Need Feedback from You; The Experts

[rhythman]

First of all, I want to thank all the people on this forum for taking valuable time out of their lives to listen and offer advice to others. You make a difference and truly are heroes in my books.

This is my first post and I would appreciate any comments/thoughts on my situation as I await my first neuro appointment next month. I very much respect the knowledge of the people on these boards. I'll apologize in advance if it's a bit long.

I'm a male in my early 40's. About 8-10 weeks ago, I noticed that while eating, food sometimes would fall out of my mouth. It was regular enough to notice. Over the next few weeks, it kept happening and I simply thought that odd. That was it until 4 weeks ago, when I noticed my mouth seemed to be filled with saliva when I was talking. I had to swallow to continue to speak clearly. In the time since that began, I've had nasal voice and saliva issues off and on. During the past 2 weeks, my tongue has changed shape...when I stick it out, it's flatter, wider and when I brush it, it goes concave and I gag.

As for the rest of my body during this same time period, I noticed my handwriting has to be slower to be the same as always, and I am a bit clumsy with ALL 4 of my limbs. Two weeks ago, both calves started twitching the same day, and to a lesser extent, my hamstrings, thighs, biceps, triceps started twitching a few days later. Both calves cramped so badly this morning, they woke me up. Since the twitching started, my calves, hamstrings, upper arms have felt tight, but these were the first real cramps.

Background note (perhaps insignificant): I have had 6 'episodes' over a 30 year period where my left side would go clumsy and I would drop things, stumble and my vision would be blurred. I saw 2 neuros who did tests and could not provide an explanation. The last 'episode' was 9 years ago and brought new symptoms: both calves twitching for a few days, my tongue would not come out straight and my gag reflex was hyper sensitive. None of this lasted more than a few weeks. My GP suggested that what is happening now might be an intense episode of the same thing, but there are many more symptoms, so I think that's wishful thinking.

All that rambling (sorry) to ask a couple specific questions:

1. Would this not be an unusual onset with all limbs becoming 'clumsy', twitching, tight and cramping all within a few days? Four weeks ago, I played 2-90 min. sets of rock music (drummer) with ease. There were no limb symptoms of any kind...nothing until several days later when everything started practically at once. Last weekend, I practiced drums for 30 min., and when I got up, my legs felt like lead weights and I could hardly raise my arms to my shoulders. I appreciate that als has many, many progression patterns, but all limbs and back so tight, so fatigued so quickly (3 weeks)?

2. I'm stressed because in the past 3 weeks, I've rapidly developed practically every bulbar symptom I've ever read about: excess saliva when talking, trouble chewing, nasal voice, difficulty reading aloud, 'thick' speech, etc. These have come and gone, but I understand symptoms can be intermittant early on. This all seems really rapid too. Thoughts?

Thanking you all in advance for any thoughts. God bless!

 

[halfin]

Hi rhythman - welcome to the forums. The thing to keep in mind with these symptoms is that there are many other things that can cause them. The doctor will do blood tests, strength tests, muscle tests, possibly X-rays or MRIs, all to investigate where these problems may be originating.

Having said that, your symptoms are not unlike how mine presented. Mine were maybe a little more spread out. I was training for a marathon in Jan-May, and towards the end of that time my wife started complaining that my speech sounded wrong and "old". At the end of April I suddenly found that my tongue felt sluggish, my speech thick and slow. This was somewhat intermittent. In early May in my running log I noted that after a run, instead of having leg twitches, which I had noticed occasionally after a workout, my whole body was twitching. This has continued non-stop. By mid May I noticed that my handwriting felt strange and weak, and took more attention to write neatly. Also, after a hard month of marathon training in April, I was dead tired for weeks and just couldn't seem to recover and get strength back. So I had many of your symptoms, all presenting within a few days or weeks, although it was a very physically stressful time as I drove my body to the limit training for my first marathon.

In my case, I was in fact diagnosed with ALS in August after a myriad of tests. But there are some differences. I hadn't had any past history of neurological episodes like you describe, aside from one bout of "numb thumb" last year that was traced to arthritis in my neck area. And I don't think my symptoms came on quite as hard and fast as you describe. Another difference, maybe more significant than you might think, is that I had never heard of ALS. Not until my neuro mentioned it on the 2nd or 3rd visit did I start looking into it. Sometimes when you are aware of a disease's symptoms and start searching for them, things that you might not have otherwise noticed start to take on more significance. It may be medically meaningful or it may not, that will be for the doctor to judge.

