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As some of you have read in my posts..........I've been having difficulty w/ the "I think i have ALS syndrome". I wish I never googled the internet. Its been like a crazy nightmare.


I started w/ widespread muscle pain, followed by twitches, Fatigue, and muscle cramping. Its been pretty continual for 6 weeks now. I dont get a break.


I've seen 2 nueros who both seem to think nothing of my brisk knee reflexes and absentee Babinski reflex (Which I know I had at some point).

I had an MRI Of Brain
MRI Of C-Spine
An EMG Upper & Lower


I even saw a Rhematologist who feels this cant be Fibromyalgia because I only had 1 trigger point. She said its more likely to be neurological & the symptoms just haven't manifested completely.


Well, I couldn't get this off my mind & I am embarrassed to say, Im still having difficulty but have to start somewhere.

I made an appointment at Beth Israel here in NYC w/ the Director of ALS. As soon as I started telling him my story.........he said, in a reassuring, not nasty way........."Doesnt sound like a typical ALS story". He checked me out. Thought nothing of my Brisk reflexes. (For those of you who mentioned, TWO brisk reflexes are not a concern) were right.
I was (& secretly still am) concerned about the absent Babinski. My feet do nothing. They used to. I didn't want to question & requestion everything he said, so I just asked if not having a Babinski reflex was a neurological symptom. He said "you have a normal Neurological exam". He looked over the EMG I had done 2 weeks before & did another one. He told me it was normal & I only had Carpal Tunnel syndrome. This, of course, had me think "Something was not normal" How come the 1st office didnt mention that to me? Could it be the ALS starting & it "LOOKS" like Carpal Tunnel Syndrom? Gosh! This is a crazy, sick way of thinking & the sad part is, I KNOW IT!

I dont know how or why & Im not even going to put myself thru the torture but when i asked him, if this could be the beginning of ALS & if I still have these symptoms in 6 mo's should I worry, He said no. He said, if I still have questionable thoughts of ALS in 1 week, I may want to consider a SSRI (Anti dep.) to help w/ compulsive thoughts. I'm assuming EVERYONE who walks in his office has a TUFF time walking out feeling reassured.

Why? Why is it so hard to accept this wonderful Information? Im still asking myself this.
For those of you who have been Dx'ed (AND I have spoken to SOME PRETTY DAM terrific People here) you gotta be thinking............What is wrong w/ thesee people!? Its like a sickness. I look at things differently now & my heart wishes I could do more! Its unfair.

I wish I could say, Its completely out of my mind but i'd be lying. I am trying to let it go though & remind myself that the DIRECTOR of ALS (Someone who sees this ALL DAY) told me, I dont have it. Its hard though when None of my symptoms are letting up.

I guess, im trying to pass the info hoping it may help someone else.

I pray for all of you. I pray for me & I can NEVER forget the support Ive gotten here!
I think & Wish real hard for a time to come where I will truly, completely have these thoughts out of my head.
I hope I'll find a reason for this widespread muscle pain, the cramps, twitching, ect in the meantime because I would be out of my mind to continue thinking its MND, RIGHT? :roll:
 

BethU

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Unknown ... I really feel for you, having to go through this anxiety and fear. I, too, hope you find the cause of your symptoms ... because they are NOT symptoms of ALS.

I don't know why you have fixated on ALS, when your symptoms don't relate, but your neuro was right ... if you are still worried about ALS after all this reassurance, there is clearly something else going on psychologically that perhaps anti-depressants or some counseling could help.

I hope you can put this behind you and start living again, and enjoying this precious time with your child.
 

