Been almost a year now ...

[nserafini]

Hi,

Let me start of by saying hello. My name is Nick and i'm 28. And my adventure with my own body started about this time last year.

I quit smoking and started going to the gym. Good idea, right ? Well , one day i push too hard and hurt my neck / shoulder.

One night had a really bad headache and jaw pain with some chest pain to boot. Went to ER, all was ok ( they kept me overnight to be safe ) ... 2 weeks later same thing ... I also start to notice what feels like pins and needles in my hands and legs. Weird thing is it moves from one leg to the other, then up to the arm, then the hand ... Weird, huh ...

Regular doc does a EKG and treadmill test, all is good. Puts me on Lipitor. But he says, go see a local neuro and he'll check you over. They do a c-spine and all is clear. Around this time I start to feel a little weak and tired. Also notice that sometimes my hands feel a little puffy ( hard to hold a pen ). Again, this is all really rare and random, but i'm starting to get scared. Some liver test is a smidge high, so interesting.

Doc does an EMG and all is good. I still feel tired all the time and a little weak. Wait a few months and I go for a head MRI to cover MS. All good, no MS ( head is clear , and i can even prove to my wife I have a brain ! ) Maybe carpel tunnel, who knows...

Now I'm really worried. If it's not MS , then what is it! So I call an MS clinic in Jersey and see them, in 30 minutes the doc says NO MS ( though he was leaving for vacation that afternoon, and while a nice guy, wonder if he ever gave me the time of day ..... )

So for 7 months i had nominal symptoms like the puffy feeling hand, some days a headache, some days my jaw and skull hurt. But it always went away.

So ok, then one day I start to notice a twitch. I can feel the muscle firing off, much like the EMG test, where it fires off a few times then stops. I for sure don't have a cramp or the muscle stays locked or anything, just a quick 5-10 second firing of the muscle then it stops. Sometimes arms, sometimes legs, but never all over at once. Told the neuro I'm getting really scared and depressed, he puts me on Lexapro. 2 weeks into it i feel really sick. I stop taking both the Lipitor and Lexapro. Regular doc is ok with me off the Lipitor, but the neuro wants me to take the Lexapro. I keep telling him it's not stress or anything like that ( i mean i have a gf and 2 kids, i have stress, but not enough for all this )

And here's were I get worried. I go back to the doc and say I still feel weak and tired, some twitches and my hand(s) feel funny. Like my grip strength is ok, but the act of grabbing sometimes gets me ( it's no the hand squeeze, but the action of using my fingers to get it ) I get a blood test and whatever a smooth muscle test is, it is a little high, normal he says is 7, i'm a 9.

Now I'm beginning to notice my left hand , while seeming strong, feels sore and weak, and the same in the left arm muscle ( i can lift something heavy, but it will hurt later )

I have a local neuro visit next week, as well as called an ALS certified center in NJ and have an appt. there for another review.

Honestly, I think i have something autoimmune, but I can't tell cause am I weak from the fatigue, or is something happening to the muscles. I plan to be pretty firm with the neuro next monday as I think another EMG is needed to see if the muscles are going south.

What is killing me is the constant testing i do to myself, making me crazy and constantly thinking I have something bad. I know it's not fair to sit and moan here, but as most of you know, the lack of most doc's ability to explain or help us understand ourselves can be quite fustrating. I'm scared, I have 2 kids, a great job, and love life. I hate the weekends mostly because all I do now is think about where my life is going.

Thanks for listening... I can't vent to any of my family as they say it's all in my head and i'm fine.

Nick

[vmd]

Nick:


I'm sorry you are experiencing all these difficulties. You are doing the right thing by checking with a neuro. Don't concentrate on ALS, because your symptoms could be many different conditions or no condition at all.

[jimercat]

Nick,

Have you seen a Rheumatologist, as the pain and weakness/fatigue sort of sounds like Fibromyalgia, especially with jaw pain and headache. I'm not a doc, just know about Fibro because I have it. It involves the connective tissues.

