Scared . . . feeling guilty

[vcarp]

Okay, this forum must get all sorts of hypochondriacs posting "do I have it messages." Problem is, since ALS has no definitive test, one wonders if patients with ALS aren't the most reliable in getting a diagnosis. PCP's seem to brush it off and not even consider it. Here is my situation:

I'm a male 44 that was in decent shape. I used to mountain bike and hike quite a bit. I love to hunt and fish. 6'2", 225 lbs in December 2010. About a year ago I noticed that I didn't have quite the strength that I had a few years ago. My 18 year old son could move anything, and I felt that I couldn't. I attributed to getting older. Muscle waste usually begins in the 40's. I thought about working out again.

Then this Fall, I started having a metallic, bitter taste in my mouth. Went on line, and found that lots of people have this. This past Christmas, my stomach became quite gassy and upset, but along with it I had this odd sort of pelvic pain. Numbness, tight muscles like feeling. The doc ordered a CT and found diverticulosis. He then ordered a colonoscopy and confirmed doverticulosis with resolving possible diverticulitis. All this time I was having odd intestinal issues that would wake me up in the morning. Sometime between the CT and colonoscopy (Jan-Feb) I woke up one morning and felt a little weakness in my left leg - right below the buttucks. I had pulled my back a little in November, so I thought it just to be that. But it progressed to toe numbness and a little lower leg weakness. Then I began to feel sciatic-like pain. I spent hours on the internet trying to figure it out. While on the internet, my left hand began to just bother me. It seemed nerved up and weak. It would come and go, but then I noticed as I was having trouble sleeping because of the sciatic pain that the arm would act up. My Eustachian tubes were clogging all the time and made me feel a bit uneasy at times. The sciatic pain was weird, crampy, numbing, and weakening. It kept me up at night. I finally went into the ER because my PCP wouldn't see me for 3 weeks. The put me on prednisone and gave me vicodin andn naproxyn for the pain. I used the vicodin for one night to get some sleep and the naproxyn off and on. I started noticing muscle twitches, but not a lot. My left arm seemed to get worse. In a month I dropped from 225 to 210. Now I have definite weakness that migrates (mostly on left) between both legs and I have it in the left arm. My buttucks seems to have lost some meat as well as my chest.

I went into my PCP shortly after the ER visit and he didn't even consider ALS. Although I didn't bring it up. I was thinking MS. He took xrays and found that my lowest lumbar was quite unhinged. Something about one of the struts holding the vertebrae to the next was gone and the vertebrae was cattywampus. He thinks he has found the problem. But the next day my arm weakness really ups itself. I noticed today that I can't make a firm chest muscle like I could just a few weeks ago. The sciatic pain is mostly gone although the leg and toe numbness remain. I can still do everything, although some days I really feel tired in the morning like I can't get enough air. I worry that this is ALS, but it might just be anxiety.

Everything seems to be moving so fast and the symptoms seemed to start in odd places. Does ALS ever present like this?

How does one get a doctor to really look seriously at this?
VC

 

[pumpdoc]

Nothing you have said would lead me to belive that you have ALS.

 

[LizT]

i agree. Not als. youre first mistake was looking for the answer on the internet.
diverticulitis explains the weight loss, especially if youve have a flare up.
the issue your doctor found explains the numb and tingling and weak feeling youve had.
als doesnt happen that quickly. and its not a feeling of weakness, it is true, clinical weakness. like you cant button your shiirt or open a jar of pickles.
please oh please get als out of your head. your doctor didnt suggest als because you dont present with als symptoms. its not a matter of getting them to take you seriously, its a matter of you believing what your doctor has told you.

 

[Al]

Sounds like the PCP is doing his job looking at different things and not popping out 10 things it could be and scaring you. You don't sound like ALS. L et the doc do his job and believe him.

AL.

 

[trfogey]

Okay, this forum must get all sorts of hypochondriacs posting "do I have it messages." Problem is, since ALS has no definitive test, one wonders if patients with ALS aren't the most reliable in getting a diagnosis. PCP's seem to brush it off and not even consider it. Here is my situation:

Patients with ALS can tell you about what it's like to have ALS, but we can't diagnose it. That's the doctors' job. If you are having problems communicating with your doctor, you should find another doctor, simple as that.

Everything seems to be moving so fast and the symptoms seemed to start in odd places. Does ALS ever present like this?

Not that I've ever heard.

