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mike123

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Jun 3, 2011
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Learn about ALS
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MI
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Flint
Been trying to figure out what's wrong with me for the past 6 months. All this seem to have been kicked off after taking an otc supplement betaine hcl to increase stomach acid to improve digestion. It's been a really scary time. The doctors are not sure what's wrong. Does this sound like early signs of ALS?

My symptoms are: stiffness (legs, neck, arms),
Veins are appearing that I never saw before, in my hands, arms, legs, feet. They are more pronounced on my ankles and are now painful, hands becoming painful as well. The veins seem to be a main problem, it hurts now when I get IVs and blood draws. Not sure if this is because I'm also becoming thin in my hands, lower arms, feet, and lower legs. I've become very skinning in my lower extremities.
My palms (bottoms of hands) are painful when I pick things up and hold things. I get more impressions/indentions from things I hold and it hurts. Same for the bottoms of my feet. The padding seems to be weak.
For a while my muscles would twitch in a particular area, face, butt, arm, Now I get twitches here and there when I'm laying down mostly. Seems like after I exert a muscle and then rest it will twitch. also some muscle tightness, cramping
Seems to be a weight redistribution lot of flab/fat in my abdomen and skinny in the extremities. I'm a thin guy, 135, never had much fat in the stomach area, now I have like a beer belly.
pain in the feet and legs when standing, standing in one place hurts, I feel better if I'm walking
joint pain (jaw, knee, wrist, elbow) and lots of snapping, cracking with slightest movement
cracking, gnashing, grinding when moving my neck
tinnitus, not healing as quickly from cuts and getting bruises
increased sweating at night, and in the feet, was never a big sweater

Multiple emgs done, last one came back abnormal. NCV was normal.

EMG demonstrated muscle irritability and fibrillation potentials in distal muscles bilaterally. Borderline to mildly long duration motor unit potentials in paraspinal and bilateral medial gastrocnemius. The interpretation states the combination of fibrillation potentials and subtle neurogenic motor unit changes suggest mild bilateral sacral radiculopathy vs pn, a mild myopathic process is not entirely excluded.

All the neurologist say it's not ALS, they say to me ALS is not painful. And they also say the NCV is normal. But everything I read from what people are saying is that ALS is painful and it's the EMG that's important, not the NCV. So I don't know what to think about this.

Other lab findings, slightly elevated csf protein, straightening of cervical spine, lower spine dessecation, osteopenia in lower spine, slightly elevated calcium levels. Brain mri normal. MS, lyme, rheumatological diseases, small fiber, and infections have been ruled out. The drs have run everything they can think of.

Appreciate any thoughts. Thanks
 
The docs are right--ALS doesn't cause the type of pain you are describing--but obviously with those symptoms something is going on that needs to be worked up.

Have they given a reason for the myopathy? Perhaps the doctor will consider a muscle biopsy. If the EMG changes show a particular region-the sacral--it's possible the problem is due to a disc somewhere pushing on nerves. What areas have they don an MRI of?

Really, though, I'd think you're clear of ALS--just too many things that don't fit it in your description. The NCV is normal in ALS--yes.

Good luck to you.
 
I agree with notme. The pain you have described does not coincide with ALS pain. Have you gotten your potassium and thyroid checked? There is definately something going on so it is not just in your head obviously. If docs say it isn't ALS then you have to trust them in that...especially if you were told that by multiple doctors. Maybe suggest getting a muscle biopsy? Good luck.
 
You have a diagnosis -- mild bilateral sacral radiculopathy. The probable cause -- all those big medical terms in your symptom list that you didn't look up (osteopenia, spinal [disc] dessication). Your lower back is degenerating and it's causing irritated nerves near your spinal cord in your lower back. Since some of those nerves carry pain signals back from your feet and legs, the pain appears to originate in the feet and legs, rather than at the spot where actual damage has occurred. I wouldn't be at all surprised if you had something similar going on in your cervical spine (neck) as well, which might account for some of the symptoms you feel in your hands and arms.

I don't know why you're worried about ALS. It's been six months since this started and you don't have any paralyzed parts. You've had multiple normal EMGs and one mildly abnormal EMG, and the problems found on the abnormal EMG are completely accounted for by other findings of orthopedic degeneration in your spine. Finally, your doctors say that you don't have ALS and all you can think to do is look on the Internet to convince yourself that they are lying to you, using stories from people you don't know, have never seen, and will never meet.

