Any possible way this is not ALS?

[bluedog]

Hi, I'm new to the forum and would appreciate your thoughts on my history symptoms. Specifically, in there any possible way, within reason, that this is not ALS?

In 2002, I developed UMN symptoms/signs, including cramping, spasticity, heavy limbs, hyper reflexes, and clonus. Also had bodywide twitching and dizziness. No weakness. Clean EMGs, MRIs, and all other tests. The symptoms continued for 11 years to a much lesser degree. Was able to play basketball, run, lift weights, and cycle long distances during this 11 year period with no problems except cramping. Did not really think about ALS after first 2 - 3 years of symptoms.

About 6 months to a year ago, started having trouble swallowing solid foods. Could chew OK, but food got stuck going down esophagus. Two months ago, started having constipation, rapid weight loss (15 lbs in a week), shortness of breath, loss of muscle bulk bodywide (went from XXL to L in a week or so), arms and legs feel weak, choking on both liquids and solids, and clearing throat after eating. Normal clinical exam three weeks ago from ALS specialist. Also, clean EMG of right leg and arm three weeks ago. This morning, noticed atrophy on right side of face along jaw line.

Thank you.

 

[vickim]

I would go to your dr. Loosing that much weight that fast would cause weakness. I doubt it is als, but you have something going on. Constipation could be from dehydration. Go to your gp and see what he /she says. Good luck.

 

[Ms. Pie]

Also weight loss could be due to dehydration. Please go to your doctor and get it figured out. It could be one of many things other than ALS.

 

[notme]

HI

I'd say chances of ALS at this point are pretty slim. That said--go see a GP ASAP. Something is going on to have that substantial of weight loss--and it could be something serious.

If your intake has not changed--then something internal has. I'd imagine they'd want to check the parts of you that handle absorption.

ALS just doesn't cause weight loss like that-- but some cancers can. Better to be safe than sorry!

 

[bluedog]

I forgot to mention that I'm a 54 year old male. Putting the rapid weight loss aside, does it sound like ALS? I'm also yawning all day and dropping things. I recently had a colonoscopy, upper endoscopy, and abdominal CAT scan. All normal, except the endoscopy showed a Shatzki ring and hiatal hernia of the esophagus, which I don't think can explain the swallowing issues.

Is it just because of the rapid weight loss that you are saying chances of ALS are slim? I'm thinking this is bulbar onset.

Thanks.

 

[notme]

HI again

No, I don't believe it's bulbar ALS. You have a hernia and document esophagus issues--that's the likely culprit for the swallowing issues.

In Bulbar ALS, the presenting issues are normally slurred speech noticed by OTHERs and/or swallowing difficulty with liquids--NOT solids early on as you had.

You don't 'mention either early--so I'd say Bulbar ALS is allso not a concern.

Are you still having the UMN issues? The hyper reflexes? Are you having other UMN signs? If so, what does the doctor say about them? Has he mentioned either PLS or HSP or mS? Have they all been ruled out? Although your clear clinical exam sort of means the UMN issues are no longer present? That would not be the case in HSP or PLLS. They stay and get worse in those conditions.

All in all, by the way, the Schatzki-Gary ring is a narrowing of the lower part of the
esophagus that can cause difficulty swallowing. Didn't the doctor explain that? It can cause food to actually get stuck in the throat. They think they may be caused by reflux. Are you on anything like Nexium?

 

[Tokahfang]

If your symptoms seem so stark to you but don't show up on a clinical exam, that is not ALS-like.

 

[bluedog]

Notme, thank you for the reply. I feel that I still have the UMN issues such as stiffness and spasticity, and my exam did show 2+ reflexes in the knees, although the neurologist considered the exam normal. He didn't test for clonus. I think that I have increased muscle tone too. No neuro ever mentioned PLS or HSP, and I had thorough testing for MS, which was negative (MRIs, lumbar puncture, evoked potentials, etc.).

The gastro doctor did a biopsy of the esophagus to test for esophagitis to see if that could be causing motility problems. I expect the results today. The dr. did explain that even though the Shatzki ring is in the lower part of esophagus that it could feel like the blockage is higher when swallowing food. Just seems that that isn't the cause when I have all these other symptoms. The doctor prescribed aciphex.

 

[notme]

Difficulty swallowing is one of the signs of that Shatzki ring. It can be causing all your issues in the throat.

Your other symptoms don't sound like ALS to me--but hell, what do I know? I'm not a doctor. Rapid weight loss would concern me--and not as an ALS sign--it's not--but some pretty bad things can cause rapid loss of weight.

