I think its over...

[anna1980]

Hi, I'm 26 girl from Poland.I am scared to death bacause Im probably have ALS.My problems started in mai this year with a horrible headaches.I felt like all my muscles of my head and face gripping so strong.It was every 24/7 till september.Ive done MRI and other medicals.No one knows why and what was that.Now since the half of september i feel my muscles on my hands, abdomn and legs are very wick.Atfer these appeared pain of my aye balls, first right then my left.At the same time i started to feel cramps on my right chick, right hand and leg-sometimes itching.Now i have problems with my left back part tongue its hard to put the food to throat and swollow.Im sure Im ALS and Im so scared.all my muscles are moving, i feel pain of my both side of tongue and legs musceles.Im so scared,what do you think about these symptoms?

[liz]

Hi Anna -

Sorry you are having so much trouble. I don't know what to think of all your symptoms but I can understand why you are scared. Have you seen a neurologist who specializes in ALS or Motor Neuron Diseases? Maybe that could help you get some answers.

Liz

[anna1980]

Since my headaches Ive been to 5 neuro, last week I ve been to one (but there was no problem with my tongue).Im going to see my neuro tommorow.Is it possible in ALS, that i feel pain on my tongue?It feels like very cold air on my ton., specially when I smoke?Is it a common symptom?Please Ill be very thankful for any replys.And what about eyes, it started with a horrible pain of my aye ball (?).Have you heard about familiar symptoms in this illness?

[fotiostzimas]

Anna1980
Read Orpheous theory This will make you to fell better.
Geia hara

[Mike27]

Hi Anna,

I think you better wait and see what your neuro says. I've never heard of some of those symptoms in ALS, but I'm not a doctor.

God luck and let us know.

[patricia1]

Hi anna Sorry you are so scare The symptons could be anything It doesnt sound like ALS . You must see a als doctor to know for sure Mygraines can cause all types of symtoms Good Luck Pat

[vantec]

Hi, I'm 26 girl from Poland.I am scared to death bacause Im probably have ALS.My problems started in mai this year with a horrible headaches.I felt like all my muscles of my head and face gripping so strong.It was every 24/7 till september.Ive done MRI and other medicals.No one knows why and what was that.Now since the half of september i feel my muscles on my hands, abdomn and legs are very wick.Atfer these appeared pain of my aye balls, first right then my left.At the same time i started to feel cramps on my right chick, right hand and leg-sometimes itching.Now i have problems with my left back part tongue its hard to put the food to throat and swollow.Im sure Im ALS and Im so scared.all my muscles are moving, i feel pain of my both side of tongue and legs musceles.Im so scared,what do you think about these symptoms?

Hi Ann,

Headaches are almost never the first signs of ALS. That is not to say that people with headaches don't have ALS, but it is usually one of the last signs of ALS, when your breathing muscles get so weak, that there is too much carbon dioxide in your blood, and you will first notice it when you wake up in the morning, and as your lung's vital capacity gets down to around 30% of normal, you will have bad headaches all day, and must make a decision if you want to go on some kind of ventilation, like Bipap, or a tracheotomy. Do you have breathing problems?

If your muscles are moving, do mean that your muscles are twitching, or in other words, moving involuntarily (without your help), and does this happen, only when you are laying down, or does it stop if you stand or walk?

Eye problems can be a sign of ALS, but in addition to pain, they should feel dry. Do they feel dry too?

If you are having a hard time putting food down your throat and swallow, it could mean ALS, but it could also be Myasthenia Gravis and other neurologic conditions.

Does the pain on both side of your tongue and legs muscles change during the day, or is the pain constant? In almost all cases of ALS, the muscles will cramp, and will give you pain, but not all day long.

I understand why you are scared, but try and relax. Maybe I can help you more, if you can answer my questions.

Conrad

[anna1980]

Now since morning I dont feel pain in my muscles.But its getting worse, abut hour ago rest of my right side of tongue started to be under controll.God is it possible?It was only hal an hour to make it!!!!!!!!!!!!!!!