I'm sorry I can't be more reassuring but that is the honest information I have. But I am not a neurologist and you should try not to worry unduly until you get a good thorough examination. Until they tell you it's ALS, it probably isn't. ALS is a rare disease compared to many other neurological conditions that can cause problems. It's even possible you may be suffering from a combination of different things. Especially given your history of episodes, maybe your GP is right and this will be something transient. Still it would be good if they can figure out what it is, even in that case.

And even in the very worst case, I can tell you that these forums are an invaluable resource and source of support. Feel free to ask all the questions you want, people here have been nothing but helpful and supportive. I have learned that ALS does not have to be the end of life and happiness as it is often portrayed.

But again, I would not go there yet. Try to be patient, and hopefully your neurologist will be competent and proactive, do all the tests necessary to help you get to the bottom of what is happening. And again, we are more than happy to answer questions and provide what information we can.

 

[rhythman]

Wow! Thanks Halpin for taking the time to write that long, thoughtful response...I really appreciate it. I hope that you are doing well. No matter what I find out, I will have to work to have the positive outlook of you and some many other wonderful people on these boards.

I find that I fluctuate between thoughts such as"Just go live your life as usual...odds are it's not als" and "he symptoms are identical to all the bulbar stuff I've read, so there really is no other explanation". I have always had to work at living in the present as I tend to be a long term planner with work, business, family, vacation, the band, etc.

Since my opening post, I went for a run which I do about 4 times a week (typically 30-45 min., and not really fast ). My last run Monday was fine, but tonight my calves cramped badly after 5 min. and after another 10 min., I had to stop and walk home. That's never happened. It's all so weird that literally almost every symptoms (of which I seem to be experiencing many) has appeared in the past 3 weeks.

One other thing...I did notice in July that I was mixing up words to songs I know well and calling people I know well by the wrong names. I'd sing KISS's famous '75 anthem aloud and the chorus would come out like "I ront to wock and roll all nite...". I'd call Jill by the name Jenn, and I'd call my golf buddies Mike and Rick by the names Mick and Rike. I didn't think much of it because that has happened every time I've had an 'episode' of whatever minor neurological thing I've had in the past. It's even happened at other times between episodes.

Is that 'confusion' an als symptom?

 

[rhythman]

Sorry halfin...typing too quickly and it came out halpin

 

[halfin]

No problem on the name! Actually I am Hal. And I am doing great, thank you for asking. In fact I still run (well, jog/walk) about 30-45 minutes, 4 times a week, much like you.

As far as cramps, while that can be associated with disease, it is also common for people to report cramps and twitches which don't lead to any serious problems. There is a name for it, BCFS, benign cramp and fasciculation syndrome. These symptoms are often made worse with stress. It's possible that your understandable worry and concern is making you more sensitive to some of these problems. As far as the specific issue of cramps, you can try the usual remedies that runners and athletes recommend, like a good multi-mineral supplement. I have also heard that magnesium supplements can help. Like most PALS ("people with ALS") I have quite a cupboard of vitamins and supplements these days. I've had cramps off and on but they haven't been bothering me lately.

In terms of language problems, conceivably stress and distraction due to concern over your health might play a role. I've read here that some PALS report cognitive changes, sometimes language related: mixing up words, forgetting words. This is pretty rare though. Especially given your complicated neurological history, it is hard to say how significant it is. Certainly something to mention to the neurologist.

 

[laurajh]

I am by no means an expert, just a paranoid loved one.

From everything I've read, it comes on more gradually than that. 8-10 weeks' time for all those symptoms showing up at basically the same time doesn't sound like als as far as I know.

 

[rhythman]

Thanks Hal. I am glad that you are doing well and still running.

I had read about the significance (or lack thereof) of cramps and twitching, but I think I have a heightened awareness since I've felt I had bulbar symptoms. I might not have noticed had I not gone surfing the net. Funny thing is, I Googled 'excess saliva' because I just got over a sinus infection. Five minutes later, I was reading about bulbar onset als, something I'd never heard of until 3 of weeks ago. As you noted, perhaps my symptoms would not have been so noticeable had I not read so much...not sure.

