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CB1977

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31yrs old, good shape, dont smoke or drink and workout often.

Hello- I posted once before last week but really only got one response (probably because my post was to long). I promise I am not wasting anyone’s time; I just really need some answers.

I have had issues for 2.5 months. Started with feeling of extreme fatigue and painful stiffness in my back and neck. A co-worker noticed that I also had tremors in right hand (I passed it off as stress). Around week 4 I started getting weird feeling in my throat (like spasms or twitching in my throat and like something might be stuck in). Same time I began having neck pain in the ligaments and muscles in the sides of my neck. A few days later I started feeling strained to talk. Voice sounds horse and strained. I wake up sometimes and feel like airway is tight and once I cough up the mucus I am OK. I persistently cough to keep mucus out of my throat.
Week 7 I woke up one night and was having full body muscle twitching...legs, hands, arms, torso, face, throat, everywhere (very scary). This has continued. Twitching is always there, day and night, but is much worse at night. It even feels like it inside my chest cavity and throat. I did not find out or research the symptoms to ALS until after the twitching began so this is not in my head.

I have been to the doctor (GP) about 10 times and have had a ton of tests done (blood, CT of head, endoscopy to look for acid reflux) all coming back normal. I am going to go to a neurologist but not for almost a month.

Does this sound like ALS and the way it progresses? Does this sound like Bulbar Onset? If you have experience with this disease, please give my some input.

Should I go to a Nero, ALS specialist, or some other type of specialist?

My wife and I are getting very worried, should we be? Thanks-You for taking the time to respond!

CB in Ohio
 

CB1977

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One more thing- I went to the emergency room about 2 weeks ago because I thought maybe this stuff was being caused by a strike or bleed in my brain. That is when they did a CT on my brain and said they dont see anything unusual.
 

BethU

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QUOTE=CB1977;52844]Does this sound like ALS and the way it progresses? Does this sound like Bulbar Onset? If you have experience with this disease, please give my some input. CB in Ohio[/QUOTE]

Hi, CB ... I have had bulbar onset for 2 1/2 years now, and my experience is nothing like that. Not even close. Mine started with slurred speech that I was not aware of until others pointed it out to me. I WAS aware for many months after that that it was hard to talk ... I'd get out of breath speaking... but I didn't think anything about it until nine months later, when a doctor noticed some tongue fasciculations in a routine exam and referred me to a neuro.

It was about that same time that I started developing problems with swallowing, and was also referred to a speech therapist.

But ... as you will hear from many people, because it's true ... EVERY case of ALS is unique. There are some commonalities, but this is my experience.

2 1/2 years later, I have developed some gentle twitching and moderate weakness in my left arm, and weakness in my left leg, but my major problems remain bulbar. My speech is about kaput, swallowing problems come and go.

Hope this is of some help.
BethU (formerly from Youngstown ... and Columbus is one of my all-time favorite cities.)
 

CB1977

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Thanks-you for the response

Beth-

I am very sorry about your situation. I appreciate that you have taken the time to read and respond to my questions.:) As you probably know already, waiting for these tests and the resluts is enough to drive a sane person crazy and knowing anything (bad or good) at least makes me feel like I am making some progress.

It seems as though my issue is progressing very fast, week by week. From what I have read this does not seem typical of ALS? Have you heard of anything that my symtpoms do sound like? How did they actually make a diagnosed for you? One last question...what was your energy level like when you first started having your speech problems. I used to go to the gym 4 days a week and now (since late June) I am lucky to get through the day without a nap.

Thanks again so much! Go Buckeyes!

CB from Ohio

PS- why doesnt anyone else respond to my posts?
 

BethU

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Hi, CB ... Probably everyone else on the forum is out doing Labor Day stuff ... and our southern members are really busy right now with Gustov blasting away at them. I'm just hanging around the forum because I seem to have become addicted to it, and also don't feel like starting dinner.

My energy level has really been good until very recently (last two months). Now it comes and goes.

