What are the odds of ALS?

[becjo]

Thanks for all the previous responses you have given me.  I am just on to the next step and scared.  Now, I've had all my MRI's come back clear, all my extensive blood work come up fine, and now my lumbar puncture results came back in:  protein looked good, fluid was clear and no sign of MS. That was good but now my neurologist doesnt know where to go from here.  She wants to do an EMG to test for myasthia gravis and ALS even though she's told me she does not think its MG because my muscles are weak as soon as I wake up and they dont worsen through the day.  My muscles are getting weaker every day - especially in my left leg and my left arm.  They tremble all the time too.  I tried to go back to my Jazzercise class and when lifting weights, my left arm was shaking so bad with a 1 lb weight - it was terrible! (I was using a 5 lbs weight no problem months ago)  So now, I'm afraid that ALS could be a possibility.  Do you think thats a common thing in a 30 year old woman?

Also - I do have an appointment with my OB/GYN to discuss depression since that's what we talked about before since this all started right after my miscarriage.  It blows me away to think though that depression can cause such neurological symptoms  like this.  I'm having such a hard time functioning anymore.  If it is depression, the way I feel sure doesn't help.

Thanks again for your help.  Have a nice Thanksgiving!

[tracer]

I just posted the prior story and my email address didn't come up right.  It is ***@**** if anyone wants to reply!

[tracer]

I too have been going through the entire MS/ALS ordeal. I also worry about the Lyme, a reaction to the flu shot, or just plain old anxiety!  Had a bout with the anxiety about eight years ago but nothing significant since. It is interesting that anxiety seems to be a common thread with a lot of these symptoms. I am having a similiar symptoms to what you described. It started in Nov 2001 when I was having joint pain in every joint but mainly my knees and ankles. This had been going on for five weeks so I finally decided to go to the doctor.  They decided to run some blood tests and I also got the flu shot that day.  I did not want the flu with two young kids to take care of. About four weeks later the joint pain went away and almost simultaneously I developed tingling in my right foot that quickly spread to both feet. The tingling is so strong I call it "vibrations" because it is much more pronounced than tingling. Since then it has started to migrate to different areas of my body like my hands, head, abdomen. It basically moves around the body at various times. About three weeks after this appeared I started getting these muscle twitches that move around as well. It feels like someone is poking me but is not. IT is much worse at night. I have had the joint pain come and go. Fatigue comes and goes. No muscle weakness however. I am no longer sleeping soundly and wake at least twice a night with a pounding heart. I began seeing a floater in my right eye. Keep in mind I have had very few health problems until now. I am thirty-two, female. I have also had nausea, swollen glands, pelvic pain, chest pain, mood swings ect that all come and go. Over the past two days I noticed the tingling diminishing but it was back in full force yesterday night. I have had countless blood work done. All normal except an ANA of 1:160 which was tested the same day I got the flu shot. Since then it has dropped to 1:80 which is borderline. I have been to a neuro who did an MRI of the brain and spine and an EMG - ALL NORMAL. My neuro mentioned he thought the flu shot could have done this and has given me three months to see if the symptoms go away. I pray they do. I have been tested for lyme (some people have it in my neighborhood) but both the ELISA and western blot came back negative. I do not know what to think because I am very aware of the controversy of the test results. Not everyone tests positive and can still have it. It is best to find a lyme doctor who will test from the IGENIX lyme lab in CA. None in my area do so I am considering going to NY to have the proper tests done. Do not rely on local lab results. Has anyone had these symptoms and made a full recovery from them? Does anyone know what this could be? I am leaning toward the flu shot or lyme. MS had been ruled out and my neuro didn't think it was lupus but isn't a rhematologist more qualified to diagnosis lupus? I have had the flu shot for the past five years and will never get it again in the event this is the culprit. I can only hope my body can recover. It is hard to stay calm when you do not understand or know what it happening to you! My email is ***@**** if anyone wants to comment there.  Thanks for listening!