My muscles twitching me always when im laying or sitting, never when Im walking.After a lot of exercise ifeel my muscles like I was doing exercise for a week.Terribly tired. This this that kind of pain, no cramps.

And my tongue like somebody puts the needle into it,like a cold touche.

My eyes dont feel dry.

[anna1980]

Im terrified becose if it will happen with my other side, I feel the same pain, i wont be able to speak!!!!!!It took only 5 days!!!!!!!What do u think abot it????

[patricia1]

It sounds like your having an anxiety attack on top of everything else .Do you have a family a doctor a friend Please call an tell someone PLEASE Pat:confused:

[Beebe]

Hi Pat, How are you doing???? Haven't heard from you for awhile. Stephanie asked about you too. Did you get everything sraightened out??Fondly, Beebe

[Beebe]

Hi Anna, Where do you live?? Do you have family close by? Please let us know what the Neuro. has to say. My Best to you, Beebe

[patricia1]

Hi Beebe everything ok had some problem logging in Arms are very weak happened all of a suddden I was good for 6 years only slurred speech now its in my arms I thought slurred speech was bad but lossing my ability to cook serve and dress is far worse But I am still lucky it took a long time and the doctors are puzzled why half of the docyors out there are clueless when it comes to the brain. and I will not let this get to me Pat

[anna1980]

I have friends and family, but they are scared more than I.Is it possible to progress so fast (i mean my bulbar symptoms).For only a week-so bad?Im depressed.I cant stop crying, why me Im only 26 - so many plans, dreams and now everything ends.I alwayes wanted to have children and home....God why????????????????????

[cartman]

anna

i wish to all the gods there was something i could do for you. other then listen with compassion and tell you my symptoms came on like a run-a-way train. it seems like nothing is consistant with these neurological diseases. i am in the latter stages, but i am older and have a liftime of history to give me comfort with my exit. i feel for your situation more then i can express, life is very unfair, you should be given your time.

cartman

[anna1980]

For the 3 hours Im going to my neuro.Im scared.What to do if she will Sai, its not a ASL.Search, for another neuro?What to do I dont know exectly what to do after?And if she says it is ALS how to live further, how?Do medicine knows familiar illness with that kind of symptoms?????????

[patricia1]

anna when is your appointment with your neurologist? pat

[anna1980]

for an hour, but i think she is not a specialist in als.

[janf]

please don't panic just pray, we all understand our hearts go out to you i will pray for God to give you peace. janf:-D

[cartman]

anna

you have to get yourself to a university that specializes in als, it is difficult to dx and therefore there has to be all of the technology available to dx. i went to university in st louis who had the expertise and technology.

cartman

[CindyM]

Anna- do you have an appointment with a neurologist? What day is this appointment? Let us know how the meeting with the neurologist goes. Cindy

[Al]

Hi Guys. Anna says she is from Poland. I'm not sure if she is still there because it's not in her profile but if she is it opens a whole new realm of where and how she gets treatment. I have no knowledge of the Polish health care system. Does anybody here? AL.

[anna1980]

Hi everyone.Ive been to my neuro and she said that she didnt see any bulbar symptoms (but I feel it I know there are).She said to me not to think about ALS because there she couldnt see any Motor Neuron demages.Im really confused.We've been talking for almoust hour and probably it is some kind of neuro infection, bacause everything started (except my headaches) with eyeball pain and 3-weeks infection in my throat- I didnt take any drugs).By the way, my muscles pain and fasciculation are gone.But still hard to swollow and and feel smth. is wrong with my tongue. She is a good doc. and has some patients with ALS.But Im not sure what to do now, wait and see what will happen and than see another neuro? In Poland we dont have much ALS specialist, because its very rare disease ,1000 ppl are ill.Moreover there is a one clinic, which is dx that kind of disease.please, Im waiting for your opinion.