I've had 4 diagnoses, starting with stroke, then Progressive Supranuclear Palsy (nobody's heard of that, and very, very few people get it), then Myasthenia Gravis last January, then ALS this May. They reached the diagnosis of ALS by ruling out everything else that it could be. That means I've had lots of tests, with some repeated by different neurologists.

There are so many different neuro conditions with symptoms that may sound alike on paper (or on screen), that you really can't get much real information without seeing a neurologist. What's happening with you doesn't sound like ALS to me, but your visit with your neuro will give you some real answers.

And I'm sure some of our experts will show up on the forum by tomorrow. :)

Hang in there,
BethU
 

lydia

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Hello CB

Hello CB,

I linger on this particular part of the forum because it is what I need right now, not being diagnosed and in this limbo period. Personally, I feel as if I am in that stage where all I can do is take and take and take and that I don't have much to offer those in the same situation as me, except maybe a little commiseration. I have no advice, this is unchartered territory for me. But I do know that when I first joined, just the fact that people posted their concerns, anxieties, stories, etc. was what I needed, to read about others, that was what I needed at that time, and still do. I feel bad reading your posts and not responding so I just wanted to say I have been reading your posts and will continue to follow your story, but I don't know what to tell you other than you are not alone here and maybe when the holiday weekend is over you will hear more from others.

Lydia
 

laurel

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Hi CB,
I read your post too, but didn't respond because I don't have an answer not because I wasn't interested or concerned about what you wrote. I'm sure other will jump in after the long weekend. Best of luck.
Laurel
 

Zaphoon

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CB
If your GP thought something was seriously wrong, he/she should have referred you to a neurologist. I would feel some comfort in that, as long as you are confident with the skill level of your GP.

That said, I would suggest asking the GP for a referral or just make the appointment yourself. Seeing the neuro will probably get you on the path to having your questions answered and may also calm you a bit.

Best of luck!

Zaphoon
 

CB1977

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31 years old, could this be bulbar onset? Please respond....

Beth- Thanks again for responding. How soon did you get an EMG and was it initially abnormal? If not, when did it show up abnormal if ever? Is this something I should certainly get from the Nero? Thanks to everyone who responded!:-D
 

awieleba

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HI CB

I dont have alot to reassure you, not becasue I think you have MND but becasue there are alot of us that have these same issue's as you and can not get a diagnosed. (good and bad thing) but bulbar seems to start with slurring or nasal speach in alot of the profiles that I have read.

The twitching is the worse! I thought I had some type of arthritis/rheumatic thing going on (had alot aches) untill the twitching, then I ended up here. I was weak but I did not think alot of it untill those darn twitches and jerking muscle.

I would get ready for the long haul and prepared to not get any diagnosed, I am not trying to be a downer just realistic. Go and get the emg and necessary tests and live your life the best you can and try not to dwell on to much. I am trying this approach for myself.

my voice is hoarse also and I went to the ent and had a scope, he saw nothing of mnd that 'he' could tell.
had a biopsy, emg, you name it and yet here i am with no diagnosed and all these symptoms. I am happy and living my life, I still have fears but I try not absorb them.

I wish you the best of luck!

april
 

CB1977

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What about your energy?

April, thank you for your response and the advice! I have one more question, how was your energy level when your symptoms first started? Do you have a cough or trouble breathing? My energy dropped to about 40% of usual and that was my first symptom. I have developed a bad nagging cough. Thanks

CB from Ohio
 

BethU

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Beth- Thanks again for responding. How soon did you get an EMG and was it initially abnormal? If not, when did it show up abnormal if ever? Is this something I should certainly get from the Nero? Thanks to everyone who responded!:-D

Hi, CB ... this is my timeline.
Symptoms (slurred speech etc.) started March 2006. In December, 2006, a routine exam showed tongue fasics and I was referred to 1st neuro. He did an MRI (which was normal) and diagnosed me with stroke, as my speech was improving with therapy.

Then swallowing problems developed, so I saw a second neuro in summer 2007. This guy did a ton of blood tests, and a limited EMG (only on my left side, for some reason) in his office in October, 2007. He told me my EMG was "clean" and diagnosed me with Progressive Supranuclear Palsy.

