very nervous

[jattd]

Hi my name is jennifer I'm 35
I have been having some symptoms that are really upsetting. I started having pain in my ltr leg About 2yrs ago then it went to the other leg I do have sciatica in the lft leg I get tons of muclse pain and fasculations in both leg . Then about a yr ago I started getting burning cramping and sharp pain in my hands. And it stopes for a while. I also hurt my shoulder about a yr ago throwing a toy to my dog. The. A few months ago my shoulder and upper arm starting hurt I also get alot of tingling and sharp pains in my hand and upper arm and cramping that feels like it goes into my chest. I had MRI of the neck, shoulder upper andlower back, and neck. Which showed bursitis in the let shoulder, the start of arthritis my my neck and a herniated disk with a slight tare in at l4 l5. I also noticed my arms feel heavy at times ans also get tired from typing blowdrying my hair ect. And now within the past week it has starting in the right arm. I am so scared I have 2 very young children. I am having so much pain in my arms that I can't sleep. I know I have really bad anxiety I cry all the time I'm extremely depressed and fustrated over the pain. I am to the point that I don't think in can deal with this much longer. I don't know if I have ALS I ask my neurologist last year and he laughed at me all he did was an exam and said it probably fibro and gave me antidepressants. I am so tired all the time and. Can barely take of the kidsy husband who is really understanding says we will find adoctir if it take 20 to figure out what is wrong . I am also getting this sensation were it feel like my body and muscles are shaking inside. And what really scares me is the tiredness and pain that is now in both arms.. Please if anyone can help me I would appreciate it. I'm sorry for the spelling and writing I'm not to good ant writing my feelings. I want know does ALS cause pain and cramping feelings like this tingling and burning? Please help

[jattd]

I also forgot to mention cold hands and feet, dizziness on and off cramping in my thumbs. And the pain also goes under my arm and arm pits. Extreme jaw clenching. Burning and tingling on the bottom of the foot and and burning sensations, and jaw twiches, and I get these sharp muscle pains in the chest. I also don't get much physical activity. I know this sounds like alot but I really maybe someone can help.

[jimercat]

jattd,

I am not a doctor, and don't know of one on this forum that specializes in Neurological symptoms. But, what you describe does not sound like ALS.

Your doctor mentioned Fibromyalgia. Have you pursued that avenue of thinking? Have you gone to a pain clinic for evaluation? There are other things besides antidepressants that can help with Fibromyalgia. Have you been to a Rheumatologist that specializes in Fibro or Rheumatoid Arthritis?

It sounds as if you are extremely anxious. If you have a disorder such as Fibro, anxiety only exacerbates the symptoms, sometimes to the point of panic (pains in the chest, etc).

Perhaps you should consider switching to a doc that specializes in pain management or rheumatology.

Again, this doesn't sound at all like ALS. I believe your pain is real, but sounds arthritic in nature. A pain clinic can help with injections to tender points to provide relief.

Good luck.

[wright]

Hello Jattd

I agree 100% with Jimercat: that isn't even close to being ALS. Fibromyalgia is certainly a possibility. I would suggest going to a specialist (e.g. rheumatologist) . . . and if that specialist can't determine what it is, then get referred to another.
Again, ALS should not be a concern at all; you simply have too many sensory symptoms.
Good luck and take care.

[olly]

i agree it could be fibromyalgia, i would see a reumatologist and get checked out, when i first got ill i saw one as it was suspected .
symptoms can be similar to umn desease in that you can have muscle spasms,cramps,clonus,weakness and fatigue also sensary symptoms even though its not neurological they think its a sensativity to pain in the cns.
there are blood tests that can confirm this.i had these blood tests and to check for inflamation but they were ok. they also check for sensative pressure points in the body.
here is a link to some info.

http://www.emedicine.com/pmr/topic47.htm

hope it helps, take care
caroline

[jattd]

thank you for your quick replies. What is scaring me is the pain and fatigue I am feel in now both arm which started in one. My arm is getting sore and tired just typing. Also the cramping. I have read lots of things that ALS can be painful and can start that way. I am very anxious I have been crying uncontrolably most today. My husband is working and I'm alone with the kids idont even have strenth to take care of them. I'm so tired of going to dr.s and them laughing and saying its nothing. I am in real physical pain its not nothing.

