My sympt. go rapidly-now I feel wekaness in my face muscles in chin and cheeks, totally no strenght.My speaking and eating is so difficuly.Also have weak neck and pain there and the same in my right footIts a crazy disease and so rapid.Im going on friday to als doc. and another emg I think I wll have to stay for a while.i didnt know that ALS go so quickly.Wish me luck on Friday, but I think I will get my dx then

Good luck Anna. I hope the doctor can figure something out for you. I am sorry for your struggle. I am really glad you got an appt with an als doctor. This way you can know for sure and then get the help you need. I will be thinking about you Friday, so be sure to let us know how your appt. goes. Leslie

Thx Leslie, I think friday it will be rough day for me, but I need to know if it is als to do some preparation for my future.Im so angry and scared Im only 26.

Hi Anna,

I am wondering how your EMG went. I know the doc. probably hasn't told you anything yet, but how did you do with it and how are you feeling? It was yesterday, right? Let us know, because we all care! Leslie

Hi leslie im so angry and confused.I did my tongue EMG and it was clean.My neuro, said that I need to go to psychiatrist, that Im nuts and there is nothing wrong with me.Im not crazy I know what is happening with me, now even walking not a long distance is very difficult.My cheeks are weaker (I know beacause I cant smoke like I smoke in the past).God damn I see that I will have to struggle with this disease alone.Still confused and depressed.

I'm sorry to hear that you are upset, confused and not feeling well. On the positive side, though, please be happy that your EMG was clean. That is really, really great news! I believe that you are having the symptoms that you complain of. Sometimes, as many other members have told me, the doctors don't know and they will blame it on anxiety or stress. My doctor laughed when I told him my muscles cramp in my sleep and that they stretch really hard and that I wake up like that. He laughed and said that was really weird. None of us need to hear things like that from the people we are asking for help from. Check out my post good news/bad news and the reply from Jamie. Have you tried the vitamin regimen that he and others here have talked about. It is worth trying. Don't give up Anna. You know your body and you know if something is wrong. But, still be very happy about the EMG, something else is causing your symptoms. Keep in touch. Leslie

Hi Anna. Don't let all this get you down very much. First of all, remember there are no tets for ALS so the docs can only go by what they see. They can't feel the weakness like you can in your muscles, nor can they see tingling. Sometimes fasciculations don't get picked up on the tests right away. If you do have ALS it will show up enough for the docs to see it, sooner or later.

Meanwhile, it is logical for a doc to advise mental health counseling while waiting to see what develops. It is probably the only thing they have at their disposal to suggest that you can do in the meantime while waiting.

Basically, a little extra support right now is not a bad thing. And if you do have ALS you will need all the mental health you can muster so I'd take him up on the suggestion.

Dear lesli, my ASL doc told me "you are reading to much internet and if you have some problems in yor life you are moving them to your body and they mimics diseases and you are one of that kind of person".Well Im starting to thinking-maybe it is possible.My 2 EMG's were clean,CK was wery low, Im 26- so maybe Im freaking out. It is called compulsive-obsesive disorder.So There are 2 thing Im a freak or I have early stages of ALS.

I have heard from others that there is anxieties from reading the internet and diagnosing yourself. I have thought that about myself in the past. Like Cindy said, it can't hurt to get some mental help and see what happens. Wouldn't it be wonderful if stress was causing you to have weakness? When anxiety was mentioned to me my thought was, I am going to do everything the doctors say because I don't care what my diagnosis is, I just want to get help to make the symptoms go away. I know you want your symptoms to go away, so do what the doc says and hope for improvement. If not, you can move on from there. Try to rule everything out. Leslie

Anna- you are not a freak if you have an obsesive-compulsive disorder. This is a very treatable condition and there are wonderful meds that will give you a new lease on life. Please don't despair. My advice is to find out what you have first, and THEN go back to the internet and learn all about it. An individual informed about his or her condition can be a big help to those who try to treat her. Cindy

I hope this is mental disorder really, well time will show.Right now Im going to special therapy and we will see what is wrong.

