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Riggs-
While I can not say anything to your symptoms other than work with your doctor (Which you are- good! What's next with tests? Has your doctor referred you to a specialist?), I would like to address a statement you made. "...hoping some of the knowledgeable users can help b/c that's what they're here for"- The users here are knowledgeable because they are either suffering from ALS, or helping care for someone with ALS and come here to share knowledge and get support from each other for a very hard and heartbreaking situation. They are not here to help people diagnose themselves or tell people they have ALS. Please be very careful in your wording, as it comes across that you think there's a whole group of people here to help YOU specifically- with little understanding this is a group of people affected by ALS that supports each other and very kindly tries to offer advice to people searching for diagnosis as well. This group's primary objective is to help people who have already been diagnosed with Motor Neuron Disease.

I am not saying you have nothing to worry about- you have symptoms that affect you seriously- but you're telling people online to help you in a situation that a real live doctor can help you more with. Please work with your doctor. Do whatever tests they recommend. Ask your doctor what is on the list of things they are looking for and ask them what is your next step.

I wish you well
 
and am hoping some of the knowledgeable users can help me b/c that's what they are here for.
um actually no, we are here to support people with ALS


I am not in the early symptoms stage anymore. This is over a year.
again no, you do not have ALS, have not been diagnosed with ALS and are unlikely to ever be diagnosed with ALS

If you were, you would be early in the disease, you don't sound like you are totally paralysed and about to die mate. Your stuff isn't even being measured, so you can't imagine what our PALS truly go through I think.

We really can't offer anything more. You keep telling us all the pain and feelings and we can't match it to ALS.

Your doctor is continuing to try and get you to a diagnosis, and this is where you need to stick. There are general health anxiety forums where you could do this if you must, but it's not really appropriate to continue it here. We need to support the people with ALS, that's a huge job already.

I do wish you all the best in working with doctors to solve whatever is going on.
 
So. I'm back. Will be going to Mount Sinai tomorrow to see a Doctor MacGowan which I have read good things about. My legs are so stiff and achy - I feel that going to see him is a must. I can tell the whole walking on tip-toes and heels thing is getting much harder. But this is why I'm posting...

I just read in the Newly Diagnosed section about a guy my age named BlueTrain. I had followed his story for awhile b/c it felt so close to mine. Was praying he'd never show back up but unfortunately he did. If you read his original thread he speaks of all his pain in legs, spasticity, gait issues, and other problems with his legs. So I guess there really is pain involved. And...4 EMG's. Not one EMG which will show ALS - but 4. So in reality, you can never really know. So I sit here stiff as a brick with weakness, pain, twitches, slurred speech, bipap, stiffness, and numerous other issues. He knew something was wrong - as do I.

Maybe just maybe - is it harder to diagnose younger, in shape people? Is it because doctors think you're too young to have this disease so they will tell you 'No way it's ALS' and send you to dozens of other doctors trying to find something else? Do they just wait until you come into their office and there is nothing else it could be? Why do the experts say 1 EMG is all you need when so many PALS post it took them upwards 4? Why do they say no pain is involved when a majority have pain. I guess I'm in this for the long haul - another EMG tomorrow possibly.
 
Why do the experts say 1 EMG is all you need when so many PALS post it took them upwards 4? Why do they say no pain is involved when a majority have pain.

There are always exceptions. But they are still not the "majority".

Good luck with your visit.
 
Blue Train's first post indicated he had upper motor neuron findings. At that point it seemed as if he was heading for PLS/HSP but as said elsewhere ( I think I said it on this thread) there are people with initially normal EMGs BUT they are not told they do not have MND and are followed closely. Blue appears one of these people who presented with clear UMND and the LMND followed quite quickly. And spasticity which he had/has does hurt
 
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Thank you for replying Nikki. I always appreciate your input.

Let me ask this. I got 2 dozen roses for my fiance about a week ago. She asked me to move the vase. I could easily grab and re-locate the glass vase (which was heavy) with my left hand. But with my right hand it was slipping out and way to heavy for my right hand to take on the task. I am right-handed. This is the weakness that I should be worried about correct?

What should I tell this new neurologist? The whole story?

After all this, Do the PALS and CALS think that ALS is now a definite possibility?
 