[olly]

i have posted a reply with some web info on fibromyalgia, all the symptoms you mentioned do fit this. my reply with info will be here soon it just needs to be checked by a moderator as it has a web link in.
please go see a rheumatologist. alot of the symptoms can be like those of umn desease even the jaw ones, but if your reflexes are not hyperactive or you have no balance problems or lmn symptoms it is probably fibromyalgia. they treat it at a pain clinic and by physio and meds.
doctors once did not recognise it as a real illness and people were told its all in there head, but it is now a recognised dibilitating illness.
let us know how you get on if you see a rheumatologist, also if you type in
fibromyalgia support groups there are plenty there.
take care
caroline

[crystalkk]

Jattd,

That's why we have this forum to vent. I have alot of the same symtoms, but I have alot of atrophy and weakness also.
My emg's are not dianostic of anything. Did you have an emg/ncv yet and what bloodwork have they done?
You should really see a rhemo it can be Fribro like the dr said. It can make you very tired its called fibrofog. It does effect your whole central nervous system but does not do any damage. Are you taking anything for the anxiety? Please google Fibromyalgia and you will see it fits your symtoms. 2 years with symtoms and no atrophy is a very good sign.....

[jimercat]

Fibromyalgia can cause such fatigue. And it can choose where it wants to hurt from one day to the next.

Hopefully Caroline's links will show up shortly re: Fibro.

One medication that may be helpful to you is Elavil. It is an antidepressant, but it is used at low doses for sleep in patients with Fibro. The way it has been explained to me is that Fibro patients do not get restorative sleep and therefore are in a constant cycle of pain and fatigue, as your body needs sleep to keep it fit. You may also want to try moist heat in areas that are giving you the most pain right now. The main thing you have to do is break the cycle to find relief. Trigger point injections, swimming and moist heat seem to help a lot.

Look for Carolines links and you will see that you probably really do have Fibro. And it is no joke.:(

[jattd]

I just feel nobody beleives me the shoulder pain got like about a few months ago it different then pain I have now and a few days ago. It started in the other hand I have not had an emg on my arm had one 3 yes ago when my back went out. I have normal blood work they said was normal and went a place that does biodemical horses they are checking other stuff cpk i think that's what its called. I have read ALS does cause that's in the should upper and armpit also fatigue in the arms am I wrong.

[jattd]

I go to a chiro and nothing is helping tried anti depressant which caused more anxiety. I also had 4 injection my back last yr with no relief

[jattd]

sorry but also I can't stop crying for about 2 mths now over everything. Also screening and yelling.

[jimercat]

On Monday, I would recommend you make an appointment with the best Rheumo you can find in Houston.

The weakness you are describing isn't the same as ALS weakness as far as I can tell. I am speaking to you as someone that is married to a person with ALS and as a person that has Fibromyalgia. Trust me, you can get help for the pain.

If you have young children then you will want to check out the arthritic connection and know that you may be slightly or somewhat unable to do some things with your kids(depending on pain level for the day), but you will be around for a long time.

Like I said in my earlier post, I'm not a doc, just speaking from my own experience.

Wish you luck and please let us know how you are doing after visiting a Rheumo!

[jattd]

I am not dropping things just feeling fatiuge in my both arm worse in the right they checked blood work a while back for rheumatoid and lymes and those things. How could a dr. They gave me litterly 5 min of his time diagnose me with anything. I have read about fibro its simular to alot of diff things. And the regular doc I saw said its a diagnose they give people because they can't figure out what is really wrong with or don't care.

[jattd]

I also read that ALS is diff for everyone. I just wish I could stop crying.

[olly]

if you are crying all the time and having mood swings you are suffering from depression and need help/meds this could be a symptom of fibromyalgia.
have you had neuro exam? were your reflexes ok? balance ok? no definate neurological weakness say in one limb? if these are all ok you can have some peace of mind.
fatigue is a basic symptom of 1.000's of treatable illnesses and is different to neurological weakness. please dont torture yourself and find a good rheumatologist, i am sure with propar health care from a specialist in this will really help you.
go to your doctor tomorrow and get a referal,let us know.
god bless
caroline

[jattd]

I was left ankle response was weaker then the right and so was the strenth in my left hand. That was a yr ago. It feels like the inside of my muscles shake and I get these sharp pains and spasms

[jattd]

Also muscle twitching in all part of the body.

[jattd]

can someone please give me more imput I'm at the end of my rope. I have 2 very young children and I'm scared to death.