Common signs and symptoms of fibromyalgia include:

Widespread Pain Morning Stiffness Fatigue Vision Problems
Nausea Sleep Disorders Urinary and Pelvic Problems Weight Gain
Dizziness Chronic Headaches Cold Symptoms
Temperomandibular Joint
Dysfunction Syndrome Multiple Chemical
Sensitivity Syndromes "Fibrofog": Cognitive
or Memory Impairment
Skin Complaints Chest Symptoms Anxiety
Depression Dysmenorrhea Aggravating Factors
Myofascial Pain
Syndrome Muscle Twitches
and Weakness Memory Loss:
Is it Real?
Weather Changes The Menstrual Cycle Troubles Breathing?

http://www.fibromyalgia-symptoms.org

[Jeliota]

The ending is the part I want you to read the most, but let's start with the symptoms:

I'm not a doctor but a hypochondriac who has researched this fully (and has many of the symptoms that you describe and stay in a Holiday Inn Express whenever possible).

Pain: Not a part of initial ALS. You should have been experiencing severe and extended weakness (as in not being able to lift your foot or open a bottle of ketchup) long before the pain arrives. From what I understand, there is some pain in ALS, but it is toward the end of the disease.

Twitches: ALS twitches do not stop and do not migrate around the body. If you have frequent twitches here and there, you're not having ALS twitches. I have frequent twitches here and there, and apparently this is normal (when it's not being caused by stress).

Weakness, tingling and numbness: Believe it or not, these can all be a symptom of thinking you have ALS. You may have very little stress in the rest of your life, but thinking you have a fatal disease is pretty stressful. Pins and needles (not an ALS symptom) and numbness, for instance, can often be associated with very slight hyperventilation, which can happen when you're wondering whether you're dying or not.

LISTEN TO THIS VERY CAREFULLY: You wrote: "What is killing me is the constant testing i do to myself, making me crazy and constantly thinking I have something bad. I know it's not fair to sit and moan here, but as most of you know, the lack of most doc's ability to explain or help us understand ourselves can be quite fustrating. I'm scared, I have 2 kids, a great job, and love life. I hate the weekends mostly because all I do now is think about where my life is going."

NOW THE IMPORTANT PART: I know you say that you don't have stress, but it is very clear from your post that you do have a great deal of stress related to your fear for your own health. Lexapro is a very nice drug, but it is not sufficient for what you are going through right now. Tell your doctor how worried you are. Tell him that even with the Lexapro that this is dominating your thought process. Ask for just a few days, maybe a couple of weeks, of Xanax (which can be taken with Lexapro). You won't get addicted over that amount of time, and it will help you to see your symptoms MUCH more clearly. The pins and needles will likely go away almost instantly. You might get a little more fatigued for a few days (because you won't be worried anymore and you're probably needing better rest)

[Jamiet]

Check for lyme disease, esp. with the swelling. YOu have classic lyme symptoms, including the coming and going.

You need to do an ELISA, Western Blot and PCR DNA at IGENEX labs.

do yourself a favor, go to lymenet or a lyme disease site, look up the symptoms, there are like 75, see how many you match. If it's 50 or more....well....i would look further. Also, many doctors have no clue about lyme and brush it off as something else. The do the first test (ELISA) which is very unreliable and stop there.

rgds

jamie

[jimercat]

Yes that is a good idea Jamie. I forgot about that. when I was first dxd with Fibro they checked for Lyme, as it also has similar symptoms.

It's really horrible when there are so many different diseases that have similar symptoms and you have to go thru so much to figure out what the crap is wrong with you.

Good luck Nick

[patricia1]

I agree the pins and needles are anxiety from hypoventilating very common,saw it in my office as a nurse what you are experiencing is anxiety and panic attacks Go on a medication Lexapro doesnt work for three weeks give it a chance there are other meds out there if you dont like lexapro. See a neuro by all means But I dont think its ALs Pat

[nserafini]

Thanks everyone for the feedback....

As an example of today, I woke up this morning feeling weak in the left arm and hand with some pain in the left arm muscle. Some in the right as well, but most in the left arm. I can also feel some pain in the forearm up the arm itself. Weird.

