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rhythman

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Hi All

I only posted a few times on this wonderful forum, but I promised a few weeks ago that I would not post about my situation again until I saw neuro and had tests. Here's an update.

All bloodwork and mri were normal, but now my neuro will be off work for awhile (illness), so I have to get referred to another. All this could take a bit of time.

History: The neuro asked if there were any symptoms of any kind before late August (which is when I told him things started). I told him that I did have 2 bouts of swallowing and ear pain which was quite intense. In both cases (March and June), the doctors at the local clinic suggested eustachian tube dysfunction. I asked the neuro if those could have been early bulbar symptoms. He said "Possibly-especially since you are having speech/swallowing problems-but not really common."

The symptoms and their progression as of late has me confused. The only reason I even consider als at all is because of all the bulbar symptoms. I appreciate that they can come and go, so the coming and going of slurred speech, chewing problems, nasal voice, swallowing problems, excess saliva and choking episodes (dry foods) that I've had for 3 months suggests als based on all that I read.

I know that there seem to be an infinite number of onset patterns and progression rates and patterns, but I'm trying to convince myself that some of my symptoms might point away from als. Specifically:

1. Progression rate of limb issues. Seven weeks ago, I could run 40 min. and drum for a 90 min set with my band. Now, I can not run for even 5 min. without cramping, knees hurting, and so much leg fatigue that I literally stop...whether I want to our not. I can't drum for more than 5-10 min. and arms and legs simply won't work...they stop too.

2. Symmetry/Bilateral. All limbs are losing strength and coordination at the same rate. I went to the gym yesterday, and could only do one third the number of reps per set (4 instead of the 12) that I was doing just a few weeks ago. Same weight...fewer reps. Both hands are equally clumsy.

3. Numbness/Pins & needles/Limbs 'asleep'. I have read that, despite conventional wisdom, these issues can be present with als. I have awakened nearly every night for 4 weeks now with at least 2, and sometimes all 4, limbs 'asleep'. I wake up on my back and am immediately aware that my forearms, hands, calves and feet are 'asleep'. I have to move them to get feeling back. When I wake up in the morning, I repeat the process.

4. My tongue completely changed appearance in a few weeks. Today I am speaking really clearly, but my tongue doesn't even look like the same appendage it did a few weeks back. It was thick and always went 'pointy' when I stuck it out; now it looks like someone flattened it, made it really wide and it folds into a 'U' shape when I stick it out. I remember a post by BethU to another person where she suggested that speech problems should preceed obvious tongue changes. My speech issues come and go, but my tongue has changed big time.

5. Pain. Not severe, but calves, arms cramp, knees, elbows and wrists hurt. Knees are worst. Climbing and decending stairs hurts so much, it's ridiculous.

Thoughts?

Thanks for listening. I didn't want to bother everyone again, but with worsening symtoms and a neuro who'll be out, I might be in limbo for awhile and would appreciate even very brief feedback. Thank you. :)
 
Hi rhythman -

That's too bad your neuro got sick. I think the next test will be an EMG which should be very informative. The nerve conduction velocity part of the test might shed light on your numbness, and the needle EMG will show if there is motor nerve damage.

ALS is very different for every person, and as you know it is a disease of exclusion. They have to rule other possibilities out and I don't think anyone here can do that. Your sensory issues are not a typical part of ALS, although some percentage of people do have that kind of thing. The bulbar symptoms coming and going is also probably somewhat unusual; ALS symptoms tend to come and not go, unwanted guests.

Weakness of course is the hallmark of the disease, and sometimes, yes, I think it can hit all limbs more or less at the same time, although probably more commonly it starts in one area and spreads. My first symptoms were bulbar, then my hands started feeling weak, and in the past month my legs have started to get stiff and weaker, all within about 6 months. Can still jog a little but I get tired quickly, similar to what you are describing. My joints are getting sore, but mostly my shoulders and hips, pretty much the complement of the set of joints bothering you. Put our good joints together and you'd have a healthy guy.

I guess the bottom line is that your symptoms aren't really typical for ALS, but don't rule it out either. I remember you mentioned you had a history of brief neurological episodes in the past. To me that would suggest MS, but that usually shows up in the MRI. However sometimes it doesn't, I've read. There are also nerve diseases that can affect both sensory and motor nerves, which would seem to line up more with your symptoms. I think the blood tests look for those but again they can't necessarily catch everything.

