Really Scared Now

[JAndrew]

I posted a few days ago for the first time and have had other symptoms surface since then and I am having a high level of fear/anxiety now and having trouble sleeping because of it.

I am 33 years old and I have three boys (ages 12, 10, and 2) with one more on the way due in January. As I said in my initial post I am experiencing some mild muscle weakness in my apendages coupled with fatigue that fluctuates from mild to moderate. I just recently noticed some stiffness in my hands (worse in my left hand than in my right), which worsens with cold. I dont have any cramping, but my face is starting to tingle around the nose/mouth area. I also feel occaisional tingling in my hands and feet. Im not sure if the tingling is genuine or psychosematic onset related to anxiety, but I am really scared now. I have had some twitching, but not an unusual amount.

I am an air traffic controller and my wife no longer works because I do well for us and she is able to stay at home with the kids. She never bothered finishing her degree and if I come down with als I am worried that she wont be able to complete her education before I lose my medical status and my job. We would lose everything.

I have been experiencing the symptoms above for less than two weeks now, and I wonder if anyone can tell me how quickly and aggressively als can manifest itself. I have a doctor appointment in 6 hours to discuss the results of a ton of bloodwork he ordered, but I dont feel I will find any answers there. I know Hypothyroidism can account for some of my symptoms, but I dont know what could possibly account for the stiffness in my hands.

I know I'm rambling and I apologize, but does anyone here know someone that als has affected rapidly and aggressively? Can you go from asymptomatic to feeling terrible in just 2 weeks? Has anyone below the age of 40 ever experienced such a rapid onset of ALS?

 

[brooksea]

JAndrew,

Very sorry you are having such problems. ALS can be rapid or slow and no one seems to have an explanation as to why. That being said, usually a person has had ALS for quite some time before rapid deterioration and will realize that in hind sight. For example, in my husband's case, tripping, falling and being extremely clumsy came several years ago, then swallowing problem a year later. Then twitching about 6 months later in 2006. Now atrophy. So we believe he developed ALS several years ago and we didn't know it at the time.

I really hope that you find the solution to your problems and that it can be chalked up to a very stressful job. Please let us know the outcome of your blood work. Will be thinking about you.

 

[Icanmanz]

CJ, I agree with you that sometimes a person has had als for quite some time, and not know about it. You see I knew "zero" about this disease when my son was diagnosed'ed on 3-29-07. He started complaining about a few issues before then. I would urge him to go see a medic, but you know how some of these men are, especially when they are young. Even if my son had gone right away, als is als, and there is no cure for the damn disease, right? Don't get me wrong my son was alarmed, but he was afraid of the outcome, and "Horrific" it was! For my son to pass 15 months after diagnosed, that was too damn quick. I remember I used to beg him to go see a doctor, because he was coughing a whole lot. He coughed, coughed, and coughed for months. After the diagnosed, they got him on Rilutek and other meds, and the coughing somehow eased. What's with the coughing? I have read so much about this monstrous disease, and I have always known that it affects some differently. By the way cj, how long altogether has your husband had als? Can he still speak, and get around? I have read so many of your posts that my head is going in circles! L(OL God bless you and hubby, cj!

Irma

 

[Al]

While ALS may come on rapidly it is usually a few months not a few weeks. I'd be leaning more to a virus or something of that nature. And some of us do know how stressful an ATC job can be which can bring on a whole raft of symptoms. Wait for some tests before you panic.
AL.

 

[brooksea]

Hubby is OK for now. Probably had ALS for 2-3 years. Can still talk and eat, but can't understand him a lot of the time, especially when he's tired. He has to be very careful when swallowing. Coughing and gagging is getting terrible. He is weak and muscles have atrophied severely in arms and upper body. Left thumb is paralyzed. But hey, he is still walking and running his mouth! LOL He just raised some money for MDA Walk of Hope in Atlanta for the walk tomorrow at the zoo. He's in San Diego now with his sister, getting in one more trip before he's not able to. Thanks for asking Irma!


Jandrew,

What were the results of your tests?

 

[JAndrew]

My heart really goes out to you CJ and your family. My family doc is a PA and all of my blood work came back normal, except for an Epstein Barr test, which to my understanding is a very common virus, but my doc said that the virus is active in me, which can create the fatigue/muscle weakness (hello run-on sentence). He said the tingling in my face/mouth area can be attributed to anxiety and he suggested that my other symptoms were psychosematic. He also gave me a physical exam and said that I was grossly nuerologically intact. I still asked him for a referal to a nuerologist and I have an appointment Wednesday morning. I even asked my family doc to tell me what he knew about ALS and common manifestations, but he refused as he thought I would convince myself that I had a whole new array of symptoms. So, Im supposed to see the nuero and have some tests done there, but my doc wants me to come back when I have explored this path for some treatment with anti-anxiety medications. I have had this discussion with him before about depression/stress/anxiety when I was feeling generally run-down about 2 years ago. So, if that is the case and this is all in my head, then I feel terribly for wasting the time of the good people here that deal with this horrid disease. Please forgive me, I'm just scared right now.