[liz]

Anna -

Can you get to the clinic that specializes in ALS? The first couple times I saw a neurologist (also a good neurologist, well regarded in the community), he proposed the possibility that my nerve damage was from a very localized infection or inflammation. It wasn't until a year later when more symptoms appeared that he began to suspect a motor neuron diseaseand referred me to an ALS specialist. After that it only took three weeks to nail down a diagnosis. If you don't have ALS that would be great to know and if you do have it hen you can start getting the proper care as soon as possible.

Liz

[anna1980]

Yes I will try to fina a one in Poland and make an apppoitmant.But Lis did u have some strange sympotms like me?I did have throat inflammation and at the same time i was trating my 3 teeth than appears terrible eye pain and all the rest.Mybe I just tryin to cheer up myself.Well i have to see a specialist. The strangest thing is that it starts with the left side and now its the right side.And the main thing that I felt smth. strange in my tongue before it "was unable to move".It means I felt cold and pain and than suddenly I was unable to move it.

[anna1980]

i have another question to ppl with bulbar ALS.Is it happen syddenly?DO you had pains or other symptoms?Please Im waiting for reply.

[liz]

Anna,

My symptoms are limb onset beginning in one hand and now spreading to the other hand and my legs. No bulbar symptoms yet.

Liz

[patricia1]

my bulbar symptoms started with slurred speech very mild and progressed and has been the same for about three years never had pain .now arm weakness pat

[anna1980]

Pat but did Yoe feel in the begining there is something wrong with your tongue, thst it doesnt move like it should.I feel it a nd I feel like Im having to big hole in my throat (funny).

[patricia1]

yes it didnt move quickly side to side and I felt a lump in my throat And I used cough drops thinking it was a cold and post nasal drip That is gone now the tongue is very short ,scalloped and thick looking. pat

[CindyM]

Anna - when my legs went dead and couldn't support my weight the docs thought I had some kind of nerve disorder caused by something toxic. They tested for everything form Vitamin B poisoning to heavy metals. The legs are back now, most of the time, but my point is it takes a long time and lots of tests to get to the bottom of some of these conditions. Keep at it and seek out all the specialists you can. I've been at it for six months and I still haven't had a doc look me in the eye and say it is ALS. The guy at the ALS clinic says we need to wait until/if things get worse and the Neuro says it is some sort of neruo-muscular disease. Me, I think each Doc is waiting for the other to spill the beans!

Try to stay calm. You are doing all the right things by seeking answers. Keep us up to date! Regards, Cindy

[DeeDee]

Anna,
please don't panic. There are SO many diseases that mimic ALS that are curable.
Don't give up hope or feel helpless. You are young and strong so the odds are in your favor.
God Bless
DeeDee

[patricia1]

I still think I have a als minic but I dont know who could tell me I been all over and they say I have a slow moving ALS since 99 but what worries me is that they are missing something and I been wasting all this time Pat

[anna1980]

So as I see from your replies, It has sterted slowly, I mean yor muscle or tongue were getting weaker and weaker.I have diffrent situation.It was ok and suddenly one day i felt that i cant move and swollow and three days after my other part of tongu (which was working properly) was demaged (i started to feel pain in that part and after half an hour i couldt move).Now Im still having horrible muscle pain (all-legs and arms).So I have hope that it wont get worse.Im talking pills for neuroinfection-there are very strong.Althoug today for 4 hours it was ok with my swoolowing and moving.God what's wrong with me, do you have any other ideas except ALS.By the way other nero (the second one who was helping me with my headaches_ ask did i have infection and i say yes.She also said that is to fast for ALS but hard to say it what is wrong.

Wish You all happy New Year!!!!!