[olly]

none of us are doctors here,we can only give you advice to the best of our knowledge.
you need to take control of this and go see your doctor,if you do get a referal to a rheumatologist there are tests to dx fibro myalgia, you can have muscle twitching with this. you need to calm down, also something for your anxiety/depression, it can not be good for your children if you are crying and over anxious and i do not mean any disrespect by this just deep concern for you. we each have our own health issues to deal with on this forum and can only try to support,comfort and if possible advise the best we can. i truly am worried about you with regards to your depression/anxiety,please talk to your husband and see your doctor together,you definatly need alot of support, and we are always here for that.
take good care
caroline
ps, the info/link came up, if you go back to page1 its there

[jattd]

I do totally agree with what you are saying i know I need help I have apt with a phych today and one with a neuro in 2weeks. I just dont understand why its so hard for anyone here to possibly beleive that i can have als. you sound like the docs chalking everything up to dpression and anxiety. maybe i did not explain my symptoms correct.

I started and muscle pain in one leg about 2 yrs about then it went to the other then came the fasculations then i started getting tingling in the hands then came the shoulder arm and under arm pain and then now over the past week and a half its starting in the other arm. i was told about a yr ago by a physical therapinst that i had lower muscle strenth in the lft hand and lower reflex in the lft ankle.

Maybe i am obsessing over this but im sure most people on here did the same thing and do when they are scared. I have tried anti depressents they numb me and make me have panik attacks.

I just want someone to understand because know in my home does they all think im invincible and knowone is.

[olly]

i do understand you and yes we all have been scared at sometime. none of us can say for definate whats wrong with you. anxiety/depression can be a symptom or cause but it can definatly make symptoms worse. see a rheumotologist first,they will tell you if they think it is more neurological. i do speak with experiance of this.
i began with muscle spasms in my legs 8yrs ago and firstly was sent to see a rheumatologist, had tests done all ok but 4mths after spasms started i developed neurological weakness in my left leg and foot drop. so i was sent to neurologist and my reflexes were hyper. the spasms are 24/7 and i have developed limb girdle muscle weakness and need aids to walk. i have now developed some chewing/speach problems due to jaw spasms/weakness. i have had every test done to rule out everything other than mnd. they even did serial mri's for a few years to rule out ms.
i still dont have a definate dx as yet but my neuro is suspecting pls, i did panic as some symptoms seem to be more lmn and worried about als, but my progression has been slow and i dont have any atrophy so as my neuro said its looking hopefull.
i just try to take things one day at a time and get on with life, and yes i do sometimes get depressed or anxious but try to get past this as it can make symptoms worse.
the pain etc is not all in your head, there is something wrong but als seems the less likely cause. talk to your husband and see your doctor,get your husband to go with you for support.
god bless
caroline

[jattd]

I'm so I am so scared of dying becuase I love my kids so much. I don't want them to grow up whithout a mother. The earlier of any apps are for next week I made one with a rhuematologist and one with a neurology m
I'm suppose to go away this weekend with one of my sons and I want to csncle because I'm so paralyzed with fear we are suppose to visit family

[olly]

we all have those fears, my son is 19 so he is old enough to understand my illness and helps me alot. i am glad you have made some appointments and hope they go well.
i know its easy to say but for now try not to worry and go on your trip to see your family with your son. as i said before with no disrespect but your children will be feeling your anxiety and deppression. you sound a very loving mum who wants the best for her children and you have understandable fears but for now remember they are just fears.
is your husband supportive with regards to your illness and emotional state? if this is personal sorry. you need someone close to you for emotional support who you can talk to but we are always here if you need that.
god bless
caroline

[lovelily]

So sorry for you fear/anxiety right now! I think it's normal to get slightly worried when you feel as if your body is going 'out of control.'


I had 2 abnormal muscle biopsies, because of muscle weakness. One showed a myopathy, the other denervation.


You are taking the right steps towards finding out what is wrong. It takes time.

Maybe the neuropsychiatrist will be able to help with the anxiety. Anxiety does tend to make things worse, but I do believe anxiety plays a role in us, when we get ill. I think it's the body telling us there's something wrong.

I was in the hospital when a psychiatrist was sent to evaluate me before my muscle biopsy....long story, but he turned out to be the best thing that ever happened to me. He wasn't there to judge me, just help. He did, and still does.

The best to you as you search for your diagnoses. God bless you!

[jattd]

yes my husband is very supportive. But he doesn't know what to do to make it better. I'm so tired mentally a physically drained. In tired of going to the er. I just want to be ok. I need to be ok my little son has learning delays and might possibly be autistic. I'm so scared for him if I'm not here. Thank you so much for your support I know you have your cross to bare.

