I accidently found this website and I am scared

[happy]

I went into the hospital on Thurs. because I was feeling dizzy and legs were heavy, slurred speech. I thought I could be having a stroke. When the nurse took my blood pressure it was 147/87 very high for me I am athletic and usually run 110/60. I have had shortness of breath for several days. The clincher for me was that the doctor said after giving me a MRI of spine because of muscle wasting in left hand between thumb and index finger that I have spondilosis of the spine. And that my symptoms were caused because of spinal cord compression. But after reading all of these symptoms I am really afraid. I am 48 and have 5 children and two grandchildren. I see the neruo surgeon tomorrow. I am on a leave of absence for now I dont know what I will do. Oh I have also had the heavy head and severe fatigue. It's so hard to explain the symptoms to anyone. I think my own children think it's all in my head. I am not ready to die.
I need to change my attitude and find out what God has for me. Please pray for me. I have read all your posts I admire your courage, sorry for the long post.

May God have mercy on us all
Robin

[ccox]

Robin, I'm sorry for your health troubles. I can assure you that you don't have ALS. Symptoms don't appear suddenly. They come on very slowly.
I wish you luck in a quick diagnosis of your ill health. I'm sure it's very frightening.

[CindyM]

Hello Robin. I hope we can help relieve some of your concerns. ALS is so rare and your symptoms can be caused by so many other things so maybe it is not time to worry yet.

If your local docs do not uncover the reason for your poor health, you might ask for a referral to a major neurology clinic at one of the teaching hospitals, but if your experience is anything like mine or several others it might take a long time to find out what is going on. That's the bad news: the good news (according to one of my Docs, anyway) is the longer it takes to find out what is wrong, the less chance it is something incurable or untreatable. Cindy

[happy]

I guess I should have clarified that I have been having muscle wasting and atrophy in my hand since June 07. I still was able to go to the gym and lead a regular life, I just did not have the strength or normal grip in my hand. I t wasn't until recently that I began to have the symptoms of hand numbness again (a different sort of feeling) I can feel the strain of trying to use it and it feels weird. The "off balance" thing started about the first of Feb. along with it is extreme fatigue and shortness of breath slurred speach at times stuttering, loss of memory,inability to put thoughts together, some twitching in my left side and in my hand , not regularly though.
The hardest thing is I am trying to tell people and no one takes me seriously in my family. They think because I am online looking up my exact symptoms that I am working myself in a sickness. I too have noticed that my skin is thinner and has lost its elasticity. Menopause? this has been going on before the onset of symptoms. I am not able to see the neuro surgeon until the 22 I talked to my family Dr. I have an appt. tomorrow...I am so discouraged no one is taking me seriously...am I crazy? I try to do things normally but I cant. I feel unbalanced and sick. Yet the symptoms come and go one moment I can be talking normally then the next hour I am stuttering and slurring slightly.
How can I get though what seems like an impossible time and be normal? My husband and children believe I am making a bigger deal out of my symptoms than I should. I just dont feel right I am afraid to walk alone that I might fall somewhere and I dont have the energy to explain. Am I crazy what should i do? What questions should I ask my dr. tomorrow. She mentioned on the phone that I had a Ct brain and it was normal, I had an MRI c spine and that revealed a very slight cord compression. But she said it would cause these other symptoms. Im baffled.
Please help.
Robin

[happy]

I said the dr said the MRI cspine would cause these problems what I meant to say was it would not cause these symptoms. :confused:

[ccox]

Sorry Robin, I didn't understand in your first post that some of your symptoms were ongoing and not sudden.
I found with my mom (dx'd June 07) that it was helpful for her to write down EVERYTHING that was different or difficult and take it to her neurologist. Then he had a full picture of what was going on with her on a day to day basis.
I'm not saying you have ALS, I'm just saying that sometimes doctors don't understand if they are only getting parts of a puzzle. For instance, my mom didn't think it was worth mentioning that she could no longer button her pants or hold a pen.
Your thoughts and fears are legitimate. Keep at it until you get a definitive diagnosis of something. Try really hard not to go "worst case scenario". For example, your hand weakness could simply be carpal tunnel syndrome. Your extremely high blood pressure might have been stress induced because of fear of a stroke.
Keep in touch here and let us know how things play out. Best wishes for a diagnosis of something other than ALS!