I didn't think that cognitive changes and confusion were presenting symptoms, but I wanted to get your thoughts.

You seem to be so well read and knowledgeable about this illness, I would just like your thoughts on a couple of other things that I've noticed. (Sorry to be asking so many questions, but this will be it for the evening. )

1. I've been experiencing many episodes of, what I can best describe as 'chills' and shaking. This happened every time (without exception) I had my other incidents and the familiar intense 'spasms?' have actually been comforting since they always presented with my unknown, but apparently benign, malady.

2. As I noted in the first post, my tongue has become visibly wider and flatter the past 2 weeks. I have also noticed however that I can move it around more quickly and nimbly when I stick it out now. I can make it fly around, do tricks and couldn't before.

Do those 2 statements above sound familiar as als symptoms?

Thanks again for taking time to read and respond. Sometimes, I still marvel at the internet. I'm on the East coast of Canada, and am getting great advice from someone I never met, on the West coast of the U.S. re a disease I never heard of 3 weeks ago.

 

[rhythman]

Hi Laura. Thanks for your response. I try to keep telling myself stuff like that, but I know that there are strange progressions with this disease. I am here on the boards to get advice from people like you who are well read and considerate enough to take time to 'talk' to worried people like me.

 

[rhythman]

No problem on the name! Actually I am Hal. And I am doing great, thank you for asking. In fact I still run (well, jog/walk) about 30-45 minutes, 4 times a week, much like you.

As far as cramps, while that can be associated with disease, it is also common for people to report cramps and twitches which don't lead to any serious problems. There is a name for it, BCFS, benign cramp and fasciculation syndrome. These symptoms are often made worse with stress. It's possible that your understandable worry and concern is making you more sensitive to some of these problems. As far as the specific issue of cramps, you can try the usual remedies that runners and athletes recommend, like a good multi-mineral supplement. I have also heard that magnesium supplements can help. Like most PALS ("people with ALS") I have quite a cupboard of vitamins and supplements these days. I've had cramps off and on but they haven't been bothering me lately.

In terms of language problems, conceivably stress and distraction due to concern over your health might play a role. I've read here that some PALS report cognitive changes, sometimes language related: mixing up words, forgetting words. This is pretty rare though. Especially given your complicated neurological history, it is hard to say how significant it is. Certainly something to mention to the neurologist.

I am glad that you are doing well and continuing to run.

Thanks. I have read about BCFS and as you noted earlier, perhaps it's a bit of a coincidence that twitching and cramping started within a few days of my reading about twitching and cramping. Strange. Anyway, I will continue to take my vitamins, and run and drum.

I didn't think that cognitive confusion was a common presenting symptom of als, but I wanted to get some feedback on that.

Thanks for being patient and taking the time to respond. Just a couple more things I forgot to mention (then I'll leave you alone)

1. During the past few weeks, I've had many instances of what I, with my limited vocabulary, call 'chills' or spasms where my limbs just shake and tense up. These actually are somewhat comforting since I've had them with every single episode of whatever benign neurological thing it is I've had in the past.

2. As I noted in the opening post, my tongue has become differnt in 2 weeks...flatter and less pointy when I stick it out. A strange thing that is obvious now though is that when I stick it out, it's more moveable than it ever was. I can quickly manouver it up, down and sideways and I could never do that so quickly before.

Have you ever experienced or read about either of the 2 comments above?

The internet still amazes me. I'm on the East coast of Canada, 'talking' with someone on the West coast of the U.S. about a disease I never heard of until 3 weeks ago.