[northerngirl]

Hey you!
I so totally under stand I lost 10 pounds over Christmas thinking like you!
we can tell you until we are blue in the face it does not sound like ALS but your mind will not listen until 1) you feel better, 2) some one (Dr.) nails it for you.
Mom has a great slogan FEAR: False evidence appearing real. When I went for all my test I said to my Doc, it could just be fibro, hoping it was that simple, but she said not probable because fibro is an inflammation and it would have showed something up in my bla bla bla test, to keep your sanity in the waiting game try and give your self 20 minute of vigorous exercise ever day, (skip rope. running etc) it will help release endorphins that will help you feel better, really! think of it this was "if I have something bad I will get my body in great fighting shape to battle it!" Now that was easy to say but I know when you feel like crap it is hard to do but say "I am going to do this for me" and when you feel better (which you will) you will have more happiness to share.
Please don't think these folks are dismissing your symptoms, they are just not saying Oh my Gosh, I am sorry that does not sound good" Take it as a positive, and that you are going to be around for a long long time with your kids!:wink:

[seeblueeyes1108]

Hey Katy,
My name is Jennifer and I am 36 with 2 children and just found out in August 2007 that I had ALS. I have to say I read about you, and all those things had happened to me. I was a spinning instructor and sprained my left ankle last July 2006 and it since then has progressed into the left leg all the way to the hip, and in April 2007 it was starting to go to my right leg. After being tested for evrything locally, my doctor told me I should go to the Mayo Clinic. I was a lab rat for 9 days, went under all kinds of tests, to be told on my last day there that I had ALS. I am now confined to a wheelchair and it is in both legs fully. I am unable to move my legs. My upper body has been fine, until under severe stress and major depression ,it is now making my left arm weak. I have physical therapy 3x a week and occupational therapy 3x a week as well. The more and more I research the more I do not understand why bad things happen to good people? I would suggest going to the Mayo clinic for tests. I hope you get better news than when I went. No matter who you are, this disease is very overwhelming, and life altering. No matter what, stay strong. Please feel free to message meif you need to talk. My name is Jennifer.

[CindyM]

Hi Jennifer. I am sorry you have ALS and sorryier still that it took 9 days of beign a lab rat before they could say what was happening. You found a good spot on the internet, though. Lots of caring and kind-hearted folks to share this journey with.

Not everyone on the "net" is kind, though. And everyone can see what is posted here. If you want me to edit out your email address just give the word. You might be getting a lot of spam by now...Cindy

[MtPockets]

Hi Jennifer,
Welcome to the forum. Sorry for the reason you had to look us up. Please feel free to jump in with any questions you may have. The people here are like one big extended family who help one another along this bumpy road we all face.

[olly]

hi, i just wanted to wish you all the best with your appointment this week. i hope you are feeling a bit more calm and better than you did last week. let me know how you get on. did you go away for the weekend? i hope you are ok.
god bless
caroline

[sironside]

I cry every day too. I'm only 22 and have these horrible symptoms but no pain. I'm losing tons of weight (I'm skinny to begin with) because of nausea lately and my husband is very unsupportive by trying to give me a "reality check" every day. I'm so sick of crying, I think that's the worst with ALS is that it can take a while until they rule everything out and finally diagnose you, and by that time you lose precious time. I'm really scared and can use all the support I can get.... I'll try and support you and others who are going through this "in between" phase of having symptoms and not knowing what it is.

[olly]

i left you a message last week.
did you go to your rheumatologist appointment? what did they say? when is your neurologist appointment?
i hope you are calmer and feeling a bit better. hang in there.
take care
caroline:-D

[jattd]

hi and thanks for checking in. im doing really bad. the dr. did an upper nvc and emg which where normal and i go back friday for the bottom. my legs hurt so bad and they wont stop twitching. i dont think i can go on anymore the pain and fear is killing me and dont want to live like this anymore. i cant let my kids and husband watch me suffer. i cant go on like this anymore.

[MtPockets]

I know how you feel when these symptoms first start, but please talk to us here and let us help you work your way through this time in your life. It is difficult but not impossible. We have already walked a mile in your shoes so to speak. Only problem I no longer walk, and can't wear shoes due to leg and feet swelling.

I was Dx with ALS on May 11, 2006 and now I am in a wheelchair, but I still enjoy life. My life did not end, but actually got better because my focus has changed.

It takes time to adjust to the feeling you are experiencing. Don't give up HOPE. You are in my prayers.

Just one of the many, who cares.