[siuska]

i had a severe onset like yours...i thought i had a stroke...i still have problems four months later and no closer to a diagnosis...i did have a pituitary tumor and almost no cortisol in me when i ended up in the hospital... i have to tell you, i get bad headaches and dizziness and fatigue and stagger like a drunk sometimes, so, if they haven't checked ALL of your hormone levels at the RIGHT times...i would definitely investigate this...i also have atrophy...the EMG done states that it is peripheral neuropathy...i would suggest getting an EMG/NCV. You could have a whole combination of things going on...isn't menopause great???

[happy]

Thank you for your posts. I do agree that writing things down daily is a good idea. So many times when i get a symptom and someone asks me what is going on I forget about certain things that were rather important. Also, I am afraid this is going to take awhile to get any answers. Here in the Sacramento area I have no idea where to start with a neurologist or anything. It seems no one seems to take my symptoms seriously.
Yes, all of this and menopause! It's great to be me,:oops: (that's me having a hot flash!)
Well, it's late and I need to try to get some sleep. Yea, I had a little body ache today it was kinda weird stiff and achey. You all have a good nite's sleep. I'll be back tomorrow.

[happy]

Well, I went to the dr today( GP )and she said that everything was normal. My blood work was fine my reflex's were good not indicitive of neuro damage and that my ct should have shown if something was wrong. I asked her to explain to me then why my hand between thumb and forefinger is basically gone and not usable for small detailed things. She suggested that I go to PT. I also asked about the slurring and the feeling like i am going to trip the small muscle twitching that goes on on that side of my body. She attribute it to stress. I am so confused. The symptoms that I am having are so subtle that I seem to be the only one who notices them and yet they are so huge! Believe me I DO NO WANT this ALS or MND or any thing like it and I think it is the saddest of all dieases. Why should someone have to have all these symptoms and not at least get the peace of mind in knowing what is wrong! God, it is so terrible! My arm has been feeling achy and stiff. My body has been sore and stiff. I have been having mild twitching in the same side of my body. I still am stuttering and off balanc eoccansionaly. Not my usual self. I need some answers or some questions that I can answer that will help me. I am so scared. I need to know. I still have an appt. with the nero surgeon on the 22nd of this month. I am afraid of getting my hopes up for any answer that might give me some hope. I dont want to go on like this just getting worse and worse and then not able to move, then oh, yea, you have als.
Quickly before I go should I get a rather large life insurance policy to care for my family while I am still somewhat healthy and the medical profession is proclaiming I am fine? Just a question in case anyone would care to answer.
Thanks
Robin

[happy]

fHello Everyone,

I guess in the beginning I should have introduced myself in a more proper manner. My name is Robin , I am 48 years old and I am married by a thread and have 5 beautiful children. I have not been diagonised but AI hope you all dont mind me being here in my frantic state. I am desparate for answers and you all have given me more info than any dr who just blows my symptoms off to stress and nothing wrong when I know this is not true something is wrong i just dont know what yet...so i am tring to find the answers i need please bear with me.
I originally had an onset of neck and arm pain in June. The pain was so bad there was no drug that could touch it. Shortly after that I began to see my with in weeks my arm from lack of use began to wast away At first I thought it was due to some sort of cervical injury,My son had walked on my back and the next day i could not move. my arm ached for months. The pain went away after several weeks but the atrophy in my hand continued. It did not prevent me from going to the gym even though it ached off and on I pursued determined to regaindn the strenght I had lost I regained a small amount but it was not normal my energy level was great. However I could not use my arm the way i used to it had become unusable. Mainly my left hand. I compensated for it buy using shoulder muscles to lift weights and try to build the muscle back up. My hand begin to atrophy, slowly now it is to the point where if you look at it from the palm angle there is no muscle originally thenar area between the thumb and the index finger all dexterity is gone. These new onsets began about three weeks ago. I had a sudden onset of severe fatigue, and a slight twing of pain in the bone in the ulna not being able to go to the gym where previously I was going daily doing strenuous exercise. Now I can barely make it aup a flight of stairs.I went to the gym just to see iff i could do a cycling class and noticed that I was sweating and that my legs became very wabbley Recently I have had twitching on the side of the arm that is atrophy. I began to notice that my jaw was d and hard to formulate words, even to the point of slurring. I also notice that my tounge when i stick it out slightly jump around and flutters uncontroablly I stutter sometimes uncontrollably. And find it difficult to begin a word sentence. Its there I just cant spit it out and sometimes it s there and then its not.My walk is still okay except that it feels like i have to pick up the foot from the knee and plop it down .
My heart and breathing have become more labored and it seems as if my body is achy. I have noticed some stomace pains in the upper part of my tummy above the naval. A crampy feeling not so to having to go potty that is not a problem. Sore joints at the knees too. I feel like I want to cry all the time.
My reflexes are good in both the legs and arms my spine feels stiff too. Not alot of atrophy in the rest of my arm at least not alot to anyone else but me but definitely;y in the palm, If I look at the palm it is as if there is a cave in the center. My arm burns pins and needles and is unable to function or grasp things normally. I do not have bad pain but sometimes it just feels like a generalized body acke. I had a twitch so bad not pain ful bad but came on so strong that it alarmed me. That's another thing I am far more sensitive to loud noises and I jar to sudden or loud noices.
The hardest thing for me Is the lack of support from my family. They are so mean. They just tell me every day to stop talking about it. I need to talk about it I am scared to death. My doctor says everything is fine my reflexes were good my blood work fine ct fine mri c-spine fine except cervical spondyilosis. I did notice that the reflexes in the my left leg same one of the arm is atrophied the reflexes there were almost super alive. Kinda like Zen said he could kick the dog over the fence.
How do i not get mean when my family ignores my need for some time of communication and supportive love... I feel so alone. I dedicated my 21 years to my marriage serving and taking care of their every whim and now I need them and they are blowing me off calling me a martyar I feel betrayed I am so scared and broken hearted all at once.
Please advise me. If I am diagnosed with als I think I will need to go and be alone I will need all the positive support I can get to not become bitter, even now while I am waiting the scariest time of my life.
Thank you for letting me ramble. I am really trying to think positive but I am failing. I will try harder tomorrow.
Robin
My email meohsohappy@yahoo.com
This email name was before I started to get sick maybe I will be happy again