 

[olly]

hi rythman.
did you have any tests or mri's during your past episodes?
you do have something wrong but als is a diagnosed after ruling other neuro diseases out.
its sounds like your having relapsing/remmiting episodes like in ms.
have they considered ms? ms can sometimes cause bulbar symptoms and definately twitching.
another possibility is mitochondrial disease,this can cause all kinds of neuro symptoms one being stroke like episodes. this is diagnosed by genetic testing or muscle biopsy.
just two possible causes that can cause relapsing/remmiting episodes over many years.
please let us know how you get on at your appointment:smile:

 

[rhythman]

hi rythman.
did you have any tests or mri's during your past episodes?
you do have something wrong but als is a diagnosed after ruling other neuro diseases out.
its sounds like your having relapsing/remmiting episodes like in ms.
have they considered ms? ms can sometimes cause bulbar symptoms and definately twitching.
another possibility is mitochondrial disease,this can cause all kinds of neuro symptoms one being stroke like episodes. this is diagnosed by genetic testing or muscle biopsy.
just two possible causes that can cause relapsing/remmiting episodes over many years.
please let us know how you get on at your appointment:smile:

Hi Olly

In 1992, the neuro spent 10 min. with me and told me I had a type of migraine without pain. In 2000, the neuro sent me for 2 mri's, did bloodwork and other tests and said that all were normal. He said there was nothing suggestive of MS and mri was completely clear.

I appreciate your suggesting other possibilities. Until 3 weeks ago, I was familiar with als (but had never heard of bulbar onset), but had never heard the terms multifocal neuropathy, mitochondrial disease, etc. I went online to search 'excess saliva', and found myself reading many stories of people who have had bulbar onset and those symptoms seemed to match mine. As I noted in an earlier post, it seems as though I've had every bulbar symptom during the past month. I'm also not a person who is a hypochondriac, looks for symptoms or goes to a doctor often. I typically am very positive and think any symptoms I ever get are likely not serious. It's taken a number of symptoms coming on quickly for me to be troubled.

I do try to keep telling myself that it could be whatever neurological issue I've had in the past, but those episodes did not involve speech problems, nasal voice or all limbs. Sometimes though I am oddly comforted by all limbs being clumsy and cramped at the same time. Although not impossible, I feel that this would be a rare presentation...at least that's what I keep telling myself.

If you have a minute, I'd appreciate your thoughts on 2 points I made in an earlier post on this thread.

1. I keep having 'chills' and body shaking episodes where I shudder and shiver as if I'm cold (but I'm not). I've had those every time with my other episodes, but perhaps they are als symptoms too.

2. My tongue is flatter, wider and it goes concave and I gag when I brush it, but it is more nimble than before. I can flick it up and down and side to side much more quickly than ever before. Odd?

Thanks for taking time to write.

 

[olly]

hi rhythman.
i was tested repeatedly with mri's during the first years i got ill.
in the early stages it can be hard to diagnosed and a mri needs doing every six months .
ofton a lesion shows up sometime after an ms attack then can disapear,this is because in the early stages the brain is more able to repair the damage.
10 minutes is very quick for a neuro exam,it can't have been a very thorough one.

i can't comment on the tongue issue it does sound odd.
as for chills,yes i have had them and i think others have mentioned them before.
i think there was a thread on the general forum about this a while back.

 

[laurel]

Hi Rhythman,
Your symptoms have more in common with MS than ALS. I have secondary progressive MS, and hubby has CIDP. It sounds like another visit to a neurologist who specializes in MS would be a good idea, and have a lumbar puncture and mri repeated. MS plaques take time to develop in some people so the mri may pick them up now if its been years since your last one. Good luck.
Laurel

 

[halfin]

Here's another data point I found that should be encouraging. Bulbar (mouth) onset ALS is very rare among younger people. Your symptoms are largely bulbar so you would tend to fall into this category. I found a study, http://www.enmc.org/uploaded/FILES/Eur.J.Neurol.Zoccolella 2006.pdf , which examined 130 PALS and not one of them with bulbar onset was younger than 45. You say you are in your early 40s so probably younger than this. So if you do have ALS, which is itself a very rare disease, you would be an extremely rare subtype to have bulbar involvement right at the beginning, at such a young age. This would therefore point away from ALS as an explanation, which would be a good sign.

 

[rhythman]

Olly and Laurel

Thanks for the replies and I hope you are both doing well. Your kindness is appreciated.

I have always thought MS might be a possibility with my other 'episodes', but they always involved the left side of my body (although the last one saw both calves twitch too). I didn't suspect MS this time, because all 4 limbs are involved and bulbar symptoms with voice and tongue issues. I thought MS was always 1 side only and never involved any bulbar symptoms.