Are you eating the same or less? I'd INSIST on them finding a cause---demand the blood tests an other tests that can find hidden cancers if you're really losing so much weight with no difference in what you eat.

If those are clear--I'm at a total loss.

 

[bluedog]

notme,

Once I noticed that I was starting to lose weight, I started to eat less. This was due to anxiety and loss of appetite. I also did not sleep at all for 6 weeks and just paced 24/7 at home and work. This made it difficult to put weight back on. The past week or so, I have started to sleep a few hours a night and have been forcing myself to eat more than usual. My weight fluctuates greatly, but I have managed to regain some weight (up to six lbs).

I have had all kinds of blood work and procedures done and nothing cancer-related has shown up. The tests have been normal. My kidney function labs were off for about 4 days because I had acute kidney failure from the CAT scan contrast, but then they went back to normal.

My anxiety level is so high that it is difficult for me to work or cope at home. I fear that I will lose my job and insurance before I get a diagnosis of anything. I have an appointment with a psychiatrist this afternoon in hopes of getting some meds that will take the edge off. But I doubt anything will help because I am so flipped out and feeling so bad from the symptoms.

The results of the gastro biopsy were normal too yesterday. So there is no motility related explanation for the swallowing problems. The Shatzki ring can cause swallowing problems but I don't think the type of motility issues and choking higher up that I experience.

I have a follow-up appt with my neuro tomorrow and will push for a bulbar emg.

 

[notme]

WHY can't you believe it's the ring?

The esophagus works kind of like a snake eating a rat. It moves the food down. If ANYWHERE in that tract to the stomach has a problem--it can and will cause a ripple effect.

Your anxiety is your main issue--and to be blunt if it's to the point you've lost tons of weight and are not sleeping--it's severe enough they need to hospitalize you and get you on some meds to treat it before it kills you!

You don't need a bulbar EMG--You need to accept and treat what you know you have--and give it a chance to work. 2+ reflexes isn't exactly horrible. MINE are +5...that's right---+5, with positive Babinski, leg weakness that's noted on tests...clonus...and spasticity that's bad enough to be notable in my WALK. Do you really wanna talk about UMN signs? I don't HAVE ALS. Don't know what I do have--but I'm here and still kicking. Oh...and my left hand is 90% useless. I use a bi-pap for breathing, and my right arm is starting to atrophy as well. So, let's not talk about LMN issues either. Believe me, I've got 'em. What I do NOT have is ALS.

Please---don't take this as an attack. Just realize that you're literally worrying yourself sick over a disease you don't have! A NORMAL clinical exam means NO ALS when combined with a normal EMG. I wish I'd had even ONE normal clinical anything--or a normal EMG. I haven't. Even if they show something, it doesn't mean ALS.

I wish I knew what to say to convince you! There isn't a muscle in the jaw that would atrophy to the point of being noticeable. A possible stroke could make it LOOK different though.

At your age-- (almost the same as mine) there are a multitude of issues it COULD be. Bulbar ALS doesn't have the presentation you're describing.

Purely UMN issues for 11 years are PLS if anything--or HSP if they are confined to your legs. UMN issues cause weakness--it's just a different cause of the weakness, if that makes sense. I fall all the time. I likely have PLS or some other UMN syndrome--it hasn't been long enough to rule IN PLS. That takes YEARS, literally. 11 years is more than enough. It's not curable--but it's also not fatal.

I'm 90% sure I have PLS--10% wonders if it's ALS. (As I have the atrophy and core-body muscle weakness) But those aren't going to kill me--what's going to kill me is my lungs and loss of breathing muscles.

If you're having shortness of breath, considering your age, the heart is the first thing to look at--your lungs the second. LOTS of reasons for SOB.

I am concerned that you're so fixated on ALS that you are missing a very real issue somewhere.

 

[notme]

Off to Moderation again

 

[bluedog]

What does off to Moderation mean?

Thanks.

 

[vickim]

It means a word someone typed in their post caused it to go to the moderator to be reviewed before posting. It will show up later.

 

[bluedog]

Notme, thank you for taking the time to reply and for the insight you provided.

I had a follow-up appointment with the head of the ALS clinic and one the neurologists who works closely with her. Normal neuro exam again. She told me that there is no way that I have ALS and, like you, said I needed to get the anxiety under control before I end up in an institution. She told me not to come back. Refused to do more tests and practically threw me out. I'm taking this as a hopeful sign.

However, I think that I present with so much anxiety that my symptoms are discounted.

My legs and arms feel weaker each day, and my breathing problems seem textbook