  

[perky]

i'm sorry becjo.  i hope you have heard on something. i to have been going through it.  it started this past summer where i my legs ached for no reason i kept putting it off because i hate going to doctors. know my legs ache really bad, i am dropping things, the fatigue is awful. i am now on a levae of absence at work. they did a brain mri but healthsource would not let them do the neck or back. all my blood work came back ok except they said my b12 was a low normal. so know i take 1000mcq daily. my evoked potential is normal. but i still feel bad. now they are going to do the mri of back and spine if the insurace allows it. i am scared to i am not depredded and always been so active i am so fustrated. good luck to you and lets hope it's something simple. chin up

[MPC]

Hi everyone,

You folks are correct...searching the web for ALS information is the surest way to lose your mind! I'm so glad to find this board.

I am trying to figure out how to post a question, but wanted to comment on a couple of things here and tell y'all my story so we can compare notes.

If the EMG is normal, and you don't have any weakness, please, please stop worrying about ALS. You won't have a normal EMG and no weakness if you have ALS! (Print this out and re-read it if you need to <grin>).  

Anyway, I have some of the same symptoms you folks do: light vibrating/shaking (can't usually see it but I sure can feel it) all over my bod, mainly arms, legs, neck, buttocks, hips, abdomen, back, sometimes face and scalp. I also have some twitching (lesser). Recently my hand has begun to tremor when I use my track ball...d'oh.

The vibrating/shaking is nonstop, but I notice it more later in the evening and during the night/morning. It's worsened this month so it's almost academic when it's "worse"; it sucks in general.

I'm still able to do my activities, like most of y'all...but it's scary. I'm 33, female, athletic...

My history is as follows: It started March 2001 *very* lightly and has gotten worse. In the fall, I started shaking (like I was overexerting but I wasn't) when I exercised.  I've been very fit for most of my life so this is distressing.  

I've got some muscle weakness (proximally: hips/thighs and shoulders/arms), and my EMG back in November showed some myopathy on my upper leg (outer quad?) We tested left side only. Some of my other arm and leg muscles were "borderline" (my psoas <sp> for one) according to the neurologist. The muscle that was most messed up was recruiting too quickly.  The neurologist stopped giving me info when she saw I was almost in tears; she was upfront about the first muscle being myopathic, but then said the others could maybe be interpreted as "borderline"...

I don't have any pain.

They've ruled out: MS and brain tumor (via an MRI which came back "unremarkable"), lyme, thyroid, VD, B12, folate and a host of other things.   My blood test for inflammatory myopathies also came back negative. My nerve study (NCV?) was normal, which means that it's probably not a peripheral nerve problem.

My neuro originally thought it was a steroidal myopathy, but it didn't get better (continued same amount of deterioration) when I stopped the inhalor, and it's been since October (Flovent 110, 2 puffs a day).

My MG blood test came back negative; this is accurate for 80% of those with MG, so there's a good chance it's not that.  She (my neuro) very briefly mentioned it could be a motor neuron problem (i.e. ALS) last time.  

She has repeatedly asked me if I had the flu when the symptoms started, but to my knowledge, I didn't.  I get sick sometimes though, for a day or two, but don't pay any attention, so who knows. If I was sick with a flu like thing, it wasn't anything bad, because I don't remember! I wonder what is making her ask this.

Needless to say I'm pretty scared.  Anyone have similar problems?

Anyone know how they diagnose ALS?  I've heard it's EMG and muscle biopsy and ruling out other diseases.  Any other suggestions about what this might be.  She has also considered mitochondrial myopathies, but says there is usually pain with those.

MPC

[wemeacha]

Folks
I have just been diagnosed with ALS. I know for a fact it is a devestating thing to find out when you are still in your prime. I am 50 and thought I had a lot of life left.
My advice is to find a Neuro specialist that knows something about the disease fast. I started out with muscle cramps then muscle weakness in the shoulder region. it took about a year to finally get the news. I went from rhabdomyolosis to PM to MG to ALS. Also, don't read about it on the net. It will depress you and not help the situation at all.
GOOD LUCK!!!!

[janelle]

Jonny,
Would love to discuss your MDA speialist with you.  It sounds like your visit went better than mine! Email me at ***@****.  It is nice to know someone who can relate to what your going through, my family is very supportive, but they still don't know the magnatude of what we are really going thru!
Look forward to hearing from you!

