Just diagnosed and so confused

[wilmanj]

Hi my neurologist just diagnosed me with ALS. I am so confused by different searches on line about next steps, 2nd opinions, etc. He saw me once, I was complaining of back problems that continues to be present after two months although much improved but now I have leg weakness. I was unable to walk on both heels, only able to do so on one. He sent me for NCV and EMG and said that it shows degenerative nerve to my leg and also abnormalities on my back nerves. He says my arms are also weak but with the exception of feeling overwhelmed with stress and up all night, I have not had any fatigue or noticed any arm problems. He has scheduled me for a spinal tap and MRI of the brain in two weeks and referred me to the two ALS neurologist specialists at the hospital. Of course there is nothing available until November with the specialists.

Does it seem a premature diagnosis to anyone else out there. No other symptoms really other than joint pains in my hips and shoulders. When I asked why my severe back pains, true pain and not soreness disappeared and now only left with weakness, and less weakness than before, he believes I may have just strained it and it is healing but with the objective findings on the NCV and EMG he has indicated ALS. Is this wait for a true specialist typically particularly for someone just diagnosed. Trying to stay positive and strong for the kids but it is sooo difficult, even now just typing about it. Thanks for any insight.

 

[ottawa girl]

Sorry to hear about what you are going through. It's not easy.

Your post 2 days ago indicated that you were told it could be something else and that your EMG is scheduled for next week. My understanding is that an EMG is required for diagnosis.(I could be wrong- I'm not a doc tor)

I am confused by your post today in which you now say you have now been diagnosed with ALS.

Can you please explain if I have misunderstood?

 

[hjlindley]

I had a probable diagnosis from an ALS clinic in 2009 as noted in the doctor's notes. He did not tell me, which doesn't bother me, as there was there is no treatment or cure. He did another EMG after my physician noticed the twitching and an elevated CPK 3 reading. In the end of 2011 was the first time I had a dirty EMG. But all the neurological findings were good for a probable diagnosis. I think it depends on whether you're not whether you are at an ALS clinic or not. I was, and after the dirty EMG my good doctor probably read my record for about 45 minutes before he came to give me the news of ALS. By that time my walk was funny, my right hand was weak, and my left ankle wasn't cooperating. So probable diagnosis can come before definitive diagnosis. The definitive diagnosis requires a dirty EMG showing deennervation and reennvervation patterns. That's probable diagnosis was sufficient to be declared handicapped from 2009. I'm sorry you've joined the club, as this is the one none of us want to belong to. Just remember that every patient progresses differently and the only case you should look at is your own. The head of the ALS clinic made it very clear that once this disease finds the speed, it keeps it slow or fast. Good luck ,you'll find plenty of friends on this site.

 

[wilmanj]

Hi, thanks for the response. The morning after I posted my first posting, the hospital called and said that they could fit me in for the two tests which I took yesterday and the had the follow consult with the neurologist

 

[wilmanj]

Also, the neurologist told me yesterday that he had been hoping it was some other diagnosis but given the overall findings on the nerve conduction test, that is what led him to the conclusion.
I am assuming that the stress that one goes through as well as the emotional roller coaster ride, that one's physically body feels like "crap" soon after the news. Just getting more paranoid now with more body fatigue and overall sense of fatigue including difficulty breathing which were never there previously. My family members trying to be supportive and telling me it is a seemingly body reaction to such stressful news. Objectively I believe they are correct but some other affirmation or more "true and realistic" feedback from others would be helpful.

 

[Miss]

My husband's diagnosis took months. His onset was in his hands, so EMG's in the lower body were a bit vague. Friends here that had foot onset seemed to be diagnosed almost immediately. As for stress after the diagnosis, it only makes sense. In the best of circumstances, stress causes fatigue and an overall sense of feeling like "crap". It's logical that you would be focused on ALS symptoms, things you might never have really noticed before the diagnosis.

With the diagnosis in hand, you need to get into action. Contact your ALS Association. Go to the Social Security office and fill out the paperwork for medicare and social security disability. By chance are you a veteran? If so, go to the nearest PVA office and get started on that paperwork. This is the time for action, while you are at your healthiest. Then, you can focus on things that will help you maintain strength and health.

I am so very sorry for the diagnosis. You will find many, many answers here.

 

[panguinjen]

I can't answer your question, but I can offer support as you go through this process.