Sorry to be vague, I think the bottom line is still that you will have to wait for more tests. I know how anxious a time that is, but I hope your symptoms do not become too uncomfortable and that you are still able to get out and enjoy doing what you can.
 
Hi Hal

Thanks for taking the time to post...I appreciate it. It seems like my situation might be similar to yours, except that you're about 10 years older (53 right?). :) I do understand that every person has a unique set of circumstances and progression however. My situation could mirror yours or could go in a complete different direction.

I've been a bit overwhelmed by the apparent rate of progression and barrage symptoms of whatever it is I have. I've tried to heed my wife's advice and just live life and try to put things at the back of my mind. If I stop to think of what I might have and what might happen to me, I get too upset. It's not a good use of time or energy and it puts a damper on the day.

I hope that things with you progress slowly. From what I've read, the disease can slow and in some cases pause for years, so I hope that is the case with you. I know that you love running, so being able to do some jogging for a long time would be special.

Take care of yourself.
 
History: The neuro asked if there were any symptoms of any kind before late August (which is when I told him things started). I told him that I did have 2 bouts of swallowing and ear pain which was quite intense. In both cases (March and June), the doctors at the local clinic suggested eustachian tube dysfunction. I asked the neuro if those could have been early bulbar symptoms. He said "Possibly-especially since you are having speech/swallowing problems-but not really common."

rhythman,

In an earlier communication that I had with you, I warned you that your obsession with ALS might cause you to exaggerate symptoms that you know are common to ALS and to ignore or underplay symptoms that don't go with ALS. Here, it looks like you are doing exactly what I warned you against. In your earliest posts on this forum, you stated that many of your symptoms had occurred and then stopped over several distinct periods in the last 30 years. Did you also tell that to this neurologist as well, if for no other reason that it will be included in the report he will forward to the neurologist who will be taking over your care? If so, good for you. If not, why not? It seems to me that you would rather be proven right in your Google-fu than be accurately diagnosed. Am I wrong?

The symptoms and their progression as of late has me confused. The only reason I even consider als at all is because of all the bulbar symptoms. I appreciate that they can come and go, so the coming and going of slurred speech, chewing problems, nasal voice, swallowing problems, excess saliva and choking episodes (dry foods) that I've had for 3 months suggests als based on all that I read.

You are confused because you do not have sufficient training to evaluate your own symptoms or to interpret the medical information you are finding on the Internet. It takes a neurologist about five to seven years after medical school to become adequately trained. For those neurologists that specialize in neuromuscular disorders like ALS, it takes even longer, simply because the cases are fewer and further between unless the neurologist is working in a specialized clinic.

Why do you insist on believing that a few weeks of hit-and-miss Internet research is the equivalent of ten or more years of specialized medical training and experience? The best thing you can do for yourself is get off the medical sites on the Internet until you have a firm diagnosis. Let the doctors do what they are trained to do and quit trying to steer them. How would you like it if one of your doctors jumped up on stage in the middle of a set by your band and demanded that he take over on lead guitar and lead vocals because he read a review of your band in the local paper and that was all he needed to know to make your band successful? Wouldn't you be just a tiny bit skeptical about his talent, and maybe even his sanity?

I know that there seem to be an infinite number of onset patterns and progression rates and patterns, but I'm trying to convince myself that some of my symptoms might point away from als.

The information you are using to determine that the symptoms you list point toward ALS is basically anecdotal statements from people that have been officially diagnosed with ALS or related disorders. What those individuals have reported may or may not be related to ALS. It is possible for a PALS to have more than one disabling condition. It is also possible that the average PALS, lacking medical training, may be confused about which symptoms in his/her body is caused by ALS and which symptoms are caused by other conditions.

Using myself as an example, I have had type 2 adult onset diabetes for the past 15 years. Uncontrolled and untreated diabetes can cause a large number of pathological conditions, including neurological symptoms -- do a Google search on diabetic neuropathy -- that are absolutely consistent with some of the sensory symptoms you report. Have you been tested for diabetes? Do you know whether the PALS who have claimed that they have sensory nerve symptoms were diabetic or had been tested for diabetes? Without that kind of information and proper testing for other diseases that cause sensory neuropathies, there is no way that anyone can definitely state that sensory nerve pain is one of the possible indicators of ALS. Conventional wisdom is the norm -- everything else is an unexplained outlier. Anecdotal evidence from PALS is pretty low on the list of medical and scientific reliability, whether we like it or not.