Marjorie R. Wilcox

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Unknown,
I don't know if this helps much, but I have been reading your posts and have been concerned about you. I want you to know that I have been under a great deal of stress
because of many circumstances in my life and I started having twitches and muscle aches, stiffness and popping joints, heart flutters, and trouble holding my one eye open. I also had trouble thinking my words and pronouncing them. I was told by the optomologist that did my yearly checkup for new eyeglasses that the trouble keeping my eye open was stress related. Since I quit work and have gotten more rest, the joint popping and stiffness has subsided. Also, since I perspired so much on that job that was so physical, I have now alleviated the possibility of being dehydrated.... so the muscle aches have subsided too. I have relief now from sciadica and other pains. I could have thought that I was in early stages of ALS or some other motor neuron disease. But I am not. The rest has cured all my ailments in one month. Be glad and believe that you don't have ALS. My husband does, and his symptoms absolutely do not coincide with yours. Good luck, and God bless. Marjorie
 
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BETH & MAJORIE:

Thank You! You all are such wonderful people! I truly mean that! I suppose what makes this difficult (letting go of the MND thoughts) is ...........And this is what led me here to begin with...........If all the other tests came back negative, MS, Lupus, arthritis, lyme, ect........whats causing it? And so the viscious cycle begins!

I am making a HUGE effort though & today (thats all that counts, right) am ok. I am taking this one day at a time because as you both saw, I was about to lose my mind, completely through fear.

I dont feel well.........I do hope I find out whats wrong too. My entire body is sooo tendor & crampy & yes, as I type this, Im just twitching away but I've got myself together, for today.

I really think each of you here on this board are special people!
Rachel
 

awieleba

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Hi Rachel,

I can relate to how you feel, believe me. I have been to the als spec, emg, muscle biopsy and still no diagnosed. I do hold on to that. I have a hard time letting go of the 'why' my body is behaving this way. I just dont know and nor does my als doc whom is also a researcher and very intelligent. Well, actually she says it is a mixed connective tissue or just body recovering type thing that is not showing up in tests? I know it is hard to believe. I just have to and Yes, there are days that I just cry it out or think the worst.

It is hard to move on. But LIke you said, you just make the effort to get through the day. I took my 3 kids to the mall and movie (with hubby) my baby cried in madagascar, so I took her shopping. Well, that did not suite her fancy either, so I ended up carrying her in one arm and pushing the double stroller in the other! Okay, this is not easy for a normal person let alone me! my ankles rolled like 4 times, I did not fall. I was sweating and my muscles were shaking and finally the movie was over and met the rest of family at dinner.(thinking I could relax and have a cold beer or cold anything) Then she spilled a thing of water and threw 3 plates on the ground, my 7 yr old let his balloon go and climbed on table while we were distracted and my 4 yrs old was crying because he was tired! This is my every day life! Guess what? I love it BUT it is hard for my body these days. I feel like "hey, it hurts like h**l but I am doing it', so maybe it is not als. BUT like you I worry about the beginning of it.

what I have learned is that we just cant waste time in the fear. Yes, it may turn into something or It may not, or it may be this way for awhile. We dont know. We just have to love and live life while we can. Let out those cleansing tears like I do and then MOVE ON and love your family.

I trully and lovingly wish you the best during this time as I can relate to you.

blessings

april
 

wright

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Yes, I would let go of ALS considering NOT ONE of your symptoms points to it, AND you have had two neuro's tell you that you don't have it. What more do you want?

I'm not going to give you the "kum ba ya" stuff that you've been getting on here, because it obviously isn't working. I think you need a kick in butt to make you realize you DON'T HAVE IT and if that doesn't work, then meds and counseling are in order.

Go enjoy your life and stop with this non-sense.
 

CindyM

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"kum ba ya"

Wright: US? Kum by ya? LOL, you must have been over-hearing a conversation AL and I had awhile back. I called myself the "touchy-feely" one around here! :-D
 

BethU

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Hi, Wright ... You're so brainy and brilliant and know so much about medicine, yada yada yada, and you are so generous to spend your time setting us all straight ... but it seems to me that if you really tried hard, you could manage to answer questions without disparaging the other members of the forum who are also trying to help.

Ten days ago, this woman was talking about suicide. I know you're not into psychology, but that is something that MUST be taken seriously. NEVER IGNORE A THREAT OF SUICIDE. THAT SHOULD BE TAUGHT THE FIRST DAY IN MEDICINE 101. She was crying out for help. You may be the kind of guy who stands on the sidewalk yelling "jump!" at someone on a ledge, but I think it's waaaay out of place on this support forum.