But then I had respiratory problems and was hospitalized in Dec. 2007, and a consulting doctor there diagnosed me with Myasthenia Gravis. (Some of the symptoms of ALS and MG overlap, so this was not illogical ... just wrong!)

So I went to an MG clinic in May 2008, and they did a second EMG ... a MUCH more comprehensive one ... and found 3 areas of denervation. The neuros there diagnosed me with ALS. Interesting, that two of the areas where they found denervation, I had no symptoms whatsoever at that time.

I have not had much twitching, except as a side effect of some meds I took along the line, but I know that other PALS (patients with ALS) do have twitching, and in the last few months, I have developed it on my left arm and hand, which are showing weakness.

I would suggest your seeing a general neurologist first. There are so darn many things that mimic each other, I think your best bet would be to see someone who can take an overview of all your symptoms and history. They may be able to zero in on something else pretty quickly. You're going to have to rule out all these other things before they diagnosed ALS anyway, so let them be methodical and thorough.

I wouldn't ask for an EMG. If they feel that it's called for, they will suggest it. My only piece of advice is that if a neuro suggests it, have it done at a big clinic, if possible, where they have the most up-to-date equipment.

Good luck.
BethU (Go Red Birds! Do they still play in Columbus?)
 

awieleba

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HI,

I am a difficult person to guage the energy level. I was pregnant in hind sight when all this started. Then I got severe colon infection that landed me in the hosp. 2x and then chest infection 1x in hosp!
I did notice in the last part of pregnancy that it was like all of a sudden I was done, just too tired to do anything. THis can be common but I worked out through both my other pregnancy. I also started having a issue with my calf and i though it was just varicose vein from pregnancy. I was shorter of breath than what is normal for preg, i could not read books to my kids! OR yell at them for that matter. Then the baby came and then the infection....but my energy had not returned, it is down 40% or more.

Honestly, if it were not for the kids, I am not sure what I would get done. I HAVE to do it with them. They have to get around and go to school and have fun and sports. They get me going.

as of the last few months, I have shortness of breath that had never went away. They said it is the baby, then they said it is the recovery, then the infection. I now have none of that and I still have to take really deep concentrated breaths. I dont have a bad cough, just a horse voice that gets worse If I talk alot, wich I do! I saw an ent for it and he said I have lpr, a form of gerd...whatever! YOu should try a claritin. I noticed that my voice was worse after golfing and there is alot of cotten in the air, maybe.

On a side note my twitching in the begining was real bad and all over. It is now in my legs or in a muscle that is excerted. I have had minor ones in my tongue. I also have neck issues, but always have and found out through mri that I have buldging disks there. I have bad lower back pain, but I think that is more from stomach muscle.

My twitching was real bad at night and I had to take a sleeping pill. It made me so nervous.

I wish you the best with this and we are here for you....

april
 

CB1977

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April- have you been diagnosed with anything at this time or are you still searching? You case sounds stikingly similar to mine, right down to the colon infection (they told me it was prostititus) and it is now in my chest. I litterally woke up one morning and felt drained and have not recovered since. I am wondering if I have some type of virus that is attacking my CNS system...anyone heard of anything like that? I am guessing that if I go to Nero and my EMG and MRI and whatever else they do comes out OK, then maybe seeing an auto-immune specialist. I feel like I have mono, but I've been tested for that (and Lyme, HIV, and 15 other viruses...all neg results). My twitches seem to get worse when I close my eyes and begin to fall a sleep? I dont have atrophy or weakness in any particular limb but my whole body feels run down and weak.
 

CB1977

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Thanks BethU

Thanks Beth for the detailed reply! I appreciate it. I am not sure about the redbirds, I have been a C-bus resident for 10 years now and they have not played since I have been here.

In your reply you said not to ask for an EMG? Why is that? I just seem to notice that many people on this site were not taken seriously enough until they developed bad symptoms and were put through the ringer.

I got my MRI back on my neck, it showed no MS. That is good news. I also got back a test for Lyme, it showed negative.
 
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