[patricia1]

hOW about strep throat,or mono PAT

[maf]

Hi, I was reading up on als to try and figure out what's going on with me. I have a lot of the symptoms of als and I'm pretty scarred. I too am 26 yrs old, I have a 2 1/2 year old girl and just had my second child 3 months ago, a little boy. I'm really freaking out that they aren't going to have a mommy. My symptoms started out 1 1/2 months ago as back tingling, I went to a chiropractor and had some work done but didn't help. I then started feeling dizzy, lightheaded all the time, this went on for a week. I ended up going to a doctor and we had an MRI done with contrast so it was the good one, nothing was wrong. Then thinking I had a sinus infection between my eyes I went to the nose, ear, doctor and got on some antibiotics. I've been on then for almost two weeks and feel better but still lightheaded when I bend over and come back up. Then last week I was walking in the store and all of the sudden my legs felt like jello, really weak. I went to the docs this Tue and he ran some more blood test which all came back ok. We've ruled out the little things with the blood work. I just started having twitching of the muscles all over my body, just random, usually when I'm lying or sitting. I'm going to get a spinal tap to see if I have an autoimmune disease and then that will let me know if this is als or not. I was thinking it was ms but there is no muscle twitching in ms. If this is als it's progressing super fast. I wanted to let anna know she's not the only 26 yr old that's in this, I'm in the same situation. Have a great day!!

[patricia1]

hi I know you must be very upset but it doesnt sound like als Did you have a epidoral o spinal for your child birth that sounds like a side effect from that maybe its hormones You just had a baby you can believe what hormones do If you are worrird see a neurologist who is familiar with ALS hang in there Pat S

[maf]

hi, no i didn't have an epidural, both births were all natural. I did have the stomach flu a 1 1/2 weeks ago and then a bad chest cold plus I think I still have a sinus infection. But when the twitching of the muscles started is when my worries of als came up. I've convinced myself I have it. My husband isn't convinced yet. Do you, Pat, have als? Do you mind me asking how old you are? If you have it what were you first symptoms, do you have twitching in the muscles? I know everyones symptoms vary. Thank you for writing me back, it's nice talking to someone, my mind has been consumed by this, it's driving me nuts!!!

[Mike27]

Hi folks,

I totally understand everyone's fear and frustration of the unknown cause of these symptoms. But please don't do what I did and self-diagnose. All I did was scare the crap out of myself! I almost gave myself an ulcer looking through medical books and such. (Back before the internet) Please, please leave it to the docs and neuros, that's what they went to school for a gazillion years to learn!

It would be like reading a book to fix your computer (speaking as a computer layman) with knowing nothing of motherboards, circuitry, programs, caches etc etc. You have to go to a geek...er..expert.

There are a number of diseases that can mimic certain ALS symptoms, when we talk about one or two symptoms the range of disease could go into the hundreds! Some are treatable, some are not. You're not doing yourself any favours, both physically or emotionally, by scaring yourself with the worst possible scenario.

Let the docs do their tests. Get second, third or fourth opinions if you want. If it does turn out to be ALS, it doesn't have to be hell. The people with ALS on this forum are LIVING proof of that! They carry on being fathers, mothers, grandfathers, grandmothers, sisters, brothers, sons and daughters. ALS doesn't define who you are, it's just a part of your being. How big a part is up to us!

Good luck!

[patricia1]

hi, no i didn't have an epidural, both births were all natural. I did have the stomach flu a 1 1/2 weeks ago and then a bad chest cold plus I think I still have a sinus infection. But when the twitching of the muscles started is when my worries of als came up. I've convinced myself I have it. My husband isn't convinced yet. Do you, Pat, have als? Do you mind me asking how old you are? If you have it what were you first symptoms, do you have twitching in the muscles? I know everyones symptoms vary. Thank you for writing me back, it's nice talking to someone, my mind has been consumed by this, it's driving me nuts!!!
Yes I have Als since 99 I started with slurred speech nothing else for 5 years . now I have weakness in my arms Stop reading into it your mind can make you crazy I am 60 years old.Pat

[vantec]

So as I see from your replies, It has sterted slowly, I mean yor muscle or tongue were getting weaker and weaker.I have diffrent situation.It was ok and suddenly one day i felt that i cant move and swollow and three days after my other part of tongu (which was working properly) was demaged (i started to feel pain in that part and after half an hour i couldt move).Now Im still having horrible muscle pain (all-legs and arms).So I have hope that it wont get worse.Im talking pills for neuroinfection-there are very strong.Althoug today for 4 hours it was ok with my swoolowing and moving.God what's wrong with me, do you have any other ideas except ALS.By the way other nero (the second one who was helping me with my headaches_ ask did i have infection and i say yes.She also said that is to fast for ALS but hard to say it what is wrong.