[jattd]

Thank you Al I have read many of your posts and you sound very informative caring and brave. I feel very guilty posting because I don't even know if this what i have. the fear of this and the possibility of leaving my children without a mother is taking over my life i dont want to live this way and dont think I can take it much longer. please forgive me. im an emotional wreck. I want to know does a normal emg nvc confirm yot don't have als they did my upper half now im waiting for the bottom1

[happy]

jattd,

My heart goes out to you. I just want to encourage you. You will be okay. Having a negative emg is a good sign. That is what I was told. I think the main thing here is, and I know it is hard, is try to get a handle on your fear. It is not easy but you must. The crippling fear only makes your symptoms worse. Try as hard as you can to make today a good day. Even if you are feeling badly be with your kids today. Take them to the park or something. Do stuff today to get your mind off of what you are going through. Watch funny movies, go outside, anything that you like to do. I know when my symptoms began it drove me to all kinds of dark places. No matter what you have today. Look around and instead of focusing on all that is wrong try to look at what is good. I wish I had done this in the begining. My fear was like you so crippling that I lost 2 entire months to the couch and this computer. Crying, reeling in my mind about my ultimate death, and how unfair this all was. I can tell you it made me worse. I actually had to come to terms with the worse case. There are many people on this forum that you can learn from. But I encourage you today try not to stay on the computer. Be happy, you can do it. I will pray for you.

Robin

Robin

[jattd]

can i ask you what your symtoms are. i have pain and twiching in legs more in the right and pains and twitching in the arms shoulders and neck and sometimes face the said my nerves in my arms were great nvc, the dr said there was no fireing at all i go tommorow for the bottom. yet i have all this twitching burning sharp pain. I do not under it feels like my muscles are shaking inside. and burning i had major surgery in dec ectopic preg an have been pretty much inactive since.

[MtPockets]

Thanks Robin,
You said it so much better than I could.

jattd,
If you have read many of my posts; I know that you understand where I get my strength and hope to go on fighting this terrible disease. My faith in my God and Jesus Christ is my life. My family is also very important to me. I have to be there for them during this time. They are grieving the future loss of their father and grandpa and they see the changes day to day. I try to help them understand that I am living each day one at a time.

I have 4 children and 15 Grandchildren. I have two teenage Grandchildren living with me now, because they have no place to go. Each and every day I wake to thank God that I have them in my life. Why? They are teenagers! That should say it all. They have so many questions about life and I give them the opportunity to talk with me about ANYTHING, at anytime.

Please focus on one day at a time. That is what we do and we try to live it to the fullest. We do not spend our time and thoughts on tomorrow, or next month. Each and every day you can be a blessing to your children. Please don't waste even one day, your children need for you to be strong. I know it is hard now, but time will help you focus on other things if you will let it. Please understand each of us has been right where you are right now, and we overcame those feelings by choosing life in whatever form it may be.

How many children do you have and what are their ages. Tell us about them.

Just a small suggestion that I have tried, Put a piece of paper on the refrigerator and each day look for and write one thing that was beautiful, special, loving, etc., about that day. After about a week you will find yourself looking for those special things in your life each and every day.

Even as I write this to you, a beautiful Cardinal just landed on my bird feeders just about 6 feet from me outside of my window. How beautiful they are and so great that they brighten my day by chirping and showing their beautiful colors.

Yesterday the special thing for me was when a beautiful humming bird flew up in my face on the back porch and just looked at me as if he were saying, Wow look at me, how do you like these blue fluorescent colors? Little things like that can turn a day spent in terrible pain in my wheelchair into the most wonderful day. Little things, all put together, roses blooming, a flock of birds flew over my head yesterday in a V formation, so many wonders to live to see and enjoy.

How can I focus on things like this when yesterday I was in the worse pain of the year? I have lower spinal damage due to an airplane accident 18 years ago that causes me to have chronic low back pain and sciatic pain. Yes, I have lived with this pain for 18 years. I spend many night with no sleep, sometimes even cry when it is too much to bear it seems. Narcotics do not help with the pain as I am allergic to most of them.

How do I continue then you may ask? I made a choice. That is right you can chose to be miserable or to be happy. It is your choice what you LET your mind spend time thinking about. I chose to be happy regardless of what my body is telling me with symptoms.

I know this is not something you can grasp right away, but please understand, many, many of us have chosen to look on the good things we have left in our lives and not to spend all our time pondering the worse. Only you can control what you Chose to think about. Get your mind busy with things that are good thoughts. This scripture comes to mind right now:

Philippians 4:8 "Finally, brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things."

Give it time and things will get better, do not give up.

God loves you and so do we.

Please hang in there for your children's sake and ours.