Take a shower, and head off to the train. Place my hand on the seat in front of me for like 15 minutes, and notice that the pain is gone, but my hand still feels detached ( like I can move all my fingers and wiggle them but it feels like i have a glove on ) all the while the other hand feels kinda the same. It's always the pinkie finger that feels the most out of place. Oh, and I always seem to feel nausea in the mornings, like I want to throw up but just seem to burp alot. That's always fun. It goes away when I get to the office and sit down to work.

I notice I'm flush ( red and feel warm in the face ) with no temp at anytime of the day. It just comes and goes. I have never noticed any spasm or locking up of my limbs when they twitch; just a few fire off's and then done.

I think in reality I do possibly have Fibromyalgia. At my next neuro visit I plan to ask if we can do the EMG again to test if I have any loss of muscle, but I still think that since I can still left pretty heavy things ( i was a fool and lifted a 150 lb TV for my wife the other day ) i'm not really seeing the muscle waste.

Also, I always described myself as feeling like I was on the tail end of having a bad cold with the soreness, weakness and general malaise.

As for the Lexapro, I've never really been sick or needed any meds before now. I mean sure I'm scared and all, but I think after my neuro put me on Nortriptlyne and i went back 2 weeks later seeing pink elephants, I'm a little hazy on stuff.

And the best part is i'm adopted. So now I'm trying to find out about my real parents medical history ...

When it rains ....

[patricia1]

Have you had a MRI of your neck It can be a pinched nerve as well Which can effect your arms and hands Pat

[jimercat]

I think in reality I do possibly have Fibromyalgia. At my next neuro visit I plan to ask if we can do the EMG again to test if I have any loss of muscle,

It is important that you see a Rheumotologist that specializes in Fibromyalgia if that is what you are leaning towards. Just as many neuros are not up to snuff on ALS the same is for rheumos and Fibro.

[ltr]

nserfani - I absolutely love how you write!! I am really sorry for what you are experiencing, but you are still able to add a little humor to it and give us a laugh.

My take on fibromyalgia (something I was diagnosed with in the beginning) is that it is a group of symptoms that the docs don't understand a reason for so they are labeled as "fibromyalgia". Many docs, including my primary care, do not believe in this syndrome. And now that I have been diagnosed, I definitely know it is a crock!!! Yes, those patient's are suffering all of those symptoms, but for a reason unknown to the doc, hence the diagnosis of fibromyalgia. They even added chronic fatigue to mine when all the symptoms didn't fit fibromyalgia. Chronic fatigue is another "we don't know what it is, so we will label it this" syndrome.

Are you still on Lipitor? I think that all the cholesterol lowering agents can cause muscle problems. Try googling it for side effects, but not on the lipitor site!

Hopefully your symptoms will abate, maybe viral or something, but if not get a good neuro. I too had extremely bad flu like symptoms and exhaustion and no one could figure it out. I know it makes for a rough time, but hang in there. Good luck~Leslie

[nserafini]

In reality, that's my take on Fibro as well. It seems like a doc would have an easier time just dumpng all these symptoms into one well rounded, named disease and that's it.

I 86'd the lipitor a while back. I was told that the Lipitor could in fact make people feel this way, with the fatigue and the soreness.

I apologize in advance for this, but in reality I've been freaking out for a while now. Almost feels like I'm screaming on the inside, but trying to hold it togeother on the outside. Anyone in my family I try to talk to always says it's stress or that it's nothing to worry about. That's a hard pill to swallow over and over ....

I mean it's scary as heck that my fingers still work just fine, but feel somewhat disconnected. Like my grip is a smidge off, but I don't know anymore.I have no problems with buttons or bottles, and my grip is all kosher. But, I really feel this is just the beginning on a downward slope.