Hi Anna and Happy New Year to you too!

I really don't think you have ALS, because your symptoms are moving too fast.

Here is a list of diseases that can be confused with ALS:

Multifocal motor neuropathy
Kennedy's disease
Inflammatory myopathies
Dysphagia
Peripheral neuropathy
CIDP
Progressive muscular atrophy
Wilson's Disease
Some forms of muscular dystrophy
Spinal-bulbar muscular atrophy
Adult-onset spinal muscular atrophy
Compression of the spinal cord or brainstem, such as tumors and malformations.
Post-polio syndrome
Spinal muscular atrophy
Autosomal dominant cerebellar ataxia type I
Fazio-Londe disease
Cervical spondylosis
Cytoplasmic-body myopathy
Hereditary proximal motor neuropathy
Hereditary distal motor neuropathy
Hereditary motor neuronopathy with oculopharyngeal involvement
Hexosaminidase A deficiency
Lead neuropathy
Motor neuron disease with macroglobulinemia
Oculopharyngeal muscular dystrophy
Polymyositis
Inflammatory demyelinating polyneuropathy
Scapuloperoneal hereditary motor neuropathy
Syringomyelia
Monomelic amyotrophy
Different types of Motor neuron disease
Thyrotoxicosis
Dermatomyositis
Myokymia
Lithium poisoning
sarcoidosis
Methyl parathion poisoning
Poisoning by organophosphates (the stuff to rid off roaches)
Werdnig-Hoffman disease
Sjogrens
Myesthenia
Metabolic myopathies
Periodic paralysis
Immune mediated neuropathies like CIDP Friedrich's ataxia, B12 deficiency, combination of a stroke and peripheral neuropathy
Multifocal Motor Neuropathy
Hashimoto disease
Mitochondrial
McArdle disease
Tarui's disease
Lyme disease
AIDS

Conrad

[Pollyanna]

Anna, bless your heart! What a horrible ordeal you have been through, and it's understandable that you are so frightened. My husband's first obvious symptoms happened in June of this year -- poor balance, foot drop, difficulty walking. Thank God, there are no bulbar symptoms yet, but I know that will happen eventually. At first they thought he might have PLS...has that been suggested to you? It does pretty much the same thing as ALS, but your life expectancy is longer. (Purely a layman's explanation!!) Also, have you been checked for severe sinus infection? or maybe Bell's Palsy? The diagnosis of ALS is pretty much a process of elimination, so it does take a while. And everyone progresses at different rates. As I mentioned, my husband's symptoms started in June, and a short 6 months later, he cannot walk or even move his feet enough to transfer to or from bed, wheelchair, etc. With me pulling him up or using a hoyer lift, he can stand long enough for me to move the chair up to his back side, and then we very carefully lower him to the chair. So it's been a runaway train for us too!! His brother died of ALS last February, before my husband even had symptoms. The brother had bulbar onset, so it was very different for him. They had diagnosed him with everything from myasthenia gravis to PLS to other stuff I can't even remember before they finally determined he had ALS. As it happened, he and his wife were in Germany at the time, and he went to a hospital in Hamburg where he was diagnosed. I hate to admit my ignorance of geography, but how close is Poland to Germany? Could you possibly go there for treatment???? It was a wonderful hospital...just thought I'd mention it just in case.
Anna, I'll be praying for you. Somehow, you must find a way to calm yourself. If you believe in God, pray like you've never prayed before. Sometimes we try to do everything by ourselves, and pray as a last resort....pray first, and God will help you. He may not cure you, but He will walk with you every step of the way, and carry you when you can't walk anymore!
God bless you...I'll be checking in to keep up with your progress, so please keep us all informed. Honest, we do care, because we've been in or very near your shoes. As I've said before about this forum, we are all in the same boat...different situations and circumstances, but still the same boat! Hang in there, and keep your chin up!