[olly]

listen to capt al's words of wisdom, and what beautifull wisdom it is i almost cried.
i have had severe pain from muscle spasms, had them 24/7 for 8yrs and twitchings but even though i can feel the pain and it limits my mobility along with the muscle weakness i mentally block it out by keeping my mind occupied on other things. i admit if i have a major bad day its not that easy, but if you dwell on your pain/illness it can make it feel worse. it is a vicious cycle and takes time . life is too short take al's advice and try not to focus too much on your illness and use your energy/time for your kids.
did you go to the rheumatologist? neurologist? you did not say, they will find the answer eventually as to what is wrong but it takes time.
god bless
caroline:-D

[wright]

Hello jattd

Burning pain is "good" . . . so to speak: that points to neuropathic pain, which is not part of ALS. Neuropathic pain is caused by sensory nerves . . . and not motor nerves (remember, ALS affects motor nerves). The pain associated with ALS is muscle pain (cramps and spasms for example) and joint pain. Living with pain is no fun ordeal . . . BUT the pain you are experiencing is not ALS pain.
Take care and keep us posted.

[happy]

jattd

My symptoms started with neck and shoulder pain. that radiated down my left arm..unbearable. Burning tingling, numbness. Then over the months, 7 months to be exact, I began to have atrophy in my left hand and arm I could not button things, zip or use my hand for fine motor skills. I was slurring speech, severe fatigue, aching all over my body, shacking on the inside, clenched jaw, shortness of breath, my walk was affected in that I had to plop feet rather than set my foot down.
Also a biggie for me ....I could not think straight. Eyesight was weird too. All of my symptoms, the latter, would come and go. Some days worse than others. Depression too for me was a biggie. I am a recovering alcoholic and because of the fear I began to drink again, not good! I had no support at home,,,my family thought I was making it all up from reading the internet. It was horrible. But...beacuse of the influences on this forum...I made a decision that I would not give in to horrible depression.

I checked myself in to rehab with all my symptoms, and tried to accept my fate the best way I could, for my kids sake. It is really hard to be sick and to think positivily...but you have to. I listened to what Wright said and told my neuro about Parsonage Turner syndrom and that is what is pending now for me. There is no cure, but it is not terminal.

I still have all my symptoms but I work on my attitude daily. I am working on learning to live with my new body. I am not the same person able to do the things I used to do, it's hard. But, I try to cope the best I can. I do not think you have als based on what you have described. Remember, stress and focusing on your body will only make it worse. Not knowing is the hardest part..hang in there. Listen to Captian Al he speaks from a ton of experience so do the others on this site...take what all these friends have to say to heart, this is how you will get to the next step sucessfully I promise.

Robin

[MtPockets]

Just wanted to say Robin, I am so proud of you. You go girl.

[jattd]

I do have terrible joint pain in my shoulder back ribs and knees also my muscles hurt to the touch And achea all the time. This is not normal I don't really have weakness my arms and legs do get very tired though. Does this good to you I doubt it. And does a normal emg nvc mean you don't have als every freakin part of my body twitches. Please help me I'm on the verge of just ending it all now so I don't have to suffer and put my family through this

[wright]

Having muscle aches and pains . . . and having joint pain . . . does not mean you have ALS. All I was saying, was those are associated with ALS . . . that is all. Muscle and joint pain is associated with many, many, many, many things. You said that you have burning pain, which is neuropathic . . . which again . . . is not associated with ALS. If you have that, then there is a differential diagnosis . . . e.g. fibromyalgia, CIDP, etc., which are treatable. Please try to relax and focus on the positive things in your life. In time, you will be fine and will be able to enjoy your life again.

[jattd]

I respect your insight and it seems you know a lot but whst msked it so hsrd for you to believe that this I'd a possability. I have read post on heart about als people with tigling and burning pain and wide spread muscle twitching. Also can you answer my question about a normal emg and nvc meaning you can't have als. Please explain to me why its so hard for anyone including my family to believe me. I want to live and this is killing me my dam shoulder hurts just from typing this. I'm a young mother with two beautiful children and a wonderful husband I need to be here. I can't take going to dr after dr I can't live like this anymore. I'm actually scared for my kids to be home for the summer I can barely take cre ofthem now my 3 year old who is in a special school he has learning delays and autistic characteristics is home by 11:30 and my other son is in kindergarten. In another moth they will both be home all day and I have no family or friends here in kay my closest family is 1,642 miles away. I'm so scared of this I just feel they are better off without me. I'm sorry I don't know what else to say I am rambling out of fear.