You sound like you are so enamored of this disease that you're bound to claim it, whether you have it or not.

Maybe you can talk one of the real PALS around here into giving you theirs.
 
Injury to a disc can cause pain (radiculopathy) in the areas served by those nerves. When the disc goes--the material within the disc can come out and cause pain all on its own as well. In terms you might have hear--it's degenerative disc disease. Almost everyone develops it to one degree or another sooner or later. It can be mild ore quite severe. Think of a healthy disc as a sponge--when there is desiccation in a disc--it's like the sponge is now flat--it's isn't spongy anymore. It would look black on an MRI.

Back problems can cause multiple problems in the arms and in the legs--an orthopedic doc might be your next stop. Perhaps something is fixable. I'd imagine they would do MRIs of multiple levels in your spine. Sometimes thoracic issues can cause problems in the arms, as can cervical.

I'm guessing your information wasn't from an MRI report--an MRI would have reported the specific condition of each level in your spine evaluated--each individual disc.
 
Hey Mike,

I have also suffered with some similar symptoms. I believe it all started after a flu shot. My feet and hands have gotten skinnier (I had to get inserts for all my shoes to have them fit right), veins have become more prominent (especially in my hands and feet), there has been a fair amount of pain when pressure is put on my body and when I hold things (I wear gloves all the time when doing yard work now), twitches that have settled into various parts of my body (currently in my tongue and face/arms/right calf), and I too have gained weight in my belly after initially losing about 8 pounds when this first happened.

I have had three clean EMG's. One of my left arm, one of my legs and right arm, and another one of my left arm. My NCV was normal. I had a brain MRI that showed five small lesions that the doctors don't seem concerned about. A MRI of my neck showed bone spurs and only minor touching of a nerve.

It seems like there are many of us on here who are having very weird, annoying, life altering symptoms that are very real and related to something neurological, but unfortunately we are jumping to the conclusion that it is caused by ALS. One thing I have learned through this site is that there are a ton of things that can go wrong with someone neurologically. This is something I never even thought of prior to this past year.

The other thing that I learned is that there are a lot of wonderful people on here who are willing to go out of their way to help out others in distress.
 
Iwant to correct one thing you said, that everyone that has ALS says it's painful, wel hate to burst your bubble but it is just the oposite, as I sit here typing this with my one good finger I am totaly pain free.
 
Thank you for all the responses. Let me try to respond in one message. It's difficult to summarize 6 months in a short posting. I did not like how the neurologist said that I didn't have ALS because my nerve conduction study was normal. That did not seem to make sense. Many of them also tell me that there is nothing wrong and I should just exercise more. They tell me this after I have told them how much pain I'm getting just from walking, driving, etc. it's really ridiculous. They have clearly demonstrated their lack of knowledge which has left me to try to figure this out on my own. And many of them don't listen very well.

In terms of mris:

MRI lumbar: mild disc desiccation l3-l4, otherwise unremarkable
MRI brain: normal
MRI thoracic: normal
MRI cervical: tiny central disc protrusion at c4-c5, findings also mention straightening of neck, but was not mentioned in impression

All of this the doctors say is insignificant and does not explain my symptoms. The protein levels in the csf the docs say are not specific.

Potassium was checked, had full endocrine work up. My testosterone has been low, but the drs don't think it would cause these symptoms. Cortisol has also been high, but they ruled out cushings so they don't see the cortisol as significant.

Muscle biopsy has been the latest topic. Though I don't know if it will yield anything. I hesitated on the spine tap because it wasn't clear if something came back abnormal what the drs would do and sure enough I have some abnormal numbers that they don't know what to do with. So question is if I put myself through a muscle biopsy, is it going to help me or am I just going to get another result that they have no course of action for.

All the findings to this point I think are symptoms, I'm still missing the root cause. Even the emg, I think is confirming there is a problem, but not getting to the cause. Is there anything else to look at / consider? Again appreciate any thoughts, we have really run out of ideas on what to do.

Sorry for some of the ranting, these drs have shown some major shortcomings and said some down right stupid things.