I've seen plenty of "tough love" in 12 step programs and other support groups ... and 95% of the time, it's an excuse for bullying and hostility. Some people do need a kick in the pants. Some people need kindness.

It must be the Christmas season, since we're all getting edgy. But since you're not into "kum ba ya" or touchy feely stuff, I thought I'd give you a kick in the butt back. Lighten up. You're not a shrink. You don't have ALS. This is a support group for people who do have ALS. Don't disparage the PALS on this forum. Please continue to help us ... we need someone with your background and knowledge ... but cut out the Grinch crap.

I'll probably be apologizing for this later when my lability meds kick in ...
 
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suzannj

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Hi "Other Brian's Mom" :)
Whoa. Now I have to say, I am taking comfort in YOUR message. (Can I get a "Suzann You Terrible Hypocrite! LOL) My latest malady? Tremors. What? When it first happened I chalked it up to a fluke, but now it's happening more frequently. I was at work and resting my right arm on the desk while holding a pen and my lower arm & hand started shaking super fast. In another position my left leg was doing it. I was on pooper-scooper duty in the back yard yesterday, squatted down maybe 15 times, and today my right thigh is so tender and sore and feels like I was doing squats with 150 lb. weights all night. Of course, the twitching has not let up a bit.

And now? Yes, worried sick about ALS lurking in the background that just has not been detected yet. So, I signed onto the Forums, read your post, and thought "Okay, I'm okay, I'm okay, I'm okay, because now Rachel went to an ALS Specialist in NYC, our symptoms mirror each other so closely, and Rachel does not have ALS, so neither do I". I'm REALLY GLAD you came back and posted your update! Thank you! :)

And, not having a specific diagnosis is indeed extremely frustrating. Just like on House the other night where the patient came in the ER with a gun because he'd seen 16 doctors and still had no diagnosis, extreme for sure, but I can relate! LOL Why did I start twitching one day out of the blue when I never had before? Why does my right leg hurt and feel so tired most days that I limp? Why do I seem to get fatigued so easy? Why does my leg cramp? And now, why the hell am I having tremors? I wish I knew for sure.

April: I am so sorry that I laughed a little at your post :) Because I can SO relate and I only have ONE child! You painted a very good picture of your mall experience....who would have ever thought that going out to eat could be more stressful than cooking dinner at home? LOL We just went out to Friendly's (very casual restaurant) the other night after doing a bit of Christmas shopping. Thank God it's pretty kid-friendly because Bryan spilled his drink, kept standing up to look at and "talk" to the people behind us, used his crayons on the mirror, and last but certainly not least: As he's still learning to talk he cannot really say his "L's" yet. And, he has become quite fond of playing with a mini-grandfather type clock in our living room. He stood up, and quite excitedly started yelling and pointing at the big clock he spotted on the wall at the restaurant......only it came out as "Momma! I see a big cock! Big cock right dare (there)!" I have to say my husband and I just started cracking up laughing! :)

Gotta run, take care today everybody,
Suzann
 

wright

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Beth

You don't owe me an apology and quite frankly, I don't owe anyone an apology on here either. Please tell me what I said in my post that disparaged a single person on this forum, especially any PALS? All I said was that I wasn't going to take the "kum ba ya" approach that this person was getting, because it was clearly not working. I didn't say that what had been said to her prior to my post was a bad thing; all I said was that I wasn't going to fall in line.

This woman was talking about suicide because she thought she had ALS. Well she doesn't have ALS and she sounds much, much better to me because of that news. All I was trying to do was make sure she didn't go back to that dark place, because it appeared to me that she was questioning her neuro's.

If you want to keep being all "touchy feely" and bang your head against the wall, trying to convince people on here that obviously don't have ALS . . . people that just won't LISTEN to us or more importantly, their neuro's . . . that they don't have ALS, by all means, do so. I for one choose not to do that because sometimes it just doesn't work.