How does one get a doctor to really look seriously at this?
VC

It's been my experience that presenting with any kind of neurological symptoms gets a doctor's attention and they do take you seriously. It appears that your doctor has taken you seriously also, since you've had several problems diagnosed during this time. What he doesn't appear to be taking seriously is your Internet-fueled theory that you might have ALS or MS. And rightfully so, apparently, because nothing you've related here sounds like ALS to me.

Your GI problems have been explained. The problems with your sciatic pain and the numbness and weakness in your lower leg are almost certainly explained. ALS-caused weakness doesn't come and go: it's permanent. If it migrated from arm to arm, it would leave permanent disability in its wake, not minor weakness.

Lay it out logically for us -- what symptoms do you have that make you think you have ALS?

 

[vcarp]

Well, at first I just had this weakness in my leg with no real pain. This progressed to greater weakness and sciatic-like pain. Although, it doesn't seem to presenting as sciatica either (straight-leg test, etc). At first, I thought it might just be piriformis syndrome, it seemed so muscular and would go away with a workout - only to come back at night with a vengeance. Then, I noticed a tingly sensation coming down my neck and into my left arm and it would act up when my leg was acting up. I have had a clogged ears with a knot in my throat off and on for about 3 months. It just seemed like I was adding a new symptom to a new area of anatomy every month or so. I began to wonder if this was ALS.

 

[Alyoop]

It's far more likely that you have 2 things going on, which are not related. It's funny how we have a tendency to try and lump it all together. You mentioned you work out so you probably have just knocked your neck about a bit as well. I had a neck injury that caused the same symptoms as you. Maybe you actually need to slow down on the workouts for a bit and let some healing occur. Just a thought.

Aly

 

[trfogey]

Well, at first I just had this weakness in my leg with no real pain. This progressed to greater weakness and sciatic-like pain. Although, it doesn't seem to presenting as sciatica either (straight-leg test, etc). At first, I thought it might just be piriformis syndrome, it seemed so muscular and would go away with a workout - only to come back at night with a vengeance.

You have an explanation for that symptom now -- probably some impinged nerves due to the misalignment in your spine. What has your doctor recommended that you do about that, if anything, and if he has recommended something, are you doing it? Presumably your doctor didn't recommend spending time second-guessing his diagnosis on the Internet.

Then, I noticed a tingly sensation coming down my neck and into my left arm and it would act up when my leg was acting up.

Not a symptom that I've experienced with ALS, and both of my arms are almost completely paralyzed by ALS. I've never heard any other PALS mention it as one of their arm symptoms. It is consistent with things like impinged nerves in the neck. According to my old chiropractor, a misalignment in one part of the spine is often accompanied by compensatory misalignments in other parts of the spine.

I have had a clogged ears with a knot in my throat off and on for about 3 months.

Once again, not ALS symptoms. It's been cold and flu season for the past three or four months. It will be allergy season for the next three or four months. Lots of people have ear and throat problems during this time.

It just seemed like I was adding a new symptom to a new area of anatomy every month or so. I began to wonder if this was ALS.

Why ALS? What symptom brought ALS onto your Internet radar screen in the first place? Have you read anything about ALS other than a list of symptoms? How does what's happening to you compare to what happens to people that really do have ALS?

And, adding a new symptom to a new part of your anatomy every month happens a lot after age forty. It's called aging. No offense, but at forty-four, you're not exactly a spring chicken any more.

 

[vcarp]

Okay, since last Sunday when I posted things have taken a turn for the worse and an obvious turn towards ALS, it seems. My wife was sick of me keeping her up with my worries and leg pain, so she decided to stay at another place with the kids for the night. As she was getting her stuff, I was at my witt's end and threatened suicide. I called my pastor and voiced my concerns. I believed that there was really something wrong and did not want to go through panic the whole night with no one around. They got concerned and it earned me a couple days and nights in the psyche hospital. I had blood drawn twice. I was examined by a physician twice. The therapist about laughed when I said that I feared that I had ALS or a brain tumor. She assured me it was all in my head. The psychiatrist said the same thing and listed me as non-classic bi-polar. He prescribed Celexa for the day and Zyprexa for the night and xanax for anytime I feel anxious. That was a week ago.

Since then progressive weakness in both legs. I strain to stand on my tip toes. My left arm does seems weak and I have tremous in it. I feel short of breath all the time. My neck aches and feels floppy. I still have this awful taste in my mouth at times. Muscle twitches often but not big and they happen all over. I have these warm rushes over a part of my body, which subsequently feels weaker after the feeling. I feel like my abdominal and back muscles have weakened. It is hard to sit up straight. If this is ALS, it must be the worst kind. What should I do? Everyone thinks it is in my head or I'm just getting used to the medication. I don't think so. One flight of stairs leaves my legs feeling like logs. My digestion is acting funny.