[CindyM]

bitter, even now while I am waiting the scariest time of my life.


It gets easier with time, Robin, regardless of what they find, Even if they do not find anything! :) Cindy

[crystalkk]

robin,

Did you go to the nuero surgeon yet about the mri of the spine? Get his opinion, he probably will do a full nuero exam on you.
The atrophy in your hand can becoming from it.....
Alot of your other symtoms can be anxiety or stress related, are you taking anything for anxiety?
Please try and think positive, if it is coming from your spine it can be fixed with surgery.
Don't jump to ALS so fast, so much has to be ruled out first.

[happy]

Thank you for answering my post:
I know that I am very nervous and maybe jumping the gun. I am trying not to. I just hate the wait while I am experiencing these horrible symptoms.
My neuro appt is on the 22nd of this month. And just for the record I had a couple of beers last night and i seemed alot better, I am taking klonopin for my anxiety and it seems to be helping however I am still short of breathing and extremely tired. I have never felt this tired in my life. WEIRD.
Thanks so much for your posts to me I feel so alone at home its good to have someone to talk to.

Sincerely.
Robin

[happy]

Hi everyone,
Well today I actually had a good day, accomplishments wise. I cleaned my house and only slept for about 2 hours. I did not feel the pain I have been feeling and I did not trip or feel strange in my legs! I did have just a tad bit of slurring but not hardly noticeable even to me. My eneregy level was about the only thing that I can say was a pain in the butt Maybe I am getting better. Small bit of acheing in my arm, short of breath a bit but I did have some strenght in my arm.
Maybe my prayers are working. I used to complain about having a very stressfull job working in the ER but if everything is okay with me I will never complain again, I promise!And more importantly, I have donated many weeks voleentering my time to help organazations like I was the chair here in sacramento for Walk for Hope. I spent 3 weeks in Houston serving the Katrina evacuees. And I have spent countless hours preparing meals and feeding the homeless. But now having been so close to the pain and the agony that I have read in these posts I will spent my time figuring out a way to bring awareness to this very isolated diease. I just pray that my symptoms gradually disappear.
Thanks for reading
Robin

[happy]

I have had these unexplainable symptoms for 3 weeks now. Some days they are worse than others. I am alone, even on this website. I feel a deep depression setting in. I want to cry all the time. I have no where else to go not drs not specialists, just my self but my exaustion keeps me isolated.
Thanks for the encouragement.