 

[JAndrew]

Thanks for taking time to respond to my post, Al. I appreciate your words.

 

[Peg B]

Hi JAndrew,

My symtoms started almost 5 years before my first DX. But everyone is different. If you have not already done so it would be a good time to have lots of insurance and investments with disability clauses. At the suggestion of my broker many years ago I put a disability rider on an insurance policy and now I have a 100,000 dollar policy where the premium is waived. This will help put your mind at rest about your family. I am the bread winner for my family and I know having some of that in place makes things much better. I hope you have nothing serious and wish you the best. Sincerely, Peg

 

[JAndrew]

I have a constant mild cramp in my left foot now....it is constant and both forearms and shin muscles are weak and fatigued...I have no idea what this is, but it is scaring me still.

 

[brooksea]

JAndrew,

You seem reasonably intelligent :wink: and not on the verge of hysteria, so don't feel bad about trying to find out what is wrong with your body! I know it is extremely frustrating waiting on a diagnosed when you have yourself researched the symptoms and believe it is ALS.

Your GP was wise to not discuss ALS with you, but as we all know, (much to the consternation of many docs) there is the internet! Usually most (not all) GPs and regular neuros don't know enough about ALS to diagnosed. If you could get to an ALS Clinic, it would save you a lot of sleepless nights of worry going from one doc to another and one test to another. They can do it all at the Clinic.

And to add to what Peg said - if you aren't well covered for catastrophe, get prepared now before a diagnosed. My husband was looking into a private disability policy right before his troubles began and then it was to late...not trying to be negative, just realistic.

Here's hoping Wednesday brings good news that you have something treatable!:-D:smile:

 

[JAndrew]

I go to my Neurology appointment in a few hours. I'm not sure if my symptoms are progressing, but my limbs no longer feel heavy and my fatigue has abated. Now both of my hands feel very stiff from the wrist down and my forearms tire quickly when performing tasks like using a screwdriver. My feet are hurting me along my arches and I am getting an occaisional twitch in my hands along with tingling. The neuro I'm seeing was reccommended by my GP and I hope he has all of the test equipment for EMG and NCV. If not I wont be able to sleep until I get everything looked at.

Wish me luck

 

[Icanmanz]

Thanks for replying, and God bless you and hubby, CJ!

Irma

 

[Icanmanz]

Good luck, and prayers your way, JAndrew!

Irma

 

[MtPockets]

JAndrew,

I hope you got a good report from the Neurologist.

To give you another point of view of the progression of ALS, I had spasms, muscle jumping, fasciculations, just to let you know, many people describe it by different names.

Mine started in my feet, after about 3 months moved to my calf muscles; just the "jumping muscles", now I'm talking about, no weakness, no tingling, etc. Just muscles moving on their own.

Then after about 6 months I began to have the "muscle jumping" all over both legs, and then the cramping (Charlie Horses) started. Where the muscle would cramp so bad someone had to rub it or move my leg to get any relief from the cramp.

A lot of people lump all these under one word "fasciculations" ("A coarser form of muscular contraction than fibrillation, consisting of involuntary contractions or twitchings of groups of muscle fibers.")

To me they were all different and took place over a long period of time. I did not have any atrophy, weakness, until after about 9 months of these fasciculations.

My Ck in my blood went up to over 3000, at the peak of the spasms. This is one part of the blood test to consider.

All ALS patients have different rates of progression, different types of onset, so there is no cut and dried guide for you to look at and know if you have ALS.

Having said that, most of us have had a progression of symptoms as I have described above, not a sudden complete onset of them all at one time in a short time frame like 2 weeks.

There is another disease called BFS, it is benign fasciculation syndrome. You have fascia's, fatique...and thats it. Its benign but almost everyone who has had it is scared of ALS. There are many other things that have the symptoms you describe, so please do not jump on the ALS DX until you rule out the many other possibilities.

I hope this helps to ease your mind and have you look at other possible things that may be happening.

God Bless
Capt AL

 

[JAndrew]

Thank you so much Capt AL. The Neurologist told me the stiffness in my hands is most likely Carpal Tunnel and he said the pain I'm having in my feet (no cramping or twitching just pain running in a line along my arch) sounds like Plantar Faciitis. He told me to go see a Podiatrist and get some inserts for my shoes.

My muscles fatigue rapidly and the Neuro said that is indicitave of a different type of Neuro disorder. He ran some more bloodwork on me and I have an EMG scheduled for December 4. I was honest with him about my fears and anxiety concerning ALS and he told me to relax because of the many other problems or combinations of problems that are more likely explanations.

So, Im just trying to relax for now and put this out of my mind, though I would like to know what is wrong with me. Thank you all who have taken time to respond to me.