Frustrated: More questions than answers - Page 3

crystalkk · 09-01-2009, 10:05 AM

John,

I will be keeping my fingers crossed...That it is something treatable.
Good luck with the tests on Thursday and Friday and keep us posted.

miss91 · 09-01-2009, 10:23 AM

Hang in there John.

Naeco · 09-01-2009, 11:26 AM

Thanks guys. I'm trying to stay positive but yesterday was somewhat of a turning point. I had a hard time accepting the doctors reaction to the strength test (squeezing his fingers) and I couldn't get it out of my mind when I got home, so I asked my wife if I could try it again and.... I had no idea things had gotten this bad. I guess I've been compensating with my arms most of the time.

I thought I was ready to hear whatever the doctors have to say but now I'm not so sure.

halfin · 09-01-2009, 01:11 PM

Hi John, I'm sorry to hear that you are having these problems. I too hope your test results are good. I had kind of a funny story about hand strength.

When I went to the neuromuscular clinic at UCLA for my testing in July, they did the routine strength tests. Now these tests have always bothered me, because I'm generally pretty strong. I was doing some weight work last year, got to where I could do 30 push-ups, take a break and do 20-more. I'm no body builder, but I was pretty wimpy before, and I worked hard to build up my strength. When the doctors do these little tugs and shoves on your muscles, it doesn't seem that useful for a reasonably strong, fit, guy. I had to stop my workouts because of some pain issues, but still I could lose probably 50% of my strength and still wouldn't have much trouble resisting the amount of force the doctors apply. Maybe for a little old lady the doctor can tell if she's weak, but I don't see how you could tell if an active guy was weak by these tests, until he's really far gone.

But that's not the story. One test did show some weakness, the muscle that extends the fingers of my right hand. The doctor was able to push that down pretty easily. So he says to me, "are you really trying to resist me?" Say what? Of course I'm trying, I've been resisting him easily everywhere else. This is a serious test so of course I'm taking it seriously. The question really annoyed me. I thought about showing him just how well I could extend my middle finger, if you know what I mean!

(Actually I have since found that this doctor has a rather wicked sense of humor, so now I almost wonder if he was inviting that kind of response...)

Anyway, I understand what you are going through, the anxiety, the waiting, the worry. I have been going through the same thing myself recently, and I am still wrestling with it. The one thing I would suggest to keep in mind is, even if you should receive bad news now or some time in the future, there is always hope. Even a worst case scenario, a diagnosis of ALS or something similar, is not a death sentence. Your future is not determined by what the doctors say. You should not assume you will be gone in a year, or two years, or five years, or even ten years. This disease hits everyone differently, and no one can say with any certainty what will happen to you. So don't give up hope, don't assume your life is over.

Again, that is the worst case, there is a good chance you will hear better news than that, and I hope that you do.

Naeco · 09-01-2009, 02:27 PM

I've had that same finger reflex with some of my doctors too lol. I thought it was strange how much the test can vary from one doctor to the next. The neuro that I was seeing just gave me this quick test where I just pushed my elbows up, elbows down and then knees up, knees down. Simple as that and she had no concerns about ALS. So then this new Dr at the Mayo does the strength tests on my hands (much more logical for ALS wouldn't you think?) and also a balance test where I had to put my palms facing up and then bend the wrist down and close my eyes. I thought I was doing fine until he grabbed my arms to keep me from falling.

These were two different tests within about 2 weeks of each other and one doctor thinks it's a joke that I'm even asking about ALS and the other one seemed very concerned. You would think there would be some type of standardized strength test for neuromuscular disorders? Or maybe my first doctor was just too arrogant to bother with it.

-John

crystalkk · 09-01-2009, 04:46 PM

John,

In the beginning of your post you mentioned something that you keep getting stomach and hand infections.
What kind of hand infections are you getting? Could that be causing the weakness in your hands?

Naeco · 09-01-2009, 06:09 PM

Quote:

Originally Posted by crystalkk

John,

In the beginning of your post you mentioned something that you keep getting stomach and hand infections.
What kind of hand infections are you getting? Could that be causing the weakness in your hands?

That's a good question. The Dr. at the Mayo Clinic thought it was some type of skin reaction that usually happens from stress. He said he would give me more information about it after all the other tests are completed but he didn't seen too concerned about it. He was mostly concerned with the weakness, breathing and balance problems.

I have some MIBI and pulmonary tests scheduled for Thursday that might be able to provide some answers as well. They also have me scheduled for an endoscope and asked me if I wanted to be sedated for that procedure. I felt like the the dude from the Matrix when he said he wanted to take the blue pill.... I looked at them like... "I don't want to remember nothing. Understand?" lol.

Hopefully the test go by quickly.