Just to clarify: I don't want any misunderstandings, I didn't jump to ALS, there have been plenty of other diseases that I thought could be the cause, vasculitis being one of them. I'm simply trying to figure out what could be wrong cause clearly the drs can't do it. I also did not say that everyone with als has pain. I said I had read of some people who have ALS complaining that the drs say it is painless and that the drs are reading from a text book and out of touch with reality.
 
What was the reason given for the cortisol level? How did they rule Cushing's out? While I am certainly not saying you have it, your many symptoms and results you listed here would make it much more likely than ALS.

My point is, what symptom leads you to even be considering ALS?
 
Just to clarify: I don't want any misunderstandings, I didn't jump to ALS, there have been plenty of other diseases that I thought could be the cause, vasculitis being one of them. I'm simply trying to figure out what could be wrong cause clearly the drs can't do it. I also did not say that everyone with als has pain. I said I had read of some people who have ALS complaining that the drs say it is painless and that the drs are reading from a text book and out of touch with reality.

If you didn't jump to ALS, how did you end up here? What symptoms do you have that point to ALS alone and not some other condition or set of conditions that could account for your problems?

And here is what you actually said about ALS and pain:

All the neurologist say it's not ALS, they say to me ALS is not painful. And they also say the NCV is normal. But everything I read from what people are saying is that ALS is painful and it's the EMG that's important, not the NCV. So I don't know what to think about this.

As others have tried to tell you, pain is not a symptom of ALS. In most cases, it is a side effect of other processes that are caused by ALS, and some pain in ALS patients comes from sources that have nothing to do with ALS.

My recommendation to you would be to get yourself an appointment with a specialized pain clinic and let them work you up to see if they can figure out some relief for the pain if not the cause for it. And lose the chip on your shoulder about doctors too. You may just be a complicated case that takes a little time to pin down.
 
I'd imagine you misunderstood the doctor saying that a normal NCV meant no ALS. But in any case--when you go from doctor to doctor to doctor not one of them really has the full picture.

You need to start with a good internal medicine doc and go from there. But, stick with the doctor and let them do what they need to figure you out. Read some of the sites that do 'grading' of docs. See what others have to say about them and pick one to stick with.

There are several "Cushing" mimic syndromes. Pseudo-cushing. Did you know that just your anxiety and stress over your health can raise your cortisol levels? But, combined with the elevated CSF protein--there may indeed be something that can be treated--no one on an ALS forum can tell you that---but if you give them a chance, a good internist can.

Good luck to you. I wish I could post links--because there is a very good forum that covers a multitude of health concerns if you must search--but your symptoms just don't point to ALS in any way--which is a good thing.
 
I agree with what the others have said. Also the straighting of the cervical spine (depending on the severity) can cause some of your symptons, the degeneritive disc disease could cause some of the other symptoms, even if there is no stenosis, there could be arthritic pain. Also, if the qualified dr's haven't figured it out what makes you think you can? Their lack of knoweledge and what college degree in medicine do you have? All in all you should believe them and that they are doing their best to help you..............so give them a chance!
 
Thanks for the replies. I was concerned about ALS because of the muscle loss, stiffness, spasms, hyper-reflexia and then the abnormal EMG.

Cushings was ruled out by doing a dexamethosone challenge test.

But maybe it's pseduo Cushings, they won't call it Cushings, but the cortisol is high enough to be causing problems?

Does anyone know if low testosterone would cause these problems?

Does it sound like my nerves are causing the problem or are they being affected by something else? We can't even locate where the problem is originating from.

The doctors are out of ideas. I've probably seen a combination of 30 internists and specialists a number of times. They've told me they don't know what to do or they have told me there is nothing wrong me with and I should go exercise.

I have one return trip to Mayo to see if I can get anywhere, but spent two weeks up there before and didn't make much progress.
 
Thanks for the replies. I was concerned about ALS because of the muscle loss, stiffness, spasms, hyper-reflexia and then the abnormal EMG.

Cushings was ruled out by doing a dexamethosone challenge test.

But maybe it's pseduo Cushings, they won't call it Cushings, but the cortisol is high enough to be causing problems?

Does anyone know if low testosterone would cause these problems?