Here's another example from my personal file. The medical condition that caused me to develop diabetes also causes me to have abnormal blood lipid profiles -- high total cholesterol, high triglycerides, bad ratio of HDL cholesterol to LDL cholesterol. The standard treatment for this blood lipid disorder is the use of statin drugs. In my case, I took Lipitor for about three years and Mevacor for three years -- a total of about six years of statin therapy. Guess what a couple of the most common side effects of using statin drugs are? Muscle pain and weakness, for one, and various types of neuropathies for another. While I was taking statin drugs, I experienced occasional bouts of muscle pain that never stayed long, so my doctor saw no need to discontinue the statins.

Coincidentally, the places where I had the most frequent episodes of what I thought was statin-related muscle pain are the parts of my body where ALS seems to be most severe. Early symptoms of ALS? Statins caused my ALS? Sheer coincidence? Who knows? But, now that I've said it, I expect that in the future, some referee from Dr. Google will read this post and try to figure out a way to tie diabetes and high cholesterol, in conjunction with statin therapy, to their twitching and excess saliva to convince themselves that they have ALS. However, they had best not cite my username or this post as their source for their conclusion, because I'm calling BS and hogwash on them in advance (take that, Dr. Googlebot and the forum search function :lol:).

Other people that I know -- family members, in particular -- have reported neurological symptoms after beginning statin therapy, most commonly as an sudden numbness/loss of sensation in a part of their body. In the case of one female relative, she developed a numb area that covered nearly the entire sole of one of her feet. That numbness caused her balance to be unsteady and resulted in several falls, along with staggering and stumbling. When she brought it to her doctor's attention, he discontinued statin therapy and she regained some of the sensation in her foot -- not all of it, but enough to prevent most of the balance issues she was having.

Let me let you in on a little secret in the PALS community. None of us really knows what the earliest symptoms of our ALS were. The only thing we know for certain is which symptom caused us to bring it to the attention of one of our doctors. It's only after we have a definite diagnosis and learn about what the disease is and how it progresses that we can look back and see earlier symptoms that we shrugged off as "rheumatism" or "boy. i'm a klutz today'' or "I had a senior moment".

Given that we are reviewing that history many months and, in some instances, years later, the reliability of our testimony is questionable at best and totally worthless at worst. I'd hate to think that somebody was stressing themselves to levels that some of you guys do over a remark I made in passing that I can't tie directly to ALS. So, knowing what I know, I'm telling you: Don't do it! If your case doesn't fit the conventional wisdom, it's probably something other than ALS and most likely treatable to some degree. Stop borrowing trouble and get thee to a doctor. Come back here when you have a diagnosis and not before.

Thoughts?

Thanks for listening. I didn't want to bother everyone again, but with worsening symtoms and a neuro who'll be out, I might be in limbo for awhile and would appreciate even very brief feedback. Thank you. :)

Enjoy being in limbo. Trust me, being in limbo beats the heck out of having a certain ALS diagnosis. You can only imagine how devastating the loss of deniability really is. Do what you enjoy as often and as enthusiastically as you can. Get away from the medical websites on the Internet and save your "playing doctor" for those private moments with your wife (maybe a sexy nurse's outfit in her Christmas stocking this year).

Peace to you,

trfogey.
 
Hi Rythman,

Just to give you a heads up on what to probably expect from the nuros. I have a similar background to you, and thus far from the nuro's that I have seen, they basically are in a wait and see mode. The fact that you had neurological issues in the past and they resolved over time plays a big part in their assessment. The probability of developing some new disorder is low. You may have some new symptoms on top of the previous symptoms, but most likely it's the same disorder you had previously just affecting another part of your body.