[becjo]

I've been busy moving and haven't checked in lately, but I saw your comment and I could definately use a friend through all of this.  

I'm sorry you have experienced the saddness with infertility and miscarriages.  It really wipes you out, doesn't it.    Are your symptoms doing any better?  I went back to my OB/GYN who put me on Celexa for depression and it really seemed to help the first couple of weeks.  I was feeling great - no problems.  But the last few days, everything has come back in my arms and legs and the ALS thing is in my head again.  But I keep thinking if it went away for awhile, then it can't be ALS?  (Fingers crossed)  

Just checking and seeing how you're doing.  If you ever need to talk, my email address is ***@****
Rebecca

[twitch_city]

Wow Jannelle!

I thought I was the only one going through this.  I am now on my fifth opinion.  Two Emg and Eeg along with many Mri's and catscans.  Not to mention a few spinal taps and tons of blood test.  If you want I would love to discuss my MDA specialist vistit with you.

                                     Jonnyh

[janelle]

It is amazing how many people have the same symptoms and Dr. cannot figure it out.  I have even had 2 DR. tell me maybe it is a new disease not yet discovered.  I have been having muscle twitches, weakness, atrophy, trouble swollowing, etc. and have been to 4 neurologists, had 3 MRI's, 2 emg's, muscle biopsy, spinal tap, blood work like crazy, and was first told :"nothing was wrong", then it was myastenia gravis, then I went to the Mayo clinic and they told me I had a Mitochondria disorder, and sent me to MDA where they had a specialist, and the specialist told me it was not a mitochondria disorder, so I asked  the "specialist" why I was having so much atrophy and he told me "I must be somehow causing the atrophy myself." ( though he could not explain to me how he thought I was causing atoprhy to just my right leg and right hip, and not the leftones) What an idiot.  
It has been one frustration after another, and still no diagnosis and getting weaker every day.  I have 2 children 3 and 13 and was fine unitl 6 mos after my 3 year old was born.  
Scared to death of ALS since the symptoms are so close.  
I have now sceduled an appt. at Cleveland Clinic for a 5th opinion in late January and am praying it is not als.
It is nice to have this to   express with others who are going thru the same, Anyone who would like to chat, let me know!

[RR69]

I want you to know, I'm going through the exact same thing!! I'm 32 years old. My husband and I were dealing with the highest level of infertility treatments which involved taking up to 13 different medications a day, three of which were injectable and one of which was toxic to the skin. We conceived twins at the end of october, and after 1 month of pregnancy, I miscarried twins (about three weeks ago). When I was on the medications I occasionally felt twinges down my left arm, like air bubbles or something, and my hand would react and I would think nothing of it-chalked it up all the meds, especially the asprin. Now, since the miscarriage (which was extremely traumatic) I've been a physical mess. I have twitches all through my body, especially in the evening. They also seem to be more prevalent on the left side of my body. I'm also under tremendous stress at work. I'm usually hypothyroid, but when I was pregnant they raised my dosage and as of two weeks ago I was hyperthyroid. Now I'm back to my original dosage. Well, at the end of my visit with my physician, after telling him about my twitches, arm and occasional difficulty swallowing, (which I've had for well over a year) oh, and my reflexes were a bit high,he said, I'm 99% certain its the stress and the thyroid, but it could also be ALS. I sank. He said the chance was very very remote, but he had to be honest and mention it. He ordered bloodwork, but I have yet to get the results. I'm scheduled to see a neurologist on Jan. 10th. Can you believe it? That's the soonest he would get me in. Now I've been searching the web. I have major anxiety. I seem to be getting more symptoms, but now I'm wondering if they're real or psychosomatic. I'm in an anxiety/terror tailspin. He put me on buspirone. It helps a bit, but nothing will remove my fear until I see a neuro. I'm trying to get in sooner. I'm testing my body constantly. Are these muscles the same size? Is my shoulder weak? I put myself through coordination tests. I super focus on how I'm speaking, afraid of possibly slurring a word. I'm making my husband nuts. Maybe we can help eachother through this. Keep in touch.

[Jeffro72]

Sorry, was hoping the comment option was private.

