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rhythman

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Firstly, thanks to all who have read my posts these past 6 weeks and helped me out. I also want to tell you that I no longer look up anything on Dr. Google, and have only dealt with real doctors recently. That was good advice. :)

I met again briefly with my neuro yesterday and he said he wasn't ready to definetely say als yet, but it's "something I have to seriously consider now". He said the emg results were "abnormal" and that along with the clean mri's, normal bloodwork and how I've progressed physically has caused him to consider als. I go back in January to see him again. I'm still hoping for another diagnosed, but there are 2 things that are really frustarating. (Actually, there are several things, but there are 2 in particular that I want to 'rant' about. Thanks in advance for 'listening'.)

1. Even though he's looking at als as the culprit, there are some things he said were not really typical. He suggested that my presenting symptom was probably the ear pain when swallowing, that I'd had periodically (but now constantly) since March. He said that would make sense with the bulbar issues I'm having, but "bulbar als doesn't typically present with pain like that...although it can". He also repeated essentially that same sentence when I asked about the limb numbness/pins & needles that wakes me up nightly, the intense pain on the bottom of both feet and the palms of my hands and the rapid progression of weakness in all 4 limbs and the bulbar region. All "Not really typical."

So many things he said were "atypical", but he also said the test results to date still point toward als...sigh!

2. Although this is more widespread and intense 'this time', I've had many of these symptoms seperately before and they've always gone away. They're just not going away this time. Twenty years ago, I had right shoulder fatigue so badly, I could not hold a newspaper up to read it. That lasted months, then went away. I presently get wicked 'exertion headaches' at the base of my neck. Had those off and on for years. They won't go away this time. While sitting at rest (not while moving), one or more limbs just start shaking as they would if I were suffering from hypothermia. This can last up to 15 sec. at a time and is visible to anyone around me...it looks like some kind of seizure. I've had this many, many, many times during the past 30 years. I'll have it daily for weeks/months, then nothing for awhile. It's always come and gone. My tongue has changed shape once before and then gone back to normal ,and I've had weeks of hoarseness which has come and gone. The neuro even pointed out that I have "significant atrophy" at the base of my right thumb (which is why I can't grip things or write well anymore), but I've had several 'episodes'-2 to 3 months each-of intense pain in that exact spot since the mid 90's!

The neuro said that all of this is interesting and suggests a neurological history, but all he can deal with is what he sees now. Sigh again.

I just don't know what to think. So much is so familiar, but it's all come at once this time, brought a few new symptoms too, and isn't going away!

Thanks for 'listening'.
 
I really hope it turns out to be something different than ALS.
 
It's unfortunate that your situation is so complex, it will no doubt delay getting any diagnosis. When you have had these episodes in the past, did you see a doctor for them? Did they make any progress towards a diagnosis at that time? Or did they always clear up before anything happened?

It's not impossible that you could both be having a recurrence of previous problems, and also developing ALS independently. That does seem a little incredible though.

Different neurologists seem to have very different ideas about how soon to raise the possibility of something like ALS. Some will talk about it practically on the first visit, while others won't go there until absolutely every other possibility has been ruled out. You might want to ask him directly how much experience he has had with ALS diagnosis.

How would you describe your progress over the last few months? Are things continuing to get worse, or have they plateaued? Often this seems to be a key guide to whether it is something like ALS.
 
You have always seemed pretty logical in your approach here. I think most people appreciate that.

I also am hoping that it is not ALS for you. It really does sound odd for an ALS presentation based on what I've read (let me emphasize "read" because I don't have a diagnosed of anything).

I can't recall if you have said this is a neuromuscular specialist or not. If not, certainly pursue a nm specialist because they have seen it all. From what I remember about all your symptoms, it sounds like one possibility is relapsing-remitting CIDP. Obviously that is one of the many dozens of things it could be.

I'm trying to encourage you - not baffle you - what is happening does enough of that on its own. Again, prayers that it won't be ALS, OK?
 
rhythman,

It does not sound like your appointment was much fun. How did he find your reflexes to be? I agree with Hal in that with such a complex set of symptoms, it may take longer to get things sorted out. Statistically though, if it is ALS, those who take longer to diagnose also have a slower progression.

Is the neurologist that you saw a neuromuscular specialist? With the span of time you've had periods of problems that eventually remit again, I wonder if anyone has considered investigating relapsing-remitting CIDP, or mitochondrial disease? You might ask for your neuro to consult with, or refer you to someone who's specialty is rheumatology & clinical immunology...

good luck to you, keep positive, as its the best way to stay strong.
 
Dang rose - great minds think alike!
 
Thanks for the replies. I'd like to answer some of the questions asked in the posts above.

When you have had these episodes in the past, did you see a doctor for them? Did they make any progress towards a diagnosis at that time? Or did they always clear up before anything happened?