[crystalkk]

jattd,

We all do believe how you feel.... I am undx, and i am declining rapidly. I have alot of atrophy and can barely walk, but because my emg's are not dianostic of anything they can only say they don't know what is wrong with me.
I am scared to death as well, I have 2 children ages 4 & 7 and don't have alot of help either. My husband works on the weekends as well. Did you see a rhematoligist yet it sounds like it could be fibromyalgia. I believe you said you had brusitis in your shoulder that is very painful and needs rest and treatment to feel better. MY mother-in-law has it as well in her shoulder
and when she has a flare-up she can't do a thing.

Are you taking anything for anxiety? Your anxiety can make things feel 10 times worse......
Please take care of yourself , the way you feel will reflex upon your children.

[wright]

I can't sit here with 100% confidence and tell you that you don't have ALS . . . that is something your neuro has to do. However, given your history and symptoms, it just doesn't fit. You also said you had a clean emg: that points away from ALS, especially if you have had symptoms for nearly two years; something would show-up on the emg in that time frame.
As far as those PALS with burning pain: my guess is that those symptoms occurred later on in the course of their disease . . . which is a possibility due to loss of muscle mass and edema, which can irritate sensory nerves and cause that type of pain . . . but it is a very rare symptom and is secondary to the etiology of ALS . . . not primary.
I hope that helps calm your fears a bit.

[jimercat]

The reason it is hard for anyone to believe you have ALS is because your EMG came back clean. You say your Nerve Conduction also came back clean---this means your physical nerves are NOT the problem.

Look, you need to take the advice from people that have tried to help you here. I, for one, know that you can have the pain you describe with Fibromyalgia. It is not clear in your posts if you ever sought out a specialist in Fibro for an exam. I can tell you that in my own experience, Fibro can drain you of energy, which is why lots of people with Fibro are dxd with Chronic Fatigue Syndrome.

From Wikipedia re- CFS:

* Neurological/cognitive manifestations: Common occurrences include confusion, forgetfulness, mental fatigue/brain fog, impairment of concentration and short-term memory consolidation, disorientation, difficulty with information processing, categorizing and word retrieval, and perceptual and sensory disturbances (e.g. spatial instability and disorientation and inability to focus vision), ataxia (unsteady and clumsy motion of the limbs or torso), muscle weakness and "twitches". There may also be cognitive or sensory overload (e.g. photophobia and hypersensitivity to noise and/or emotional overload, which may lead to "crash" periods and/or anxiety). A review of research relating to the neuropsychological functioning in CFS was published in 2001 and found that slowed processing speed, impaired working memory and poor learning of information are the most prominent features of cognitive dysfunctioning in patients with CFS, which couldn't be accounted solely by the severity of the depression and anxiety.[31]

From Wikipedia re - Fibro:

The defining symptoms of fibromyalgia are chronic, widespread pain and tenderness to light touch. There is also typically moderate to severe fatigue. Those affected may also experience heightened sensitivity of the skin (also called allodynia), tingling of the skin (often needle-like), achiness in the muscle tissues, prolonged muscle spasms, weakness in the limbs, and nerve pain.


From Wikipedia re - MPS (associated with the above):

Myofascial Pain Syndrome (or MPS) is a term used to describe one of the conditions characterized by chronic pain. It is associated with and caused by "trigger points" (TrPs), sensitive and painful areas between the muscle and fascia. Simons has visibly identified and documented these contraction knots through electromyographic imaging, ultrasound, and biopsy.[citation needed] The symptoms can range from referred pain through myofascial trigger points to specific pains in other areas of the body.

I really, really wish you would check this possibility out. It is not fun to live with this disorder, but it is nothing compared to what you have convinced yourself you have. Do not visit a doctor that does not specialize in Fibro, as they will be ignorant and tell you once again that it is all in your head. And by the way, Fibro usually hits women more than men, thus the "all lin your head" thing! Why would you not want to check this angle out???

[jattd]

The bursitis I have. Mild in the left arm now my right arm and shoulder are killing me it feels like the bone and muscle hurt and they feel fatigued. I really believe fibro is something drs say when theyvare ata loss. Also this has not been going on for 2 yrs except for the back prolems everything a year and the right arm started about a month ago I'm so exhausted I can't barley make it through the day also I only had the upper emg and nvc I have an appt tommorow for the bottom and I'm scared to death I almost don't w,t to go. My husband wants to put me into a hospitial to get help but have knowone to wqatch the kids and no money I am so bad I could even remember to pay my car payment and now I'm really screwed. How could someone so afraid of dying not want go on. wonder

[jimercat]

You are amazing. Fibro may be something some docs dx when they know of nothing else, but if you would take the time to investigate, there are specific criteria for dx and it is not just a "I think you have fibro thing." LOOK IT UP!!! You obviously looked up ALS!