[Jamiet]

I know exactly what you are speaking of on the family issue and screaming inside. The worst part, is every time the docs say it's fybro or cfs or something of BS nature that they can't figure out..your family, including the spouses in my situation....look at you and say "you see...nothing is wrong with you", then they act like "POOF" and your healed. Then, you can't get outta bed the next morning....and they are after you to get outta bed, and wonder why you aren't all peppy....

it's a double edged sword. Most people who suffer as we do, don't understand. They can't relate...no offense to them, it's just...you don't know until you walk in our shoes...you just can't imagine what it feels like, it's unimaginable.

Sorry jimercat...you are so helpful, this is in no way offense to you wonderful CALS.....YOu are gods gift to us, but....as my psych says....he's a recovering alcholic and he always tells me he konws exactly what i'm saying because he knows first hand, that only another alcholoic feels like he does and can understand. Jimercat, be honest with us, did you ever do / think that to your spouse.....what did you feel when this all started, is it because you didn't want to think something was wrong with your hubby??? Help us understand why no one understands us?

Good day to all.

[jimercat]

All right this just chaps my a@#!

I had a really long winded to reply and the dang connection timed out.

First of all, I'm really sorry y'all are having to go thru this, not knowing what is wrong.

My husband has always been the rugged type and has always hated going to the doc. But he's always been clumsy and IMO this is cuz he's left handed and has ADHD ( and yes I believe in adhd since he would loose his head if it wasn't attached). He has continuously hurt himself (before ALS) doing things around the house (like falling out of tree with chain saw buzzing), but he aways came thru OK. then the breaking of feet/6 mos later breaking leg - I thought WOW he must be getting old and shouldn't do such risky things anymore. But then the swallowing episode really scared me, but I didn't know what to think. Another 9mos go by without any earth shattering event, then he shows me the fasciculations on his haand and forearm. Coming from a "medical" family, I knew something was seriously wrong, more than a pinched nerve. I begged him to go right away to the GP cuz I looked up what had been happening to him and came to conclusion is was ALS. Sure enuf GP and 4 neuros later all say ALS. Wish to God it wasn't so.

As to what others reactions have been...let me tell you many people have pissed me off. And surprisingly most of them are family members on my husband's side! Two of his brothers actually said "he looks all right to me," "ain't nuthin wrong with him." His father told his sister not to call the other family members after I had asked her to because a lady in his church had had ALS for 18 years til she kicked off so it's not that serious. Well ain't that nice??? Was she bedridden and on a vent for 15????????? So let me tell you even after you get a for sure dx you will still have the a-holes to deal with. People look at my husband and think he looks just fine - maybe skinny arms - maybe sounds like he's drunk - but he's fine and dandy.

To answer your question - I never doubted there was anything wrong with my husband. And I think other people are very ignorant and don't want anything in their world to change because of their own insecurities. So they want to block out any unpleasantness. It's not happening to them so why get your knickers in a twist???

One more thing (sorry I'm all over the place with this answer) be prepared for friends to alienate you once they've rallied round they may be gone afterwards never to be heard from again. I could go on but I don't want this post to get lost aagain.

[Jamiet]

Oh jimercat...the same happens to me, but it's usually once the Ambien is good and kicking....lol.... i'st like i will accidently highligh the entire post and next letter typed....POOF......it's all gone....

I love your answers, you are a special person. I hope, your husband know's how lucky he is. I was wrong, you do understand, but, you also see, you are in a very small crowd of people who "understand"

I'm also "high paced" and often climb walls if i'm in the house more than an hour and yes....i would forget my rear if it wasn't attached. I continuously used to snap my fingers..since all of this, it's slowed me down. We are similiar.

Yes, you've got me laughing on the chain saw incident.....i can just picture that. I'm sure it was funny at the time, but, now, we know the reality of it.

Isn't it amazing how people judge others, then, throw up a curtain say nothing is wrong with you..get up...quit whining.

We all go thru the same thing, it's amazing how people think. Alot of them, live in their own pathetic little corrupted world, just as long as they make money, they don't worry about nothing else.

Yes, friends have already alienaited me, some of them and some come out of nowhere to help. I haven't found they alienate you, they just don't come around.