Please let us know how things go for you. We are all here for you Anna! Leslie

DEAR anna You sound like you are obsessing on ALS Even if you have ALS there is nothing you can do but get on with your life do something you love get a hobby go on a trip exercise as much as your able to get a job fall inlove quit smoking that will kill you go on vitamins go to socials Get off the idea you have ALS I try not to let this disease get to me and I know I have it. you THINK you have it I push myself everyday I cook when my arms are so weak I talk to everyove even though I slur my words I walk as long as I can everyday even though my leg tire I clean my house even though I get short of breath I have ALS since 1999 and you dont hear me obsessing .I worked until I couldnt talk on the phone well to my patients. I never give up or dwell like you have been your young and before you know your life will pass right in front of you You need to think happy thoughts and forget about ALS YOU PROBABLY YOU DONT HAVE IT ANYWAY! so get out there and enjoy your life !

I know that Pat.But it's so hard no think abot it, because I feel so terrible.I cant eat and I cant speak like before, walking makes me so tired.it is so hard for me, Im 26 and I wanted to build my future with my boyfriend.It is just waiting game.But anyway how long should it take to find something in EMG?My tongue is short, flat and twitching, tha\e same is with my legs and my jaw, but EMG didnt pick up anything?Is it normal?

Patricia, you have such a positive attitude which is great. You always hear a positive attitude helps more than anything. You also must have wonderful support - it would be hard to be positive without feeling secure with family and friends. Anna, try and dwell on what you can do, and not on what you can't. Easier said than done, I know. Just know, we are all hoping for the best for you.

Hi Patricia. It's great that you keep trying to converse even though your words slur. That is a skill I am working on. I don't mind if people see me trip or drop things or struggle with anything else, but on the days when my tongue feels "thick" I'm very self-conscious. But I was never shy before so I'll probably adjust! :-D

Girls you are amazing!I was very talaktive and self confident person, but now things change.Im not talking to much because of tongue and my jaw.Maybe I shoul try talk a little more like you.By the way Cindy I also have new symptoms and Im going on thursday for another EMG.

By the way girls, have you beent tested for Lyme Im thinking abou that.What kind of test should I do?I know that ELISA test is not very sensitive.Any advice?

Hi Anna,

It is very important for anyone going through a workup for symptoms like ours to have a Lyme test. From the research that I have done it seems many of the blood tests can come up negative, but you can still have Lyme. A spinal tap is a good test. Ask your doctor about it because your symptoms are similar. These symptoms are similar to a lot of things. I know it's difficult to get doctors to do tests, at least it is for me! But, give it a try. Hope your doing okay.......Leslie

Hi Anna,

I was happy to see that the Cleveland Clinic doctors finally answered your questions about your condition. It sounds like you don't have ALS, but maybe MS. That isn't great news, but it is better than having ALS.

God Bless

Conrad

Anna,

Did you go/talk to Cleveland Clinic? I guess I missed that, I thought you had only talked to or saw the docs in Poland. Did you get a Lyme test? What was the discussion about MS? Hope your doing okay!

I dont understan, what Vantec is talking about?I live in Poland and Im waiting still for dx.

Ohhhhhhhhh, I know I got the reply from the docs on another forum.He thinks Im not having ALS-but it is only advice.

I dont understan, what Vantec is talking about?I live in Poland and Im waiting still for dx.

Here is what the Cleveland Clinic doctor told Anna.

Conrad

anna1980
3/1/2007
. I'm 26 girl from Poland.Since July 06 I've had a terrible headaches-tightness of face and head muscles.The pain was 24/7 and drugs didt help.During this pain I had dizziness and strange sweet taste in my mouth (I couldnt drink cola,tea and eat chewing gum I couldn even smoke because of that taste.I had my RMI of head and neck and it was ok.In Nov.06 pain had gone but i started to have pain and weakness in my legs muscle also my face muscle and tongue were sensitive to could (feel like numbness).I had some fasciculation till Jan. 07-now they are almoust gone.Since Jan. 07 my tongue became weaker and I feel is shorter than before.Also my jaw is weaker and feet.Ice done my CPK and EMG-1 in Janura only with legs and one of my tongue last week.I still have pain and weakness of my legs and tongue.My neuro doesn't see anything.Im thinking about ALS, because of symptoms I have.Is it possible that my spastic pain of my head and face muscle (7 months) was the begining of ALS?really don't know what to do?Just sit and wait or search for other reason.
P.S I am sorry for my english but Im from Poland.