I've given you all the time I can expend. I truly hope you will find peace.

[happy]

Thanks Capt AL, that means a lot coming from you!

[jattd]

I'm sorry I did not mean to take up all your time. I am just very scared. I did go to a rheumatologist ho gave me info on fibro and did lab work I have to go back in 2 weeks. I hope and pray you are all right. I'm sorry if I upset you in anyway I know you are only trying to help and I appreciate everyones input more then you know. Thank you

[MtPockets]

Jattd,
My wife has fibromyalgia and has all the symptoms that you are describing. One thing she was told by the Rheumatalogist, was to stay out of sunlight. For some reason it seems to cause flare ups. I did not know if anyone else had experienced this?

Most of all it seems you need some anxiety medication to help you over this time in your life until you can come to grips with what is going on with your body. Do not believe the worse, hope for the best. But please get some help for the sake of your children. The last thing they need to have to live with is their mother dying because she could not face her fears.

I say this out of love and concern for you and your family. I am not judging you, only exploring the consequences of your possible actions, if you give up.

http://i160.photobucket.com/albums/t172/ShakeyMarble/Christian/Angels.gif

[Lorie]

Capt. Al and CJ are right. Start with trying an anxiety Medication so you can relax and try to focus on getting your self better. So you can concentrate on taking the right path on getting the proper medical help. There is a new drug for Fibro called LYRICA. You need to be there for your children. When I was Dx with Meniere's disease (ear) in 1992 after the shingles virus in my right ear. And four ear surgeries. I was left with Tinnitus. My sound in my ears is not a ringing. It is more like a jet plane. I am clinically deaf in my right ear. Ins. dont cover hearing aids. In Oct 2004, I convinced myself that I could not live that way. and I was going to commit suicide. I focused on my daughter and husband and got a grip. I have not accepted it. I have adjusted living with it. I can here the sound as I type this to you. There is appropriate help for you. Please get on an anxiety medication. and depression medications you must take as a therapy everyday to be affective. In 1992, I went in to a deep depression. It was a very dark place. I don't ever want to go there again. So please seek help. We are here for you. This is the most caring group of people. Sometimes we have to give a little push so people will get the
help they need. Just think if you can be treated and live as normal as possible. That would be a lot better than having ALS. With no current Cure.

We Care,

Lorie

[vtway]

I am new to this forum and am not computer literate enough to know my way around. I would very much like to get in touch with this member. I am the facilitator for a Fibromyalgia and Chronic Pain support group in Katy Texas. I would love the opportunity to get in touch with her and offer any help that I can - but I can't figure out how to do it! If someone could please get in touch with me and let me know how to make contact. I'm not sure if it is allowed, but my email address is btway1@comcast.net. This woman is in serious need of a buddy and i would like to be that person. Please jttd, if you see this, or if anyone can help me figure out what to do to get to her, please let me know.
Much thanks-Vickie T

[patricia1]

I can't sit here with 100% confidence and tell you that you don't have ALS . . . that is something your neuro has to do. However, given your history and symptoms, it just doesn't fit. You also said you had a clean emg: that points away from ALS, especially if you have had symptoms for nearly two years; something would show-up on the emg in that time frame.
As far as those PALS with burning pain: my guess is that those symptoms occurred later on in the course of their disease . . . which is a possibility due to loss of muscle mass and edema, which can irritate sensory nerves and cause that type of pain . . . but it is a very rare symptom and is secondary to the etiology of ALS . . . not primary.
I hope that helps calm your fears a bit.

I had neg Emgs for three years and I had slurred speech ,so that is incorrect information.Thats why it took 5 years and 6 neuros before I was Dx. Emg cannot rule out ALS.There is no test for ALS its pocess of elimination!

[wright]

Her symptoms are indicative of lower motor symptoms, which should show-up on an EMG, which is why it simply didn't make sense.
Weren't your initial symptoms upper motor neuron symptoms, Pat? If they were, the EMG would most certainly be clean.

[olly]

i have not heard from jattd for quite a while now and hope she is ok. we tried to help her the best way we could. if you send her a private message it should go through to her email so she will get it without logging onto the forum. i think i will send her one anyway just to see if shes ok.
take care
caroline:-D