Does it sound like my nerves are causing the problem or are they being affected by something else? We can't even locate where the problem is originating from.

The doctors are out of ideas. I've probably seen a combination of 30 internists and specialists a number of times. They've told me they don't know what to do or they have told me there is nothing wrong me with and I should go exercise.

I have one return trip to Mayo to see if I can get anywhere, but spent two weeks up there before and didn't make much progress.

THIRTY DOCTORS in 6 months? Doctor hopping isn't going to get you any answers. NO single test can definitely rule Cushing's out. Too many of your symptoms just don't fit ALS. Unless you're two foot tall; 135# isn't obese.

Are you diabetic? Are you an alcoholic? There are a lot of things taken into consideration to determine if Cushing's is even likely. But--a lot of your symptoms are, as I said, more similar to Cushing than to ALS.

My symptoms are: stiffness (legs, neck, arms),
Veins are appearing that I never saw before, in my hands, arms, legs, feet. They are more pronounced on my ankles and are now painful, hands becoming painful as well. The veins seem to be a main problem, it hurts now when I get IVs and blood draws. Not sure if this is because I'm also becoming thin in my hands, lower arms, feet, and lower legs. I've become very skinning in my lower extremities.
My palms (bottoms of hands) are painful when I pick things up and hold things. I get more impressions/indentions from things I hold and it hurts. Same for the bottoms of my feet. The padding seems to be weak.
For a while my muscles would twitch in a particular area, face, butt, arm, Now I get twitches here and there when I'm laying down mostly. Seems like after I exert a muscle and then rest it will twitch. also some muscle tightness, cramping
Seems to be a weight redistribution lot of flab/fat in my abdomen and skinny in the extremities. I'm a thin guy, 135, never had much fat in the stomach area, now I have like a beer belly.
pain in the feet and legs when standing, standing in one place hurts, I feel better if I'm walking
joint pain (jaw, knee, wrist, elbow) and lots of snapping, cracking with slightest movement
cracking, gnashing, grinding when moving my neck
tinnitus, not healing as quickly from cuts and getting bruises
increased sweating at night, and in the feet, was never a big sweater

These are NOT ALS symptoms. You need to pick a doc and just let them continue to figure it out. ALS doesn't effect veins, ears, joints, bruising, pain when standing---see where I'm going.

I'm certainly not denying something can be wrong--but it's NOT ALS--it just doesn't fit.
 
Thanks for the replies. I was concerned about ALS because of the muscle loss, stiffness, spasms, hyper-reflexia and then the abnormal EMG.

The muscle loss, or atrophy is preceded by impaired movement (paresis) in the early stages of ALS, as portions of muscles (the infamous fascicles of fasciculation fame) lose their controlling motor neurons and become paralyzed. Not only does this cause weakness in the individual muscles (loss of power), it also causes problems in moving parts of the body throughout their entire intended range of motion.

One example of this kind of paresis would be an inability to touch the tip of your thumb to the tip of each of the fingers on that hand -- I had this as a very early symptom (couldn't snap my fingers). Another example might be uncontrollable tremors when you attempt to stretch an appendage. In my case, if I tried to stretch my index finger out to point, that finger would bounce up and down wildly. The straighter I tried to make the finger, the wilder the bounces became. Yet if I held the finger in a more relaxed posture (slightly curved), there were no tremors.

As more and more fascicles are disconnected from the nervous system (MND progression), more and more paresis sets in. Eventually, all the fascicles of a muscle are disconnected from the nervous system and the muscle is totally paralyzed and unresponsive to conscious command by the patient.

mike123, if what you have was MND and it had been going on for six months, you would be noticing disabilities of this type in your body -- especially in those parts where the symptoms first appeared. MNDs, especially ALS, are progressive; they start in one area and spread throughout the entire body. And, in the case of ALS, that progression is usually fast, in that the average lifespan for an ALS patient after the onset of first symptoms is 28 to 32 months. Throw in six months to a year waiting for a diagnosis, and half of the PALS diagnosed today won't be alive two years from today.

If you don't believe me, take a look in our ALS Caregivers Support forum and read some of the progression horror stories told there. Trust me, their stories about ALS progression are far more "representative" of how ALS works than my story is.
 
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