[happy]

Hi all
I hope you all had a great saturday.
It seems kinda weird but today almost all of my symptoms were gone. I did not have the slurring, the tripping, the aching in my arm. Nothing! The only thing that was mildly annoying was not knowing what in the heck is going on. My hand is still atrophyed and I have limited use as far as dexterity a few twitches, but my legs and my feet even felt good I felt like i could walk without lifting my knee conscienely. I had way more energy than i have had in 2 weeks. I went shopping and bought myself some clothes and even contemplated going to the gym. But then I thought I better not push my luck. I knew the gym would be only for the sheer purspose of riding the bike. I in no way felt as if I could push myself the way I used to but just the thought of going made me feel good. Maybe tomorrow.
Question: is this normal with als? Does it have remission times or is that only MS? I had investigated MS at the begining but some of the symptoms did not line up to what i had. ie hand wasting (thenar muscle) heat making symptoms worst. reflexes not present. I dont know this is all so new to me. Any suggestions would be GREATLY APPRECIATED. Was it the beer that helped me and my nervous system? :mrgreen:
I hope you area all having a good day. In spite of it all the weather here in CA is beautiful it is spring like enough to make any one happy.

Prayers and wishes for your happy outlook one day at a time.
Robin

[wright]

I just private messaged you, so please check. The symptoms that you had that started all of this for you, were most definitely real. I do think that your worry, anxiety and loss of sleep probably contributed to your later symptoms (fatigue, slurred speach, etc.). Your symptoms did start suddenly and are classic for something called: Parsonage-Turner syndrome (also known as brachial neuritis, neuralgic amyotrophy). It is not life-threatening at all . . . but there is no treatment. You simply have to wait for the nerves in your arm to regrow (it is a peripheral disease). Unfortunately, not many docs know about it. A teaching hospital would probably pick-up on it right away. Google it and see what you think. In the meantime, take care.

[pneu]

Hello all!

In January I came down with a 102 fever for 2 days and stayed home for a week. The following week I still did not feel well, but, went back to work. I visited the doc and he told me it was a bad virus and it will get better. Two weeks later I went back to the doc with really bad tingling in the back of my legs and also informed him that I had lost some weight in my legs even though I was eating a lot. He told me it was still effects of a virus and I should get better. 3 days later I noticed weakness in my left arm with twitching. I would get twitching all over but rall bad in my left arm. My arm and hand seemed to be getting smaller so 10 days later I went to the doc again. He told me I should be fine but he wanted to run some blood work. This past Friday the 14th he called and told me the blood work looks great! He checked liver, kidney's potasium, in his words everything. I said what about the twitching? He told me I need to go to a Neuro. I googled twitching on line and saw ALS and started to freal out! I am a 29 year old male with a beutiful wife and 2 kids. I feel that my hand is worse everyday ecspeccialy my pinkey. I think I am losing muscle in it and my arm. I can't tell if the weight loss in my legs was muscleand if it was would it show up in blood work that I was losing muscle. I tire real easy after an activity and now am in a state of panic/anxiety over ALS. I am setting an appointment on tomorrow with a Neuro. Does ALS start this fast? I feel weak when I walk and have never this way before.

[wright]

Hey pneu. That sounds pretty darn fast to be ALS. I think your doc is right: it has something to do with that virus. Seems like too big a coincidence that your symptoms occured shortly after your illness. Relax. I'm sure most everyone on here don't think you have ALS. Take care and go get better.

[happy]

Pneu,
From every thing that i have read ALS and MS does not start with a fever. Those are one of the first questions that they ask. Did the onset of your symptoms begin with fever? This is usually the elimination process for MS and Als. I am not a dr so do do your homework and check up on all areas that are a concern. Also as Wright stated in his post muscle atrophy does not take place that quicly with ALs. Did you have some sort of flu or immunzation or any kind of trauma to your neck or spine. Meningitis is something that would give high fever in an adult also Lack of proper electrolytes can cause muscle cramipng and all kinds of muscle problems. Maybe you could check into a B vitiman defiecency.
Just a thought.
Keep us posted and good luck with the neuro tomorrow.
One thing that was recommended to me was to write everthing down before you go in. It is an awesome way to talk to your doc since we forget the symtoms and the way they make us feel when we are in the presence of medical help. They have a way of making you feel like it's all in your head. Write it down!
Most importantly dont worry it does not sound like ALS.
Sleep well tonight :mrgreen:
Robin

[Carolan]

The internet is a mixed blessing. The great thing is that there are forums like this one, where people can share their experiences and find support for what they are going through. Plus, there is so much information on on the web--I don't know how I ever lived without it! But the downside is that the information we find may lead us to a wrong conclusion, especially when it comes to medical issues.