P.S.

I am into "touchy feely" when it is appropriate. However, there are times when it simply isn't appropriate. Oh, and by the way, I'm not edgy at all but it sure sounds like you are.

P.S.S.

Don't tell me who you think I am or what I do or what I feel, because you don't know me at all.
 

Al

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Well now! Everyone's spoken their piece(peace) so hopefully everyone's meds have kicked in and we can put this beast to rest. It's Monday, 6 inches of new snow out there and I feel guilty as hell that Lee has to shovel because I can't. Sooo let's try to keep it cheery OK?

AL.
 

laurel

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Okay here goes my two cents <g>. I worked as a registered nurse for over 30 years and primarily most of the time was in emergency psychiatry. Beth is correct about never ignoring a suicidal statement. But honest reality oriented feedback is extremely helpful to those that are ruminating about their fears to the point of immobilizing themselves. If more gentle reality oriented feedback was given to people some of the wheel spinning would stop and people could get on with their lives. Beth I have seen more people respond to Wright's honest forthright approach versus any other. Believe or not if Wright was a therapist, more people would wind up in his practice versus the type of therapist who just listens and doesn't give helpful feedback and just allows the patient to vent without any direction. I would say Beth you are correct about being careful not to smack someone down when they are voicing suicidal thoughts i.e. let them vent and give support and then when they feel in more control go with reality. But I didn't perceive any harshness from Wright in any sense. The written word is so easily misinterpreted or interpreted so differently by all of us. We need Beth and Wright--both of you are wonderful!
Laurel
 

BethU

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OK, world ... just a last word and I'll shut up. The "kum by ah" was clearly a snarky put down of messages others had been sending (including me), and that was what I was referring to.

The information could have been given straight without a snotty little dig at others who are trying to help, too. Sorry, if you don't like a kick in the butt, Wright.

Enuf.
 

irishbull44

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OK, world ... just a last word and I'll shut up. The "kum by ah" was clearly a snarky put down of messages others had been sending (including me), and that was what I was referring to.

The information could have been given straight without a snotty little dig at others who are trying to help, too. Sorry, if you don't like a kick in the butt, Wright.

Enuf.

I am not a frequent contributor here on the forums but I read through a large number of the posts and find these boards to be very helpful as I make my way down this poorly lit path called ALS. Each of us is different and we each deal with what we are going through in a number of different ways. What I like about this site is that even when their is a disagreement the thread does not turn into a flame war or a name calling contest and I am very grateful for that.

Having said that I would like to say that in my experience it is always a good idea not to read tone or intention into written threads/posts/emails. There are some obvious exceptions to that but as a general rule I try and stay neutral and assume the poster is as well. I have always found Wrights posts to be good ones and while I can see where they might be considered "short" and "gruff" by some readers but I am sure that is not what was meant in this case. I know that I do not understand why some people seem to almost want to have ALS and instead of being relieved when they are told they don't have they seem disappointed. That drives me up the wall and I have been sorely tempted to get more than a little "snippy" in a reply but have avoided hitting that send button. If Wright says the post was not meant to be snippy, mean, or short then can we not give one another the benefit of the doubt and focus on the more important issues at hand? We each have our good and bad days and we each have something to offer to the folks who read our posts.

Again thank you all for taking the time to share your thoughts, experiences, ideas and support. If we were not all truly concerned then I don't think we would bother visiting or posting on this site.

Cheers, :)
 

ktmj

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Well said irishbull.

I came here looking for help and have generally found it. I do have to wade through some stuff, and we all have to take what is said on the internet with a grain of salt.

Most people are here because we are very concerned and undiagnosed with anything, which is a very traumatic experience to say the least. Some here are diagnosed which has to be a daily attempt to fight the good fight.

Thank you all for your contributions - as a rule this is one of the most informative places I have ever found about neuromuscular journeys.

I think most of us have right to be a little snippy every now and then, or we would not be here.:)
 
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