CCF-Neuro-M.D.-SH
3/5/2007

anna1980 First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes. I do not think the symptoms that you describe are related to motor neuron disease (also called Amyotrophic lateral sclerosis [ALS]). ALS presents with painless weakness, atrophy and fasiculations. Numbness and pain are not the major features of an ALS presentation. Your symptoms are concerning and do warrant further testing to determine what is going on. The alteration of taste is frequently seen as a drug side effect when drugs such as topamax or diamox is used. Strange tastes are also encountered in some seizure disorders (as an aura). The headaches that you describe are non-specific, but sound like they could be migraine headaches possibly precipitated by TMJ (tempromandibular joint) issues. I agree with getting the EMGs of your arms/legs and tongue, to help determine if a neuromuscular disease process may underlie your symptoms. I would suggest a trial on migraine prophylaxis medication such as elavil, lyrica, nadolol, etc. I would also suggest some screening blood work including CPK, aldolase, B12, ESR, ANA, TSH, copper/ceruloplasmin and vitamin E level. I would also recommend a repeat MRI of your brain/cervical spine to evaluate for any sign of multiple sclerosis. I hope this has been helpful.

vantec,

CC told me the same thing.....

If you speak to people, ALS has all sorts of weird things...including numbness, pain, etc.

What the Dr's say, is basically, the bulk of cases.

They also say widespread twitching is usu. not ALS...., but if you get online and see cases....you will find about 1/2 of cases start with twitching..

Just like I was saying on the other thread..........docs vary as well as pals symptoms.

Hi anyone with slurred speech I found it you tell the person before hand I have a speech problem they become very nice and helpful People sometime have thought I had a few too many and they catch a attitude ,But now I am up front and with any neuro problem it get worse with stress I was in a auto accident and when the cop took the report he wrote I was drunk Now I wear a braclet that says ALS slurred speech which also is very helpfuk So get it out of the way I HAVE A SPEECH PROBLEM and the stress of peoples reations are out of the way. It took me awhile to do it but it does make a difference Take care all Pat

[The best test is a spinal tap I went a year ago no big deal very accuate QUOTE=anna1980]By the way girls, have you beent tested for Lyme Im thinking abou that.What kind of test should I do?I know that ELISA test is not very sensitive.Any advice?[/QUOTE]

Hi Anna,

Did you have your EMG yesterday? Just wondering how you made out and hoping for the best! Leslie

My EMG is bad, really bad.I have 4 muscles including tongue abnormal with fasc. and sharp waves.I have also some myotonic changes, so Im waiting for my visit in Neuro. Hospital.It was rough day for me.They think ALS possible, but right now have to wait for clear dx.

Sorry to hear that Anna, hope its anything other than ALS. Try to keep a positive attitiude...... I know its hard, but its important. We are all here for you.

Chad

Right now, docs are trying to find whats wrong with me.I had strange autoimmun.symptoms for years and they are thinking about autoimmun. disease or genetic thing.Well time will show.

Anna.

I hope and pray that it is not ALS. Was this the same doc who said you had a psychiatric disorder? That's scary. It seems you have been suffering a lot lately, being sick and not knowing. Maybe you can start making plans to live your life while the docs figure this out. Like Chad said, try to think positive. Keep in touch. Leslie

No Leslie, it was ASL specialist told me that-what an idiot!My neuro told me about other possibilities, because she is my neuro for a long time-so she knows what was happening to me 2 or 3 years ago.i had so many strnge things including strange symptoms in my mouth, strange thing in my skin for a long time and totally disaster with my teeth.I cant also put on my weight and Im terribly skinny.I dont know what to think, I am trying to be positive.

Well, at least you have a doc who is listening and knows something is going on, right? I think there are still many things it could be and your future is bright! I just hope they help you soon, Anna. Many of us know how bad it feels to be sick for a long time without any help with it. I just finally got my appt. for EMG and NCV for 3/29. I was happy it was in 3 weeks, but really want some symptoms relief! I am sure you feel the same. Did you happen to look up myotonia to see if any of it fits you? I hope you have a really nice weekend. Leslie

Yes Leslie, my doc told me something abot it because I had in my EMG something with my thumb-fasc., short waves and som myotonic thing I dont know.But its affecting all my body muscles at the same time-so it is really strange.