Only a doctor can diagnose you with a disease, and with something as rare and mysterious as ALS, even most doctors can't tell you much about it. Every time we encounter a new doctor (non-neurologists), I have to tell them about my mom's disease because it's just so obscure that they don't remember much about it from medical school.

It's natural to panic when you have symptoms that seem to match up with a horrible, debilitating disease. But keep in mind that some of these symptoms might not even turn out to be what they sound like when you read descriptions of a particular disease. Plus, ALS is a "rule-out" disease, and there are plenty of other curable diseases out there that share symptoms. Your appointments with specialists will focus on trying to find other causes, and ALS is a last resort diagnosis. You will become much more aware of your body during this time, and you will learn more medical terms that you can imagine. There will be frightening days, and some people who are on this board questioning their condition will indeed be diagnosed with a motor neuron disease. But many others won't. The odds are in your favor that something else is going on. Either way, I think that it's important for people to become educated about this disease because awareness will help generate research funding, and if it turns out that you have something else, count yourself lucky.

Good luck with your appointment!

[happy]

Well I finally had my appt yesterday, When I got there he was appolled that my GP had not addressed these issues earlier I understand he made a not nice phone call to my dr.
Any way he showed me my mri and pointed out that I have some type of white stuff creeping down my spine he did say it was some sort of infection that was eating away at my mylean. ? He would not say if I had als. He did ALL the neuro function tests and did say that my reflexs were VERY hyper sensitive. He said that there was nothing he could do for me. He is ordering an mri of brain w/wout contrast and also one of those nevere conduction test emv(?) I do not know what does all this mean? Can anyone help.
He precribed me ultram I have never taken it and am not sure why. I have very little pain except for the time the pain pins and needles run down my arm what does ultram do. He also would not give me a release to go back to work for fear that I may hurt my self at work until i get alittle more stablelized.
The fear has driven me right back into full blown alcoholism, I had to go to St Helena in April and before all this started was going on 9 months of soberity. I am failing in every way. I am not being the mother I should either to help my children get throguh all of this . Please tell me what to do. I have already started drinking it is only 9:50 here in ca . Please help me oh and by the way the neuro surgeon has refered me to the nerolgost. I am such a loser I did not want to go out like this.
lost in Orangevale
Robin

[vmd]

The infection seems to be the cause of your problems. If you belong to AA, then I would contact your sponsor. Can you make it to an AA meeting? I'll keep you in my prayers.

[happy]

I am calling St Helena rehab center as i type.
Thank you for your quick response. This is the kind of hell on earth I never expected to experience. I am totally at a loss for words.
My heart is unrecoverable.
I love you all you are and have been my personal angels.

[Icanmanz]

Hi Robin, I am so sorry to hear about your problems. These are serious problems on top of Als, or possible Als? I am so overwhelmed by your post, that I cannot think straight. Dear, you need lots of help. Is your husband and kids home? Let me ask you a question, if you don't mind. I am going to be blunt, and do not be shy to answer. We are here to help. How long have you been drinking? When you drink is it beer, or hard liquor? You really need to stay away from the alcohol, because it is making matters worse. Think about your children. Your illness and alcohol is killing you, and your heavy drinking is killing your children. They don't want for this alcohol to be a contributing factor on top of your illness! I think it's time for me to quit. I need a break, and will say a Prayer for you while I am on break. I am turning the computer over to my husband. I know he is dying to play Texas Hold'em! LOL! Robin, please stay with us. We will try to be of some help if permitted! God bless! My husband says you are in his prayers, too! Later, friend!

Irma

Irma

[happy]

I started drinking about 1 week ago and since all this diagonse bull I have been drinking daily.
My doctor called me just a moment a go and said tha tmy blood work came back and the only thing that was abnomal was my potasium level. Weird! Another words she said that my kidneys are tying to tlll me something, WHAT? I have lead such an incrediebly healthly lifestyle this is all so unbelievable to me. Hoiw can my body just be betraying me like this? I just sont get it! The alcolhol is turining on me too. I am tired and sick and depressed.
God i need help bad My whole emothional state is being compromisseed I want ot die. But how.
Everyone elese in my home is acting normal and I feel so lost, I get angry for stupid stuff I have no help no one understands the pain I am in except you guys. I just need to be normal again my life was soooooo good.
Love you all
Robin

[happy]

What a fool I have been. With all the incredible things that are spoken here on a daily basis please, please forgive me for whining and making my situation worse.
I had a somewhat good day yesterday. I woke up in pain in my neck. Between the scapula. It felt like a rock, no energry to really do anything so I slept most of the day. I am sure i can attribute alot of that to the stress that I put myself through.
I have some friends that are coming over today to pray for my healing. I'ts the heart that they care enought to be with me bless there hearts.
My MRI is scheduled for tomorrow. Do you think it will reveal anything? And also I got a call from the neurologst that my Neuro surgeon had put a refferal in to him urgently.
This is all so sereal. One day I feel okay the next I am totally down. I hope you are all going to have a great day. My prayers for your happiness and peace one day at a time.