[Jamiet]

I feel your pain, i'm 32 yr old male, have a 5 year old boy and a 6 month old girl. I am just at the height of my carrer, worked my way up the corporate ladder in 8 years and built what is supposed to be a good retirement for me & my wife, and BAM! Aug 06 it all started for me. I've got alot of the same things you list. I've seen 5 neuros, and life has been a living hell since then.

I've sort of moved on past the panic stage, to accepting, whatever i have. I have almost diag. myself and just about conviced it's ALS, based upon what's happened to me and my research. I saw, Oct 30 a specalist at ALS Houston Methodist and were given a clean bill of health, although, i didn't feel like my bill of health. In a matter of 8 weeks since then, things have moved fast, and a letter last week to the ALS Specalist that saw me, prompted a 3 day, full workup, to be done Jan 16 and by Jan 18, i will know what i have. It's funny, because my letter must have contained something she didn't like, becuase the first time i was supposed to have the 3 day workup (which she cancelled), it was going to take 6 weeks.

So, i feel your pain, know exactly what you are going thru, we're young and it's much harder to accept and the kids scare you even more. I can't imagine my little girl, not remembering her daddy!

Anyway, i would suggest a good dose a Tranxene and possibly Wellbutrin / Zoloft or same. It helped me out. I've moved on, trying to live for today, cherishing every moment (yes, i still cry). You need to set yourself up now! Make sure you have long term disability, good life insurance! If you don't have ALS or something of the sort, you will be way ahead of where you are now.

The best of luck to you!

[CindyM]

Plan for the worst and hope for the best! It has been said many times before but bears repeating. Happy New Year to everyone and here's hoping for a quick resolution for all of us questioning what is going on with us!

[anna1980]

Hi, it some kind of nightmare.Now I gave problems with my saliva-to much inside the chick I need to to do stranego moves of my face to swallow.Another symptom appeard twitching on my right side of face and more twiching in my legs.Thats horrible.Today Im going to see throat doctor and Im waiting for my EMG, but april is a first free date to do it.I think I need to go to hospital to check everything.

[cartman]

anna

all of us who are in a health care system that takes care of us on an on-call basis thank god how lucky we are after reading your difficulties in getting immediate health care. please know that are thoughts are with you every day.

cartman

[anna1980]

Hi,

yesterday Ive beent to throat specialist-phoniatrist.He checked ma speech and throat with camera and have seen nothing.But i feel it and I see that me right side of tongue is weaker(I can see this in the mirror, when Im moving my tongue).He said that Im hiper nervous and gave me valium.I dodnt understand why so good doctor said such a stupid thing.It is the easiest way to say that is because of nervous.For 2 weeks I will have my EMG of tongue, legs and arms.Hope I will gest my dx than.he said that Im reading to much of internet and shold not do it.I think he's not right and I know what Im feelinh.

[anna1980]

By the way Im sorry for letter-errors in text, but Im nervous about whole situation and Im nott loking at my posts.

[CindyM]

Anna_ I hope you get some answers within the next couple of months. It can be nerve wracking not to know. Is the valium helping any?

[anna1980]

Hi everyone, yesterday Ive been on EMG and it was normal (almoust perfect, also they said that the cant see any fasciculation).They scan only my legs and hands because they dont do a tongue EMG.The doc. told me that right now she doesnt see any clinical changes in my bulbar area.I dont know what to think about it, bacause I know that many of you had a normal EMG too. Anyway tommorow Im going to see a top ALS specialist in Poland and we will see what she will tell me.Im praying everyday to get answer soon.

[anna1980]

Ive been to top als neurologist and she sid she doesnt see anything.I think its impossible to not notice my tongue and throat symptoms.aybe these are mild syptoms and only I can feel it.Im so depressed I am sure that is the question of time to know that I have ALS now I need to wait for the next symptoms to be dx-what a nightmare.

