my symptoms and those of your husband Steve are very simililar.

I was recovering from a leg operation and so my initial weakness and foot drop was put down to that trauma but as I have recovered from the op my leg weakness remains despite the concerted efforts of physio's. I have foot drop in both feet and so wear AFO's. My quads are very weak and never recovered from being immobilised following the op. I had NCS which showed no neuropathy but after the EMG was told that my neurologist would be asked to look at my back - that was 8 weeks ago and have heard nothing more from the hospital. I am not sure whetherI should chase it up - I have an added complication in that my thyroid results are not normal either.

Julismile - any advice being that bit further down the raod - I am managing this alone and feeling very alone at the moment as can't say anything to friends as no diagnoses. Thanks

 

[1Mother]

Hi Bluebottle. Interesting about your symptoms developing after "leg surgery". Did you receive Nitrous Oxide? Also how old are you? Can you describe a pattern of weakness, sensitivity or temperature changes consistent with neuropathy in your legs? Your operation might hold the key to what ails you. Hope you had a nice weekend in spite of this stress.

 

[bluebottle]

Nitrous Oxide?

Hello Mother1,

Thank you for your reply. I am not sure what I had - it was a general anesthetic with the needle in the back of the hand. I remember waking up and having an injection due to shaking. I am now 41. You ask about sensitivity or temperature changes in my leg - I don't have that. Also I was told I definately don't have a neuropathy after the NCS and after the needle EMG was told that the report would recommend that my back is looked at. Not sure if this helps any. I have a reflex in my knees but only just move - there was no reaction to the bottom of the feet test. I think I am a conundrum!

 

[juliesmile]

Get an MRI

Bluebottle,

I would definitely chase after a follow up. If the Dr. recommended they look at your back after doing EMG and NCS, then in all liklihood the problem stems from something pressing on nerves in your back. I'm no Dr. by any means, but I am hopeful that ALS is not a path you will have to travel. The good thing you have to focus on is the EMG and NCS came back normal. If those showed denervation or conduction block youmay need to consider ALS. But get in to Dr. and get an MRI of your spine. The fact they haven't followed up on this is inexcusable.

Take care and stay in touch.

julie

 

[bluebottle]

Thanks for the reply Julie and I am grateful for everyone reading and replying to posts despite their own situations.
During the EMG the doctor said that there was difficulty in getting some activity on insertion of the needle. At the end of the NCS I was told I definately dont have a neuropathy but I was not told that I definately didnt have something at the end of the EMG test. Excuse my ignorance - does ALS always have to have a positive NCS and a neuropathy? I am not sure now, does PMA have a negative NCS. From what was said I don't know that I had a 'normal' EMG but desperately need that appointment to know for sure. Thank you for letting me stay in touch - I really hope I am in the wrong forum, but just now dont know where I belong.

 

[wright]

To Bluebottle

Hello bluebottle

Typically, the sensory part, as well as the conduction part of the NCS is clean with ALS (motor amplitudes can be affected, though).
It's the EMG that will show acute (positive waves and fibrilations) and chronic denervation/reinnervation (increased motor unit amplitude) and fasciculations.
Just so you know: you can have acute and chronic denervation/reinnervation with a radiculopathy which can be caused by a slipped disc, for example. Also, if you have muscle atrophy and just acute denervation, then it's not going to be ALS.
Bottom line: "dirty" EMG's don't always mean ALS; there are many other things that can cause "dirty" EMG'S. You have to look at the clinical picture and the EMG together.

Hang in there.