When they looked at my symptoms, and history, they have no clue what is wrong, but don't think it's ALS (The exception was the neurosurgeon who bounced back my diagnosis to the general nuro asking for an EMG and questioned if it could be ALS, but the neurosurgeon is hardly the person to make this call) The reason they don't think it's ALS is due to sensory, onset, rapid development, waxing and waning, past history etc. (Sound familiar?) They aren't sure what it is, but are somewhat confident in what it isn't.

After they do the EMG, MRI's, bloodwork, and standard clinical tests, their really isn't much else they can test for. My guess is that your EMG will probably come back normal. Their has been allot of controversy here on the quality of EMG's, but from what I have read, if a qualified Dr. performs it, it is accurate and would rule out ALS along with several other disorders.

My nuro asked me to do a single fiber EMG and I'm doing that next week. He said he thinks it will come back normal, but said it's worth doing. I had no clue what that was and you don’t see it mentioned much in this forum, but it can detect several other disorders which a standard EMG can't. This is a fairly new test and is only performed in certain hospitals. If possible, perhaps you can bring up that after your EMG. It doesn't hurt to ask. At the end of the day, something is wrong, and these new tests may be able shed some light on what it is.

In the interim, have some comfort in that what you had previously is most likely what you are experiencing now, and that you may recover in due time.

P.S. Yes, Beth is right, your tounge can't change shape and still function normally, and Bulbar onset really doesn't happen to a 42 year old male. It occures at 2 to 1 ratio to females with an age of onset of 65 with a tight variance. It is extreamly rare to occure in a male under 50 years of age.
 
Thanks for the lengthy replies. I've been offline for awhile because I am trying to stay away from the internet more.

I've been careful to tell doctors exactly what I've been experiencing and not what I've read or think that they want to hear. I told the neuro and ent about past episodes, but this is different. I'm not doing the Dr. Google thing anymore, but I do get some comfort coming here periodically; I'm not sure why. I know, as trfogey suggests, that I should just let the doctors do their thing, but sometimes the time between appointments and tests is tough and I just need a place to ask questions/vent. I feel that there is so much experience and knowledge here, people can relate to what I'm feeling and comment on some of the symptoms/issues.

Today, I saw a very good ent and he was really concerned about the tongue faciculations. I told him that I had had some neurological issues before (left side only) but he just shrugged and said "I have to deal with what I see now". He said tongue faciculations ALWAYS mean neurological problems, usually als, and I should get back to the neuro asap.

After this, I told him that I have pain in my feet (bottom) all the time, I wake up most nights with all 4 limbs asleep and my feet fall asleep while sitting, driving, etc. I asked if this could point away from als and he said "I doubt it, but I'm not a neurologist."

I know Al and a few others have said they had tingling, especially at night, but I still am hoping this points away from als. Despite this 'scary' appointment with the ent, I'm still hoping for a clean emg and ncv soon.
 
There are too many other things that need to be ruled out yet. I'd put ALS on the back burner or better yet, forget you even heard of it for now.

My philosophy has been to think it is all being caused by a pinched nerve. You'll sleep better and so will those around you.

Zaphoon
 
Thanks Zaphoon. I was doing quite well convincing myself it might be something else, but I had an ent this week who 'diagnosed' me with als. I started a thread yesterday called "ENT thinks als" to explain what that 'lovely' doctor visit was like. :)

Thanks again and take care.
 
rhythman... I think everybody on the other thread said it all, but I just want to chime in. ALS cannot be diagnosed by an ENT, no matter how smart he thinks he is, and even with the best neuro in the world, you need a second opinion. It requires very specific symptoms, none of which this ENT has tested you for.

I had a doctor throw a diagnosed at me (for MG) with nothing but his first impression to back him up ... no tests, nothing ... and it was irresponsible to do so. And he was completely wrong.

I know this has thrown you for a loop ... it would anyone ... but any doctor (not even a neuro!) who would throw out a diagnosed of ALS like that proves he is a quack.

Hang in there till your neuro gets back and you're in the hands of an expert again.
 
Thanks for the support Beth. I hope you are well.

I knew that I had some troubling symptoms, but I have had some in the past as well. I was floored because he was so sure...tongue fascics swallowing issues and voice issues = als...period.

I was upset because I assumed that since he's been doing this for years, he'd know. He was just so certain and matter of fact...it sucked. I understand that he might be right, but it's been nice to read from experienced people on the boards that he's not necessarily correct.
 
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