Robin

[CindyM]

Hey Robin- YOU weren't foolish- that was either the alcohol or your illness that was acting up. I hope your visit with your friends goes well, and I hope you get answers soon to what is going on.

One last piece of motherly advice: maybe you can make it to a meeting or call your sponsor today? Just a lottle nudge...:-D

[Lorie]

This is a hard thing for all of us. PALS or CALS. We just have to be there for one another and take it one day at a time. It is overwhelming. We have a group of wonderful people here, especially the VETERANS! We are all here, unforunately for the same reason. I hope we can make it a little easier for you and all the new members.


Lorie:)

[wright]

Hey Robin

I just want to start by saying that it doesn't sound like you have ALS (your symptoms aren't consistent with it at all) . . . and if your neuro thought you did, he/she would have mentioned it. Your symptomos are attributed to the problems you are having with your spine. I'm not sure what to make of it, though. Can you call your neuro and ask him/her to be more specific as to what the "white" streak is on your spinal cord. If they are consulting a neurosurgeon, then it sounds as if it is treatable. Hang in there and let us know as soon as you can, what the diagnosis is.

[happy]

Thanks , Wright,
I did go tho the neuro surgeon and he said that there was nothing he could do for me.
I went for an MRI Brain yesterday w/wo contrast. They seemed really nice, but when I asked if they saw anything could they please put my mind to rest her statement was " I can't go there" Now I work in the medical field and we all stick together, if nothing was wron they would have given me the basic with violating Hippa its not that bad response. My Neuro surgeon gave my GP the riot act for letting my condition go this long. She called me to appease me and give me anything I wanted.
I asked if I could go back to work even on modified duty, but I was denied. They took me out until March 30 th this seems alittle excessive to me.
I havwe an EMG scheduled with the new doc a nerologist on March 6th. In the mean thime I am reeling with fear and the what if's. Not a good place to be I am here but i am not. My drinking is getting worst...I cannot handle the pressure it's alcolholism in full force. Calling a sponser is not even appealing to me they just woundnt understand
I am just waiting. I have scheduled to go into rehab on wed or thur. whrn ever my insurance kicks in and gives the approval.
I am like all of you waiting and waiting. Hoping to hear something anything good.
Thanks for checking in
I have missed talking to you all, I am isolating more and more not good, but what can I say.
Goodbye
Robin :cry:

[wright]

If they are letting you go back to work at the end of March, I'm going to assume that they feel you will be getting better. If they thought it was something serious and something you can't recover from, I don't think they would give you the go ahead for work. And if you're scheduled for rehab, then I would take that as a positive too; they feel that rehab is going to help your condition. Look at the positives from all of this, because they're there. Call your sponsor, because I think he/she will help you and it will get you on the road to recovery sooner. Take care.

[happy]

What I meant to say was alcohol rehab..noone knows it is a desision I am making on my own. I thank you for the quick response. Bye the way I am trying to upload a picture can you help? I am lost when it comes to uploading or computors for that matter.
Robin

[happy]