Jeff

[Jeffro72]

Hey jonny,

Be sure to email me if you would.  ***@****

Its always better to have someone to ride with when it comes to scary things like this.  My GF, friends and family are all supportive, but they can't relate as well as someone who has similar symptoms.

I've practically scoured the web for 2 months solid on ALS and MS and know way more than I ever wanted to know about these diseases.  

Jeffro

[twitch_city]

I know how you feel!  The not knowing is driving me crazy!  I have been to three neorologist.  One was a fantastic man who did the emg,eeg and bloods for all.  I have great respect for him because he told me ALS is out of his league to diagnos.  The only way to relieve your mind is to find out once and for all it is not ALS>   That will be done by going to a center where they see it all the time.  I am on my way to one of those centers soon.  Hope you all do not have it.

[Jeffro72]

I too have these fears of ALS.  

I am a 29 year old male, who started having symptoms in August 2001, starting with a strange muscle weakness/numbness in rt shoulder.  This quickly spread to my rt arm shortly after.  A few days later I felt it on the rt side of my face.  Within a few weeks it spread to my left calf and hamstring (though got slightly better on my arm/face).  Also noticed problems with coordination in hands.

The scary part of this are the fasciculations. They are everywhere, but mainly in my feet and calves, but also occasionally in my face, arms, and trunk.  They are worse at night and in the mornings, but do last all day long.  The affected areas aren't much weaker than normal, but it is still noticeable.  Feels sluggish, like the muscles don't want to move.

Currently the docs are baffled as to what is going on (they are still not done with me), as all tests have come back pretty much normal (CT Scan, MRI, EMG, reflexes, bloodwork, HIV, Lyme, diabetes, etc.).  Some very minor liver abnormailities, and my whiteblood count was lower than normal.  My neuro is currently convinced it is some type of post viral response, and not ALS.  They still don't know what it is for sure, and this is the hardest part...not knowing, while the symptoms persist and may be gradually getting worse (I can't tell if they are getting worse).

The hardest part is NOT KNOWING what this is, and that the symptoms are the same ones seen in a tragic disease.  

[twitch_city]

Regarding AlS

I am a 35 year old man and am afraid of the dreaded disease.  I have been to three neurologist. My symptoms keep progressing and I am confusing my doctors.  I have had all the blood test, emg,eeg,mri of the head, Cspine,3 catscans of the head.  My neuro thought I should go to a teaching school where they see Als patients.  One report was that most General Practionners will never see a case of ALS.  The average Neurologist will only see one patient in is career.  I am really scared too so I know how you feel.  I continue to research this topic and would like to know what is wrong with me too.

[eloridas]

GROUP HUG!!!  I am going to post under my own "Subject", but though sorry to hear about your frustation, it is nice to be able to share.

[eloridas]

Hey! missy.  I also have had similar symptoms.  I had as a mid teenager (in the 70's, so I kept it to myself-I didn't want people thinking I was doing drugs or anything), sensations of water trickling down my legs.  At age 19, I was told that it was rheumatiod arthritis.  At age 24, I lost my first child and my arthritis seem to come back with, BUT MUCH more severe.  Six months later, I underwent numerous proceedures for a pre-cancerous condition.  Finally a year later, I received multiple injuries in a devistating accident-some of which could not be corrected and will be with me for the rest of my life.  Being in "chronic pain", made me feel that I could not escape from it--that never ending "feeling" is what made me depressed.  Going to a Pain Management Center gave me a "break" from the pain.  It didn't take the "Chronic Pain" away for good, but it helped me get back to a "functioning" level, physically and mentally.
--Just this past Spring, I underwent a cervical fusion of my C5/6.  First time separated from my 6 year old, who is severely handicaped.  The overwhelming worrying about him, made my hospital and recovery difficult.  I was also experiencing severe migraine headaches (which though were extremely painful at times, the majority of them were overwhelming pressure on the back side of my head and confusion---I thought I just lost my mind or had severely depressed).  It took me several months before I saw a neurologist, because I assumed it was depression (which I saw a counselor for).  Once I saw the neurologist, he identify and treated the headaches immediately.  I also experienced neuropathy into my left side extremedies, almost identical to what you discribe in your original comments.  The symptoms seemed to come and never totally go, but seem to worsen with each episode.  The neurosurgeon ordered an EMG that showed slight problems and a MRI that showed possible compression on the thelac sac.  He also wanted to do a myeologram due to the metal plate in my neck distorts MRI films to rule out the compression, but so far has not done so.  He also has not done a scan of any kind of my head/brain.  I requested to go back to the Pain Management Center, and I have been prescribed a medication that has quickly become my "new best friend": Neutontin.  I no longer severely fatigued by the end of the day trying to function.  It actually helps prevent some of my migraines and confusion that I still experience.  And helps with that "rubbery" feeling.  Also, I found out that it is also a RA medication.  My comment about it is:  AAAHHHH!!!  I can't quite raise my arm really high, but I feel I can now work "WITH" whatever is going on.  Monday, November 26, I start with Pain Management---YAH!!!  To work on releaving and identifying the nerves in my neck/back that are also related to the problem.  The neurosurgeon has only told me that what is going on is complicated.  He has not commited to any diagnosis, other than the neuropathy.  I hope you and alfa914 start feeling better soon.  I know it's not easy when you want/need asnwers.  eLori.