Jen

 

[HelenL]

So sorry for your diagnosis, as Missy suggested, get in touch immediately with the MDA/ALSA groups for information, help and ALS clinics. Welcome to the forum, sorry you find yourself here.

 

[nikolab]

:?:

ALS does not start with pain,EMG is required for diagnosis. :!:

 

[AzBabs]

Hi, I am in Phoenix also. I saw my primary neurologist Wednesday and he got me into Barrow Neurological Institute on Thursday (the very next day). I saw the Director of their ALS department. Don't understand why it would take 2 months to see ALS specialist. You should call your primary neuro back and insist he get you an appt ASP. Good luck. If I had to wait that long I would go crazy!

 

[Atsugi]

Absolutely, you get to go to the head of any line. Social Security has an expedited (immediate!) decision for you: call them. Medicare has no waiting period for you. VA will also expedite, if you're a veteran.

Don't wait for a second opinion. Get your diagnosis in writing in a letter, then start getting your entitlements going before you become too weak to benefit from them.

Don't wait. I wish you two things: A) that your diagnosis is wrong, and B) that you live years longer than most. However, my wife lived 8 months and she was almost totally paralyzed after just 4 months. Bad news, not uplifting, but you need to plan and act now.

 

[hangingon1]

It took six months of going to different physicians before my wife found out the truth. Even though her neurologist was 99% sure he still sent her to a man he thought was one of the best diagnosticians. After he concurred, we faced the truth. It is a hard and bitter road, that varies with every person. She passed away last week after a three year struggle. I sincerely hope you do not have it. There are many fine and caring people on this site and all are fighting their battles with this monster.

 

[wilmanj]

Thank you for the advice on SS and Medicare. I will do so asap. I am not a veteran but thanks to those for that suggestion.

I need to find a support group meeting. I don't know what is right to do in terms of my kids. One is in denial, holding out hope. Other is very sad and afraid. I don't know if it is best to be brutally frank and hold out hope for them. I know there is no real good answer. My emotionally ride is so tied to their outcome. One moment I feel that the diagnosis is too early as symptom only in one lower limb but then with the stress I feel the twitching in the arms now and that I know would be upper affect and not good as well.

This is so sudden and I am overwhelmed, the home, finances, kids. Oh god. Trying so hard to keep it together.

 

[Miss]

Take a breath. It is overwhelming. How old are your children? Fortunately, the ALS Association has a chapter in Phoenix. Contact them as soon as possible. There, you wil find lots of answers and support groups. My thoughts are with you. I remember well the panicked feeling we had when ALS was put on the table. Our children were 15 and 18 at the time. One faced it head on, the other pulled back. If you face it with courage and strength, they will follow.

 

[Luke]

I'm going through a diagnostic workup myself and it looks like I'm heading in a direction other than ALS, thankfully. Nonetheless, along the way, it has certainly been a concern of mine and something I've discussed with my doctors. Between my own tireless online research and being a member of this board for several months, I've picked up a thing or two. Others here have far more knowledge and first-hand experience with the disease, and I certainly don't purport to know as much as they do, but I do know this: to get a diagnosis of definite ALS, you need to have 1) evidence of both lower- and upper-motor neuron damage, 2) these findings must be present in at least three distinct regions of the body (for example, bulbar, cervical and thoracic), and 3) there must be progression of symptoms over time.

From what you've told us, it's almost unimaginable you would be given an ALS diagnosis after several weeks worth of symptoms. EMGs alone don't conclusively diagnose ALS. Certain types of EMG activity can point to lower motor neuron insult, which could be the result of all kinds of issues. Nerve conduction studies are used to rule out peripheral neuropathies primarily so they aren't diagnostic in and of themselves, either. You have a brief history of symptoms that started in your trunk muscles (an unlikely site for the start of ALS), and the symptoms have improved to some extent, which is not, from what I understand, the course of events for someone with ALS. The point here is, even a layman like myself is reading your story and going "huh?" If I were in your shoes, I would be aggressively pushing for that second opinion, and I sure wouldn't take that doctor's diagnosis at face value. Unless there's just something on your EMG that can only point to ALS and nothing else, it just seems hard to imagine how he could make that diagnosis with certainty. It may well be -- who knows -- but here's hoping he's wrong... and frankly, there's good reason to question him, from what I'm reading. Best of luck to you.