Anna sorry to hear you still have no answers but I didnt get a answer for 5 years and they say the longer it takes to dx the better the outcome is because ALS is usually fast and furious. The are a whole list of autoimmune so what you may have may be treatable Hang in there. Pat

Hi, Ive had some blood test and I have elevated TSH-thyroid hormone and sodium on the borderline (elevated).My TSH was always ok and now it has changed.Do you think it has something with ALS?Im still waiting for DX and my EMG was abnormal.

Hi, Ive been to very good neuro in capital city of Poland.When I first saw that neuro, I thought what this old lady doing here.She said that she didtn see any neurological abnormalities and Im perfectly healthy woman.I showed her my EMG and she said that it means nothing LOL-full of fasc. and short waves.Im thinking that docs. know less than we are.So Im still without DX.2 dosc said no ALS but I know that I have disfunction of lower motor neuron, how long I will have to search for DX?Nice day.

Keep searching, Anna! There is an answer to this mystery, but it looks like you'll need patience to find it. By the way, I've been thinking about you and wonder if the answer to your condition lies in your enviroment. For example, I read about someone who had strange neurological symptoms that were eventually tracked to a reaction she was having to the glue that the contracter used when she had new carpets installed.

You've probably uncovered every stone when looking for answers but I just thought I'd bring it up...Cindy

Cindy is so right. It seems that when we have crazy neurological symptoms our minds can't help but to try to think of anything and everything it could be. I have wondered about the blown in insulation I had put in my entire house (and the dust that collects from it constantly) as well as the poison I used all over the house when I saw a mouse once. There are just so many avenues to explore. But, I think we know our bodies and we know when something is wrong, so perseverance is the key......don't give up trying to figure it out. There is no reason to just live with something that has changed your quality of life! Good luck Anna, I too think of you and pray for you often. You too Cindy! Leslie

I am trying to be calm, but its not that easy.I think I can have BPB and thats why thay dont see anything.Im so tired of docs. and the situation but Im trying to be positive (Im 26 so I hope that maybe some diffrent illness attacks me).Well this week Im going to throat doc. and Im waiting for neuro visit in hospital.It will be 6th neuro.I pray for you girls too.

What is BPB? My brain isn't working so good lately!

I mean PBP, My brain doesnt work too, Leslie.

I should have figured that out! Thanks for posting it. I guess we all have our days!

So, I have my DNA blood test and I have Lyme.I hope it is only Lyme.

That is wonderful News You are one of the lucky ones Hope they put you on antibiotic as soonas possible I never thought lymes was a problem in Poland I hear alot about it here in New Jersey

Thank Yopu Pat, Im still waiting for letter from DNA Laboratory because I just called them and thats why I know.I think when I receive my DNA test I will have to go to hospital an lyme specialist.Lyme is a big problem in Poland, but I dont remember any thick on me.I hope its only Lyme.

I'm so glad there is finally some news for you. I really hope you get better after treatment. Lyme can be a tough one to fight, but at least it is something you can fight. Keep us informed! Leslie

Anna- this is good news! I have heard that Lyme mimics ALS but never knew it is so hard to diagnose! So what happens next? What treatment will they prescribe? Cindy

I received my Lyme letter from DNA Laboratory-positive score.I sent it to hospital And right now Im waiting for reply and treatment.Nice day.

You have a good day too! Let us know what the treatment entails. Regards, Cindy

Cindy, Lyme is hard to diagnose because the most popular test in Poland ELISA is not a good one, it only sometimes detects Lyme in your blood.So i had a PCR Real Time test, it is a special test from your DNA and it is 100% sensitive.By the way, docs in Poland dont think about Lyme sa often as they should.Wish you all nice weekend.