I only saw doctors for the worst episodes in 1992, 2001 and 2005. I saw neuros in 1992 and 2001. In 2005, my GP didn't refer me to a neuro. The only thing I've ever been told I had (in 2005) is something called 'Chronic Prostatitis/Chronic Pelvic Pain Syndrome or Pelvic Myoneuropathy' for the recurring and long lasting prostate 'infections' I've had for years.

How would you describe your progress over the last few months?

Getting worse every week. My hands are cramped badly now, my arms and legs fatigue quickly, and swallowing more frequently causes choking episodes (dry foods only...not liquids).

How did he find your reflexes to be?

He said reflexes are within normal range and Babinski and Hoffmann's still good. I thought this encouraging, but I sensed that he didn't think this a big deal. I believe this suggests not much umn involvement, but isn't lmn the 'bad' one anyway. I know you need both for als, but lmn only can still be bad right?

Is the neurologist that you saw a neuromuscular specialist?

I honestly don't know, nor do I know how much experience he has had with als patients. My GP just said he'd find me another neuro after the first one became ill. Should I just ask him? He's probably 45 years old at the most and does seem to be kind of arrogant. He strikes me as the type who would not be happy if I challenged any of his comments. Example: When I asked if it could be MS, he said that there's no chance at all because he knows how to interpret an mri report. When I asked if MS plaques could come and go, he just said...I know it's not MS, so we have to look for other causes.

Would a general neuro know to consider CIPD, MG or mitochondrial illness? Sometimes I think that in smaller communities like mine with fewer cases of everything, the doctors will just think of the better known illnesses like MS, als, etc.

Thanks again for all your help.
 
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You are right about your local neuro. A small community neuro most likely has seen very few nm cases. Get referred to a nm specialist, preferably at a teaching university/research center. Remember general neuros aren't specialists in nm diseases.

ALS is rare - CIDP is more rare.

CIDP is treatable, but it can do permanent damage. Get referred - if your local arrogant neuro is worth anything he will get you a good one. If not, get your GP to do it.
 
I'd be really surprised if this turns out to be ALS for you. Normal reflexes, absent Babinski and Hoffman, pins and needles...

No doubt there is something very wrong but my vote goes for something outside of ALS.

Zaphoon
 
if you don't like your neuro, get a new one....this is too important...and we pay them remember.....if he is even mentioning als, make sure you get to someone that knows als.

just my opinion...hope it turns out to something else, take care
 
If you DO NOT have brisk reflexes, hoffman's, b-ski, you DO NOT have UMN symptoms, a big part of ALS. I think people really know if they have Brisk reflexes, if you have them it is undeniable, they have effect on your everyday living, they are really bothersome, you would have clonus, which is something that if you have, you know it.
 
If you DO NOT have brisk reflexes, hoffman's, b-ski, you DO NOT have UMN symptoms, a big part of ALS. I think people really know if they have Brisk reflexes, if you have them it is undeniable, they have effect on your everyday living, they are really bothersome, you would have clonus, which is something that if you have, you know it.

It's interesting, and encouraging, that people on these boards say it's really good to NOT have the brisk reflexes, clonus, positive Babinski or Hoffmann, but I got the impression that the neuro didn't feel a lot better about my situation. I know that UMN and LMN are both required in a certain number of regions for als, but could it be that it's been all LMN thus far, and UMN will kick in 'down the road'?
 
Rhythman,

You really need to get to a Neuromuscular specialist. Preferably one that works at a teaching hospital in a major city. Something is wrong and it's been that way for decades. It wasn’t ALS back then, and my guess (as many others here) is that it isn’t now either.

The significant atrophy you have in your hand didn't occur in just the past couple of months. You would have had weakness first, and then atrophy showing up much later. The fact that you had pain in that exact location dating back to the 90's indicates that something was wrong (not ALS) and it caused some sort of nerve/muscle damage. What ever caused this damage would also cause your EMG to be abnormal. What happened to your hand could also have occurred in other areas as well to a lesser extent (ie your shoulder weakness 20 years ago that lasted for months only to recover) How was your EMG abnormal? ALS has very specific characteristics that show up in and EMG. An abnormal EMG could just as likely point away from ALS. Depends on what is abnormal.

The fact that you recovered from these episodes in the past should give you some assurance. Perhaps it’s just taking longer this time. I’ve been going through some difficult times these past 8 months in which I quickly deteriorated in just a few months, but only in this past 1 ½ months, I have seen some signs of improvement in my legs. Two months ago (six months after start of all this) my legs probably hit rock bottom, but now the strength has much improved. Grant it I have developed some new or worsening symptoms during these past 2 months in other areas that are concerning, but if my legs can improve, so can the other areas. The bottom line is that you may still recover. This can take time, but at the same time, you need to try to find out what is going on as you may be able to speed up the healing process.
 
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