Hello,

I would have written sooner I got home from St Helena last Friday. I pray that this finds you all in good spirits. My time in rehab was good. I had the time to reflect on the illness and the symptoms that I had been experiencing and the future.
I had been very fearful. Having all thses unexplained symptoms and no diagnosis was driving me crazy. But no matter what I ended up being diagnosed with, I wanted to be a good example and live right. My fear overtook me, but I am better now, thank God! I wanted to write and give the results from my emg that I had yesterday. Man is that test painful! I did not get the offical results of the test all the neuro said was that I did not have ALS. He said that my nerves and muscles responded to the test. I am not sure what that means. In the mean time my symptoms have gotten worse. The twitching has increased and is spreading from jsut my arm to my lats and occasionally one or two a week to the other arm. I am still scheduled for LP to test CSF fluid next week. Can anyone tell me about the jaw jerk reflex? Does this mean a tightning of the chin (uncontrollable) or is it a loss of total control and a sagging like what you see with stroke? I guess it would be associated with the 5th cranial nerve, otherwise known as the trigiminal nerve?
In the mean time I still have all the atrophy in my thenar muscle now it is to the point where I cannot use the fingers at all. Mainly for buttoning or for zipping things the only way to use it is to clamp things in the fingers and palm area. The other thing is I just got out of the blue the worst sore throat and lost my voice for 2 days now I still have a mildly sore throat and hoarse voice. I have had a sore throat off and on for about 7 months. Man this is all so weird. You know when I was in the hosp my husband noticed that my fingerstips and inner palm by thumb (along with finger nails) was purple. :? Oh well.
Talk to you all later...
Robin

[MtPockets]

Happy, I'm glad you checked into rehab. That is a good first step on your part. It shows that you are aware you have a problem and want to do something positive about it. Good choice.

I'm glad you mentioned the pain involved in that test. So many other people have said they had no pain. I had lots of pain from the tests. It made me feel like I was a wussie. I don't know if that is a real word or not. Maybe I just invented another one.

I also know what it feels like to crawl as far back into my cave and hide from everyone. "No body knows the trouble I've seen". Think there was a song about that. Problem is that when I have these what I call, "Pity Parties", I'm the only one there, so no one gets to share in my misery.

I'm just saying don't give up, on talking about your problems. That is what we are here for, to help you and the many others. Take it from me, been there done that.

[hopingforcure]

The jaw reflex, is a brisk movement almost closing when you relax your slightly opened mouth, and it is tapped with the reflex instrument. It is a UMN symptom. You can often have clonus and such with the jaw reflex. It is seen in MS as well as ALS

[CindyM]

Well, let's just take this one step at a time. I am glad you went to rehab, Robin. Good choice! Don't let your symptoms derail you, though. You don't have to shove them under the carpet but I am sure Hopingforacure will agree with me that you don't want to stress yourself too much right now. First things first, as Bill W would say.

[happy]

Hey Capt Al, Cindy and hopingforacure,

Wussie, I dont think so, that test really does hurt. I am with you....
Cindy and hoping for a cure, I am not stressed at all..isnt that amazing, I think I am more frustrated just because I feel sick everyday, I cant remember what it felt like to feel normal! My brain is so foggy..but like you said Cindy, first things first. Being in St. helena and having the opportuity to talk to therapists I was able to put life into perspective...it comes in waves some days are better than others. How are you all doing? I pray that you are well and it will be a great day!

Robin

[hopingforcure]

You guys are so funny, I guess I would think those darn emg's hurt, but I was so worried about watching the results, I would not have noticed if they put a hose sized needle in my muscle. I have had some tests for esaphagus problems, PH monitoring, and some colon tests which, well they make the emg and nerve test seem like fun.
I always think the nerve test is kind of like the invisible fence collar dogs were. No wonder they stay in the yard. My neighbors dog always ran through his, and then did not want to go back in, can see why...LOL

[MtPockets]

Maybe that explains why I was barking so much?

[happy]

Hoping, I think I will pass on any future tests..especially if it makes the EMG seem like a picinic. Man, I too was trying to see the results of the test, (not that I would have known what it meant) all I saw was lines moving up and down. But when he stuck me in the neck with the needle that is when I screamed. I didn't mean to it just came out.
The nerve conduction test was kinda funny. I too can see why the poor doggies dont want to get zapped. It feels weird and abnormal. You would think with all the technology that they would be able to diagnose patients alittle easier. What a mess.
Have a great night. :mrgreen:
Robin

[hopingforcure]

Happy, can sure understand why the neck needle caused a YIKES, that one is sure not fun. I agree guys the tests are so darn old fashioned, I mean heck it had MT POCKETS barking, I think the next nerve test I will start howling...
I was talking to my neuro about that, saying this is as good as testing gets scary.
I remember reading in Augie's book that he only had one emg, and refused anymore, for the torment. I had watched and read about emg's tooooooooooo much, I know exactly what sound is good, and what is bad.. That in itself is just wrong..Hope you have a good night my friends..Hoping

[happy]

HA, LOL,LOL,LOL,LOL Hoping, you have me cracking up! Ah, I love to laugh:mrgreen:

[happy]