Hi Anna, our tests (and docs) here for Lyme aren't that great either. The docs usually draw one, either the elisa or one of the other no good tests and if they come back negative they drop it. When I researched Lyme I found that they should try all the different tests and even a spinal tap to make sure it isn't lyme. I am really glad you found a doc to get a better test. These docs should look for it faster, because the longer a person waits to treat Lyme, the harder it is to treat and the more damage it does. Some people have Lyme go so far that they get worse with treatment before they start to get better, and they have to be treated forever! So, hopefully you can get them to move fast and get your treatment started so you don't suffer any further problems. Good luck Anna. I am so glad that you got a diagnosis. Leslie

Leslie, I ve done the test by myself, for my own money (its expensive).Every doc said "no it is not Lyme"-they are not too clever.So sometimes you have to search by your own for the answer.Even my neuro said"no, it is not Lyme".But I called her yesterday and told about my Lyme test.She said"oh,so u have the answer.Lyme can cause that kind of thing".So, now they are clever - LOL.

Hi all,

Im starting to take my abx, I hope they will help me a little bit.My dx is late lyme.I will give you info if something new will happen (better or worse).Nice day.

Anna,

Oh my god, i'm just reading your entirety of posts and have exactly the same issues, mine going back 10 years...... Everything form the tongue, to jaw, to legs, etc....WOW

I've just sent my blood to IGENEx for testing.

Rgds,

Jamie

Jamie,

Can you tell me how that works? I would like to give it a try. Thanks. Leslie

Jamiet,
good thing You have done.Lyme is a big problem and as far as I know that laboratory is making the best test in US.have you done PCR test?Im starting my therapy after Easter, right now Im taking doxycycline, but this is not good for chronic Lyme.I had to find the doc. who is treating Lyme very agressive, because the rest of the docs are always giving only doxycycline.If you want Leslie and jamiet, send me private massage and I will give you details which abx I will take.

leslie,

You must find a lab that will draw your blood, separate it (to get serum) and give it back to you, then, you DHL / FEDEX it to Igenex labs in California. go to igenex.com, print the test req. forms, get your dr. to sign them. It will cost $450.

Do the 6050 test and get the test requirements also, it will tell you how many tubes of blood and serum needed and the shipping requirements. The 6050 test includes all, including the DNA test.

don't let your Dr tell you to send it to their labs

Good luck

Rgds,

Jamie

In my case it was easier.I just went to a special DNA Laboratory, they took a sample and then after 2 weeks i knew I had Lyme DNA in my blood.By the way Lyme is a really big problem, there are very interesting sites on internet about it.

Thanks Jamie, I will have to start investigating to see if we have any labs around here. I suppose it would be worth the money on a charge card either way it turns out, right?!

Be very careful about lyme testing and treatment. Do a lot a research first before undergoing any treatment.

There is a lot of controversy surrounding lyme testing.

Bowen labs were reporting lyme in 100% of blood samples submitted?!?!?!

One member reported disastrous results following her father's treatment for Lyme. He had been diagnosed with ALS but also obtained a positive test for Lyme. Once he began the treatment for lyme his conditioned worsened dramatically.

Check for prior posts by Upila.

Upila are you out there?

Good luck and be vigilant!

Thanks, I will do research and be careful. I think I would want a positive retested too. I did read that if a person has a severe case of Lyme, the medication (antibiotics I think) make them much worse at first. Then the patient gets better, only to get worse again and need another round of antibiotics. I read that this is only when a case of Lyme has gone so far that there is neurological damage. Is this what you read also?

I think in Upila's father's case - he just got worse and worse and there was no improvement at all - they became quite desperate trying to figure out what was going on.

I think we're all desparate.

I've read this also and will definitely take that into account. That's a concern of mine, but what do you do? I've looked up the symptoms of lyme and the conversations / post on lyme sites and it's pretty amazing.

thanks for your help

Regards,

Jamie

To All The best test for lymes is a spinal tap. There are Mds that have their own labs and test test test and than treat something you dont have because more than half of them are false positive I KNOW WE ALL WANT TO HAVE LYMES ME INCLUDED but the truth is most of us, if not all of us dont! Pat

Spinal tap its not a good test-belive me.But first important thing is positive test and symptoms!If you have positive lyme test you dont have to have an active LYme.In my case the most imprtant thing were my fingers joints with some arthtris changes, but no good arthris in blood test.