[becjo]

Alfa914- I just wanted to let you know I appreciate your cyber hug!  It is definately scary to worry about things, isnt it.  In a way, its comforting to know you're not alone but I also see I'm not the only one who is letting their worries get the best of them!  I hope your neurologist appointment goes well.  Will you follow through with more tests if that's what they want?  I am frightened of the EMG - I've heard bad things - but I dont want to scare you anymore.  I'm sure it'll be worse in my mind then the test could possibly be - but I think the results are even more scarier.  The results will either bring a HUGE relief or a HUGE scare of a lifetime.  Let me know what you decide to do if you want.  Hang in there!  And take care of yourself!

[alfa914]

Hi, becjo...May I give you a cyber-hug?  I just found this site last night and I can't believe the people with the same symptoms as me.  It seems like there is a very common thread here for those of us suffering with muscle twitches, weakness, spasms and the like. That is, we have worked ourselves up into such a fear of the dreaded 2...MS or ALS.  I know that I'm having to take Ativan everyday until my neurologist appt. next week, I'm so frightened.  I had an MRI last year that was normal, but I didn't do the follow-up work with it such as the EMG. But, I also know that the odds are in my favor that it's not some dreaded disease but maybe a result of anxiety disorder, fibromyalgia or maybe the virus I had in the early summer.  I've had anxiety/panic since the onset of menopause 2 1/2 years ago, it was very severe at first but seems to be waning as I get further into the menopause period. And yes, anxiety and depression can cause symptoms that mimic lots of disorders.  I do know that the first symptoms of all this happened after a period of severe stress in my life and I had a very bad case of the flu. That has been over a year ago...and from what I've read I would think that things would be much worse for me after a year if it were something bad.
I guess I just want you to know that you're not alone...that from what I sat here and read last night, our symptoms seem to be a pretty common complaint in this field.  It doesn't help that we work ourselves into a fear...which probably makes the condition worse.
Doctor...can you make two ladies feel a bit better? Give us a glimmer of hope here :) Thanks for helping people out here...when I found this last night, I couldn't believe that doctors would actually give of their time to answer questions from strangers.  I'm sure you've been told this before but, being in this posistion is truly frightening...and it's so good to read your common sense answers. Thanks :)

[CCF-Neuro-M.D.-JT]

I remember you well from our previous communications and I'm glad everything looks normal so far.  ALS usually affects men more than women and most of the patients are over 50 years old. However, women in their 30s can certainly be affected.  

Having said that, your clinical history and symptoms of generalized weakness are NOT representative of the typical clinical syndrome of ALS.  That doesn't mean you 100% don't have it, but it is unlikely. An EMG would not be out of the question just to take a look at the integrity of your muscles and nerves.  If your neuro doc can find objective Lt sided weakness, then an MRI of the C spine may need to be considered(if it already hasn't been done). Otherwise, see what your OB thinks. Hope things work out for you.