Take care,

jamie

[patricia1]

My family reacted the same way Mom they would say You a lazy talker thats why you slur You look fine you work and go to the gym YOUR FINE They were in denial becaue of the love they have for me. Forgive his family They will have plenty of time to cry. Pat

[jimercat]

Hey Pat,

I may sound harsh on this board, but don't worry I am a forgiving soul. And I'm sure that his family (most of them) will come around when things start getting bad. Thanks for the encouragement.

[Jamiet]

It's ashame...you have to get to where you can't walk and talk, before anybody starts realizing....hey...something is wrong with this cat...

[ltr]

Jamie - don't think that will change when you get your diagnosis. They still pull the "well I'm not sure why your having that symptom, must be stress" WHEN I AM READING THE SYMPTOM IN THE BOOK SHE GAVE ME!!!!! My doc tells me that most people with myopathy are hardly walking or doing the things I am doing and I am a mild case and that really bothered me. I know many, many people are worse off than me, but if she even knew for a day how badly I suffer......between pain, weakness and fear, she wouldn't treat me as if I didn't matter because I walked into her office instead of crawled. I am still really scared, I have atrophy of my skull (ever heard of that one??), the bones stick out and hurt all over it. The only thing I can do is take Prednisone and hope it works. They aren't even interested in why I have myopathy, which may happen to others on this forum as well. It's just a never ending battle. Leslie

[patricia1]

I went to a party ,and family and friends were all very surprised how I looked I dont know what they expected ,and when you dont look sick they think you are making it up. They have to see me undressed to see my skin hanging where my muscles were.People are visual If you look OK they think your Ok I love when they say how are you. How do you think I am , I am Dying thats how I am,Or you look great today. How did you sleep last night.I know they mean well.How about what did the doctor say. Is there anything you could do. Or maybe itss something your allergic too Do you get worse with some foods.Or maybe its not ALS maybe its a mistake PLEASE! I know they dont mean anything by it. I am just soooo pissed off I think thats why I m still here I just wont give in to this disease Pat

[jimercat]

annmarie and pat,

That exact same thing happened when a friend of ours came by the house. and why did she come by you ask. because she was getting married for the 3RD TIME and wanted us to meet the kind gentleman. And upon her exit she confided to me about my husband "Well, he doesn't look as bad as I thought he would."

Sometimes it's all about me me me. And my husband said that after she left. she didn't come to check on him, but to show off her latest trophy.

sorry it is late. don't mean to be so bitter.

[CindyM]

It is ok to vent, Jimmercat. I think it is the same with any illness. My Mom's Alzheimer's was at the point where she couldn't remember she had kids, but those very same children would make their yearly visit (from the next town over, I might add,) and take a look at her and forget she is ill. They would try to talk to her as if she was abe to understand things. I used to want to say, "You give her a toothbrush and she starts cleaning the floor with it, but you think she will rememer that you like the beach?" It is nuts! Cindy

[ltr]

Here's a good one to add to the friends stories. The other day a couple of friends, whom I haven't heard from throughout my illness ordeal, called and asked if I wanted to go on an outing that many others were invited to. I decided to go and the kids and I packed up swimsuits and food. We were having a really good time, but while trying to play whiffle ball, I just couldn't manage the exertion, so I became the full time pitcher, just tossing the ball. My very good friend told me that he could tone my failing muscles back up if I just wanted to put a little work into and show up every thursday for a rugged workout! The whole time he was saying this he was looking at my body, as if I was lazy and that's why I looked mushy. Then he threw in that there was nothing to me. They just don't/won't get it. Leslie

[jimercat]

Leslie,

At least you tried! It's bad enough that strangers don't understand, but when family and friends turn a blind eye, it's really frustrating and hurtful.

You know the last thing I think any of us wants is sympathy, but a little compassion would go a loooooong way!

[Jamiet]

YOu said it...i don't need anybody to feel "sorry" for me... I'm a big boy and put my pants on one leg at a time, just like ever other human out there.

What i would like...is yes, some compassion and understanding. That's the right word. Thank you annmarie.

take care yall


rgds,

Jamie