Please help.

 

[Alyoop]

I am sorry that you are going through all this. ALS does not progress that fast or cause the symptoms you are having.
You can forget it. I think you have become obsessed and irrational about it. Let your doctors treat you for your bipolar and anxiety and you may find everything improves. Our mind is a very powerful thing, do not underestimate it's ability to come up with just about any symptom you can imagine. It lands people in wheelchairs unable to move, with absolutely no physical reason. Drop the ALS and concentrate on getting your anxiety under control.
I wish you the best

 

[Gusflower]

The worst kind of ALS starts in your face and throat according to me. Speak, and the pleasure of eating gets taken. Then it moves on to the rest of the body.

 

[TedH5]

It appears you are suffering from severe anxiety. I did not go back and read all of your posts but have you seen a Neurologist? Your wife and kids were leaving you for the night. You need to be strong for them. You most likely do not have ALS but if you did what are you going to do? Nothing! So live life and love your family and let your Dr's do their job! Stay strong and keep the faith and control your mind and anxiety!

 

[laurel]

Your symptoms don't sound like ALS at all. To rule out any post viral things that can cause neuropathy why not ask your GP for a referral to a good neurologist specializing in neuromuscular disorders. In the mean time, a good counsellor would help so you don't bombard your wife and friends with your fears which in all likelihood are quite overblown by your anxiety level. Some of the new weakness is probably caused by the new medications. I would be weak if I was taking those meds. all of sudden <g>. Some good probiotics like Udo's would help settle down the digestive issues and help the diverticulosis. Best of luck and try to get a grip on that anxiety. We've all been anxious at one time or another but you have personal responsibility to attempt to address it without burdening your wife to the point of breaking your marriage apart.
Laurel

 

[vcarp]

Okay, symptoms seem to move and/or wax and wane:
1. leg weakness seems to change from day to day. They feel weak, but I can still bound up two flights of stairs two at a time. Other times I feel like my legs will buckle. Sometimes the calves feel week, sometimes the back of the thighs.
2. I've lost weight (only about 12 pounds over 3 months), my wife says that my muscles don't look atrophied, but I worry that it is too gradual to notice.
3. my left arm feels week and odd at times. yesterday, both hands seemed heavy. Today just my left hand feels funny with tension in the triceps as I type in a poor position.
4. Back of thighs feel funny, but this changes with sitting position
5. lower face feels tight from left ear, but yesterday I had the same feeling from the right ear
6. It seems that the muscle tone in my abdomen has weakened. I get burning pains there. I had some fasiculations there last week - infrequent, but lasting 3 seconds or less.
7. I get some small burning pains in the back.
8. Have muscle fasiculations but they are in front of thigs and calves. The are singular - like one twitch some times a few and done. I probably have a half dozen of these in an hour.
9. Still have strange taste in mouth. better in the morning but not so good in the afternoon and evening. Does not seem to change the taste of anything, but water has a bad aftertaste.
10. Everything seems to come and go, wax and wane, but the centers of pain and weakness extend mostly on the left side - scalp to toes
12. My toes seem numb at times, but not today.

Is this typical for ALS? Still scared, and I'm going to have my PCP refer me to a neurologist. Any good ones in Wisconsin or the UP of Michigan?

 

[wright]

1. Weakness with ALS does not come and go.

2. You've lost weight because you're not eating, because of your self-induced anxiety about a disease you do not have.

3. Again, weakness does not come and go with ALS and there aren't "odd feelings" with the disease. There is weakness . . . unexplained weakness that is gradual and insidious. Oh, and why are you typing in a "poor position?"

4. "Funny feelings" are not a symptom of ALS. Weakness is . . . and that weakness sure isn't dependent on your body's position.

5. Again, symptoms do not come and go with ALS . . . and the start of your symptoms (if you had ALS . . . AND YOU DON'T) . . . would not be bulbar and limb symptoms simultaneously.

6. Burning pain is not a typical symptom of ALS.

7. See number 6 above

8. Who cares

9. Strange taste in your moth is not a typical symptom of ALS.

10. Once again, ALS symptoms do not come and go.

11. Hmmmm, seems you have skipped number 11 . . . and undoubtedly saved me the trouble of telling you that "symptom 11" is not a typical ALS symptom. Thank you for that.

12. Numbness is not a typical symptom of ALS

I guess you're 0 for 12. Congratulations, you don't have ALS. You might have a few minor neurological things happening but I'm sure your neuro will determine what they are. In the meantime, call your wife and let her know she can come back home with the kids. I wish you peace.