Yes you should tell the new neuro everything- in a concise and organized fashion. Specific examples of weakness are good. Read again Laurie's sticky on preparing for appointments.

Since you have not reported exam findings like Blue's you can not compare your cases.

You have reported much that does not seem like ALS but after tomorrow you will know what if anything your clinical exam shows. That is what matters exam findings and test results. All I know that you have so far had abnormal are b12 and d deficiencies which I hope you have corrected? If not, then your clinical picture will almost certainly remain unclear
 
In order to avoid forgetting something, I would type (or write) out a list of your symptoms and questions. The list can be long but be very specific and descriptive. Try not using lots of words. Best wishes for your exam.

I will pray for you.
 
Hi,

I´ve searched Lauries sticky on preparing for appointment but doesn´t seem to find it..could you please help me?
 
It's in the sticky at the top of this forum called
Getting a Diagnosis. There is a large amount of information in there on preparing for an appointment, under a sub heading.
Good luck with your appointment.
Wendy
 
Well I'm back. Wound up seeing a doctor who I actually read about on this site. Will keep his name to myself but the doctor was at Mount Sinai/Beth Israel in NYC. Very different from past visits - this visit they threw me to the lions right away without seeing the doctor. Started with NCS with a technician and then the doctor came in later to do the EMG - also before the clinical exam - which I've never seen before. The EMG lasted no more than 5 minutes. Just from reading this website, I know they are supposed to be longer. This is now my 5th EMG - with no help in site. This guy's findings were by far the most wild I've ever written. He wrote in a paragraph that the feelings I have stem all the way back to the anger I had with my mother when she was an alcoholic when I was a child. I'd delve further into this but it would waste your time as well as mine. Also wants me off the breathing machine at night b/c he thinks that has nothing to do with what's going on. Wants me to see some special therapist who charges upwards $500 an hour. Impossible to say the least. I've had anxiety problems in the past - but NEVER did I feel weak or feel in pain. It's getting worse by the day.

So I sit here with an extremely weak right hand (with right arm feeling like its hanging) which is slowing down everything I need to do on a daily basis. My two legs feel like I've run 10 marathons back-to-back-to-back etc. Is that just brutal spasticity? The legs crack when I walk and now I feel myself swaying. I think that's my gait getting worse and worse. I wake up and take a shower in the morning and try and stand in one upright spot under the shower-head and I feel myself swaying b/c my legs won't let me stand upright? I walk up and down the halls and my legs just kinda make me sway a tad. This is all gait issues right? I try and do some of the stuff they used to make me do in clinical exams and it's so much harder now. I can barely squat. When I squat - my legs crack and it feels like I'm not gonna get up. The pain is insane when I squat. I know this site is very adamant about pain not being an issue with this disease - but from all my research it looks like stiff legs and pain is seen very much so. Going up and down stairs is brutal. And the twitching. A few new spots now. Pinky, between thumb and index finger, now they've moved into my left shoulder, feet, wrist, left side of my neck was bad for a few days. And my speech is still slow but nobody has complained yet.

What do I do? Do I need to ask one of these doctors to officially refer me to an ALS clinic or ALS Specialist? Or are they just gonna keep saying no to me until I go there and I have lost my ability to walk, talk, or use my hands? I feel like that's what my doctor who told me "you might be in for a long diagnostic process" is waiting for. Would love to hear your thoughts?
 
All I can say is what you report just does not sound like the onset of ALS, not at all.
You have been trying to convince yourself and us for 15 months now.
My husband was dead within that time frame - perspective shot.

These doctors are smarter than you may realise and can tell a lot just by looking at you. ALS is all we know here, and you are repeatedly told you don't have it and we can't see it in your symptoms so I don't think there is anything more we can say. I know that sounds tough, but any one of us would trade our terminal diagnosis.

You may need some serious therapy.
 
Hi Riggz

I think everyone here has provided as much insight and support as they can. You live in a large Metro area and have access to good facilities and medical professionals.

Many doctors have provided their opinion as have the generous folks on this site. No one is seeing ALS.

It sounds like you may have a combination of anxiety and a physical problem but trying to match your symptoms to a terminal disease will only cause more distress.

Just a thought, but have you had back or neck problems ruled out, i.e., compressed nerves.
 
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