Goodmorning everyone,

I woke up this morning a little frightned. I realized i am supposed to go back to work on April 8th. My neuro dr. said that he was going to keep me off until we get an anwser to what my problem is...maybe he forgot.
I am supposed to have an lp on the 1st. I am still feeling really sick. I am soooooo tired all the time. I wouldnt think that it was that big of a deal, but I work in the emergency dept. It is very fast paced and I really need to be thinking sharpley. I still am not thinking clearly. My brain is in a fog. My cognitive brain is not working neither is my memory very good. Does anyone else have this problem?
I am not having the severe symptoms that i was like falling and feeling off balance or the respitory problems that I was having ..but I still have the atrophy in my hand and left arm and recently developed twitching on that side of my body only in the area that is atrophed and occasionally in the back (same side) I have noticed a significant tighness in my jaw and chin. So much so tha it is begining to cause wrinkles in my lower lip ( I need botox. ) Even though some of the symptoms have gone I still would like to know what in the world was going on. All the tests I have had have been normal. Well my blood showed an elevated liver panel and elevated potasium and chloride ..kinda weird. mri's,ct's emg, all normal all I have left is the LP.

But something is serously wrong I KNOW MY BODY! I got some kind of sore throat that has caused me extereme pain when I swallow and severe body ache. also have any women out there that have symptoms experienced any symptoms that are stricly female related? You can private message me if you want. :oops: This is all so frustrating. Other than that, there is nothing I can do about any of it. I WILL make it a good day and do the best I can.
I don't know why but it seems that it would be eaiser if I knew what was wrong ..I wonder why maybe be because then I would know what I have to work with and I would know what to expect. Because now everything is random..
I WILL GET OFF THE COUCH TODAY! You all have a good one!
Robin

[happy]

I was wondering if someone could help me put my mind to rest. :confused:
For about 2 weeks I have been having random twitches on the side of my body that is already atrophyed. My hand and forearm are losing muscle but the twitching just began. I am also having muscle ache. My eyes are red, I jsut look sick I havent slept very well lately. Small bladder issues. No energy. my emg was last week and the dr said he blieved the atrophy was due to some. kind of pinched nerve in the elbow.Could that be causing all of this? Plus he has me going for a LP on Mon. I have been feeling very stiff in the joints too, Stiff neck too. I hate to go on and on...but it feels like things change on a daily basis.

Thank you
Robin

[happy]

also I forgot to mention, that 4 days ago I got a sore throat. Yesterday I noticed that the back of my tongue felt very sore. It's really hard to swallow. Painful in fact. It feels like the worst kind of strep only this is not getting better. I lost my voice completely for 2 days and now it is just hoarse....does anyone have any ideas? I am getting scared again

Thanks
Robin

[happy]

Hi everyone,

I have missed you all. I haven't been online for a week now. I had a lumbar puncture last Friday and have'nt been able to stand up for days. My headache was so severe. Wed. I had a blood patch done and it relieved the headache immediatley. Amazing. Some pain in my back from the puncture but at least it's bearable.
My neuro appt was today for the csf results it was normal. So, with all that in mind, emg normal , csf normal, blood normal....I dont have Ms or als according to my DR. In a previous post Wright had mentioned Parsonage Turner syndrom when I told my dr this last week he said he didn't think so but today he said it might be a possibilty. :confused: I dont have all the symptoms i had before except the neck discomfort and the hand atrophy tightness in the jaw etc I am tired of talking about the symptoms if everything is going to be normal. I will celebrate today and not worry about tomorrow.
Can I still hang out and be all your friends? Any thing I can do t be a support I will do.
Thanks everyone for all your encouragement, advice and friendship. My prayers and support is here if you want it.:mrgreen:

Very sincerely.
Robin

[LindaB]

Dear Happy,
I am so sorry that are alone. I do feel your abandonment. No one should be suffering like you are. I am so sorry. I cry all the time too. Is there no one you can call to help you? This is not fair
Linda

[CindyM]

I will celebrate today and not worry about tomorrow.


Hey Robin. We need more of this kind of attitude around here. I am glad you do not have ALS of MS or any other nasty disease. And with your outlook you should continue to do well. Good news! Cindy

[MtPockets]

"I will celebrate today and not worry about tomorrow."

Great attitude, love it.

Just try to remember,

TODAY IS THE FIRST DAY OF THE REST OF YOUR LIFE.

Let us chose to make it a good one.

http://i160.photobucket.com/albums/t172/ShakeyMarble/Animations/crossheart.gif