-John

Naeco · 09-01-2009, 06:18 PM

I forgot to mention... all this time I thought my doctor was an intern - like someone just out of Med school. Part of me was thinking... wow these Mayo doctors must need a TON of medical training if they're not able to intern until they're like in late 40's. So stupid me... I was looking up his background on the Mayo website and realized that doctors that specialize in Internal Medicine are sometimes called internists. Who would have guessed? Not me lol

So rest assured.... I'm seeing a real doctor after all

Naeco · 09-04-2009, 08:18 PM

Just wanted to let you all know that I had my EMG today and it came back CLEAN!!! Not sure what to make of it because my symptoms were terrible today. I had a really bad reaction to a stress test on my heart this morning. I don't know what it was but my legs felt like water ballons after they gave me the IV and the doctor had to stop the test in the very begining because of some reaction he noted. It was a terrible feeling.

So the good news is that I now have a clean EMG that I can feel better about but I'm still left with a feeling of WTF. Hopefully my doctor will have more answers next week but for now things seem to be pointing away from ALS.

Thanks for your thoughts and prayers!

John

joelc · 09-04-2009, 08:23 PM

I am so glad you can put ALS out of your mind! That is FANTASTIC!
I hope they can now find out what is going on and cure it!

crystalkk · 09-04-2009, 08:40 PM

John,

That's great that things are pointing away from ALS!!!! I hope you get answers soon, I do understand the frustration.

Wynn · 09-04-2009, 11:35 PM

I've got to assume they're testing you for Epstein-Barr virus and myesthenia gravis.

shelleynshaggy · 09-05-2009, 01:01 AM

Jim has not "officially" been diagnosed with ALS because he does not have any atropy in his muscles - and a neg EMG. However, all the signs are there. His diagnosis started last year as depression because of his personality changes (that was the dementia) and 15-20 pounds of weight loss between Early Nov and early Feb (I joked who the hell looses weight over the holidays??) We really weren't concerned until the memory loss and mumbling came about. Then the occasional tremor or spasm in his calves. Our Neurologist even commented "wow - you are in really good shape!) He has toned calves - that move on their own. He looks like a healthy 36 yr old man unless you witness the movements in his feet or legs, the choking spells or catch on to ther little personality changes and other quirks. He looks healthy - but he has either ALS syndrome or MND (not sure why they are different. He has an entire panel of neurologists scratching their heads. My advice - PUSH ON. Get the orders with diagnosis codes (the #'s - not the words) they plan to bill them under and call your insurance company. I insisted on the driving evaluation - the code just had to be right and insurance paid for it. Get the lists of tests and codes together and call your insurance company and ask if these are covered. Usually they don't care who asked for it - it just needs to be coded correctly. Can you maybe get a 2nd opinion with another doctor. It should be in you patient bill of rights = find out how your insurance covers that also. Good luck to you.

shelleynshaggy · 09-05-2009, 01:11 AM

Jim's EMG was negative - the dr didn't think that was evidence of NOT having ALS because we can definately see the Muscular Fasciculations and the tremors, plus the babinski signs and limited range of to motion. Those are there - but were not active during the exam - I was leary about the doctor that did the lower extremity testing any how. Did not explain anything and let Jim leave the exam before completing it - never talked to be though stated on his order was the diagnosis of dementia. I have a great feeling aout our team and the fact the work for a recognized ALS Center. MOVE ON if you do not care for the doctor - or worse yet they don't care for you!

Naeco · 09-05-2009, 09:42 AM

Hey Shelley, thanks for the feedaback. Your husband has gone through some similar symptoms that I've had. I originally went to see the neurologist about a year ago for short term memory problems, dementia and fatigue. The MRI, CAT scan and EEG all came back negative so they gave me a dx of depression and put me on Lexapro but it hasn't helped at all. I still have very serious short term memory problems because sometimes I forget very important things like whether or not I took my insulin for my diabetes and I've also had times where I by birthday or anniversary presents and then totally forget on the day of. Wiffey gave me the look of death when I did that on our anniversary.

I'm not really sure what to make of the tests. The thing that makes me feel like it's not ALS is the fact that my symptoms were so bad on the day of the test and the EMG didn't pick up on it. The other tests all seemed to be pointed to ALS before that so that was really reassuring to get that result yesterday. I think I failed the pulmonology test miserably and the stress test hit my legs like a freight train but had no affect that I could feel on my heart. So all that stuff had me really worried for the EMG. The Dr that did the EMG must have had bad bedside manners because it took forever for him to show up after the shock test and I actually fell asleep on the exam table because I was so exhausted from the tests that day and he finally showed up while I was sleeping and I just remember waking up while he was in mid sentence and I have no idea what he was telling me because I was half awake. So then he tested one leg and said that if he didn't notice anything abnormal that he was going to stop the test. I guess he found what he wanted to see but I could only see the intern during the test and she kept holding her hand over her mouth and had a concerned look on her face. I was actually really worried about what the doctor was going to say at that point but I guess he thought everything was fine. One thing that was really weird is that they said the test wasn't supposed to hurt but it hurt like hell when he was sticking the needle in my leg muscles. I could hurt to put any type of pressure on it for the rest of the day. It's better this morning but it still feels really stiff.

Hopefully the doctor has some ideas after my endoscope next week. I'm just going to follow the test results and hopefully there's a good explanation for this. I really don't have any interest in taking the EMG again at this point. That was the worst test that I've experienced so far.

Take care

John