[anna1980]

hi, im witing for dx still.Now I have probles with my right hand-no strenght, weakness, pain in my bones.is it possible to go so fast after 2 onths sinse symptos?Im so scared I dont know what to do?Please ell me is possible for ALS to go so fast in y age 26?

[Al]

Hi Anna. I have not heard of anyone's symptoms of ALS going so bad so quickly. I still think it is something else that you have. AL.

[anna1980]

Al, thanks for cheering me up, but 2 days ago I had the sme strange feeling on my tongue and next smll muscle on the other side died-I know, because im swollowing different and talking different.I always know the moment whaen its happening.I also have for 2 months pain in my legs muscles specially in the evening, its horrible.Eveery neuro says that i should go to psychiatrist-but I know wht is happening with my body.So the only way is to wait things get worse and thn doc will give me my dx.

[anna1980]

Hi everyone, my thing getting worse rapidly.My tongue is very weak specially left side (Icant put my food to throat) my right hand is very weak and pain and also I feel numbness in my foot.Still no DX, doctors dont know what is happening.How long should I wait to do my nekt EMG, first I made a mont ago?Shoul I make my EMG with all my limbs or just couples of them.Please give me some advice.

[Jamiet]

Anna,

Sadly enought, whatever this is, you need some meds to calm you a little and help you lift your spirits. ALS does not cause numbness, but does cause weakness, but there are exceptions to every rule.

Neurologist have to see clear, objective signs and you'll have to have major problems before they will give you a diag.

Regarding your EMG....3 months is what i've read for time between EMGs.

Rgds,

Jamie

[edna may]

Anna I understand your problem. I had symptoms for almost 2 yrs, I had the tongue, also very hoarse voice, went from doctor to doctor, I was dx as having Spinal Stenoses said I needed a back operation which I did, after which still had the symptoms, all the time voice & tongue getting worse, then they said I'd had a stroke. months of therapy & never improved. Finally A neurologist gave me a nerve test. & Bingo she sent me to an ALS clinic, where I was finally dx. & do you know, I was relieved to have an answer at last. Jut take care of yourself & try to relax ( easier said than done) I am sorry it is so frustrating. But we are all rooting for you. keep at it until you get an answer ME

[anna1980]

Thank You for support.In Poland we have one ASL clinic but its not as good as yours in States.Im going tommorow to the ASL specialist once again I wonder if she could help me.Every doc says" ASL it is not your problem", I think they can only give you DX when you cant speak or move your leg.God give me strenght!

[anna1980]

By the way my EMG and verve test is clean, so I need to wait 2 months to repeat it.

[alviso3]

Hi Anna ... I'm sorry you're going through as much as you are. Its frustrating when no one sees what you're going through. I agree with what others have said, while you wait for a dx, you need to take something for your nerves and sanity. I'm not trying to be mean, I'm just saying that since this is consuming your whole life, you need to have some calm. Good luck with getting a dx. Take care.

[shud]

Hi Anna,
I dont think you have ALS because of your symptons.
Im no doctor.
Try not to get yourself too anxious.
Easier said than done!Take care.

[anna1980]

Well Ive been to ALS specialist and still nothing.It is hard to say it what is wrong with me.I have terrible pain on my tongue and in my TMJ-when Im movinh with my tongue and when Im speaking(she said there is no pain with ALS-but as far as I know it isn't true).Also have problems with legs and arms-very weak, numbness or something, dont know how to call it.So right now I have to wait for my next EMG (I will do that in the begiining on March).My doc. said that I should have abnormal EMG and CPK-something in blood, but this is normal.I will wait with Gods help.Cindy Im happy for you!

[Al]

Anna I think you have to start believing the Doctors. They can't all be wrong about ALS. Maybe you have something but I don't think it is ALS.
AL.

[anna1980]

I hope Al, your posts always give me strenght.The main problem is that nobody can give me any DX and I feel every day worse.It is so difficult to find answer what is happening to me.Im trying to be calm, but it is difficult when I feel all my symptoms getting so fast (now i have problem with my legs-they are very weak and cramps in my feet).I think I will visit all docs. in my city soon.Best for all of you.

[anna1980]

I have question about bulbar onset.I have problems with y tongue and i feel like me right part of throat is bigger-i mean like i have a big hole there, on that side my tongue dont what to swallow.is it normal.I have problem with swallowing my saliva i have to gripping my mouth and use all my face muscles to do it.In the evening my face really hurts.What to do to make it easier with saliva.Any ideas?

[anna1980]

It's me again with new problems.Ive noticed that my jaw is getting weaker.Specially during the night i wake up with open mouth (never do this before).Also its harder to talk and eat because is weaker and my TMJ pain.Maybe you give me some advice what to do.Should i do another EMG with my face and tongue muscles?Ive done it only with my hands and legs 1,5, month ago.Please any advise?Im scared to death

[anna1980]

I was wondering maybe ALS attacks me faster because IM very slim, im 49 kg and 170 cm.I almoust dont have muscles cause of slimness.What do you think about it?

[niceguy]

Hi anna1980,
Have you also looked into Autoimmune disorders? They can cause severe weakness and swallowing / speech problems as well. Changes in sensation have been noted in people diagnosed with ALS but it's very rare and probably the result of something else. I have yet to see anything about physical pain as a symptom of ALS.

I hope you figure out what you have soon, and that's it treatable.

Good luck

[anna1980]

I think things getting worse.Im walking on my heels and my right foot is very weak almoust cant stand on my toes.Is it possible for ALS to go so fast?What can it be?Please any reply Im only 26 and docs.dont know what is happening.

[ltr]

Hi Anna,

I know how hard it is when others can't understand and help. I also feel that way. I have had muscle twitching and weakness so that I can hardly leave the house. I am single with three children and it is so frustrating to have no doctor and no help. Do you have someone who can help you or stay with you so that you feel better? I actually asked my doctor for something to calm me down and whenever I feel anxious, scared, upset or panicky about this it really helps. You said your doctor gave you Valium and believe it or not it will help you so much. Please give it a try. For now, try not to miss these days. You are alive and can live these days. Take one day at a time. I am praying for you. Leslie

[anna1980]

Now Im sure I have ALS, everyday my tongue is getting weaker and swollowing is very difficult.I feel it every day, now my tongue is flat and my jaw hurts when im speaking.Any of you experienced that thing?I mean is yout rotngue goes down between teeth and gets flat?My emg is next week.

[patricia1]

Dear Anna I dont know where you live but you need to go to a als clinic john Hopkins in Maryland is the best Maybe worth the trip Or look for a ALS specialist It took 5 years before I got a Diagnosis and I had some of your symptoms with the tongue and drooling but mostly speech. Lood up on vit B 1 6 and 12 see if that helps I have ALS 8 years still walking breathing at 85% and eating Its only in my arms and speech starting alittle in my legs but I have been on alot of B vit way before I got sick and I believe it slows the progression So good luck hope:) I helped you and god Bless us all Pat

[ltr]

Hi Pat,

Could you tell me how to take vitamin B. I have an appt. with a neuro on Thursday, but I have vitamin B at home and want to start having full advantage of it. I see that it has been mentioned a lot on the forum, so it must have some medically proven advantage. What I have been taking is called B50. It has B's 1, 2, 3, 6, 12, folate, biotin and pantothenic acid. Some of these are at much lower doses than others in this pill. Is there anything special that you should take them with and any better doses? I have heard that B's don't work well in the digestive system and bilingual is better. Thanks for any of your help Pat! Leslie

[patricia1]

Hi its better to take them seperate they are stronger more mg. I take 1000mg subling vit 12 nature Made vit B6 200mg nature made B1 250mg find them in any pharmacy and a presribtion from my md for strovite advance which has all b vits but your need a Rx for it They have alot of folic acid for cardio health keeps homosystin low Hope this helps Pat

[ltr]

Thanks Pat. I can't believe I wrote bilingual---meant sublingual. Nothing like a good bilingual vitamin!! Leslie