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scgal

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I just want to say that I am thankful for this website, and anyone that can offer some advice for me. I know that this is a very hard disease to have, and I am praying for those that are diagnosed with it. I have many undiagnosed symptoms and am wondering if anyone with ALS had symptoms that presented this way or does anyone think that it could be a slow onset ALS. About 5 1/2 years ago I had a flu shot and a few days later I started having twitches every 30 seconds all over my body (everywhere that I have a muscle). I also had a rapid heart beat and couldn't sleep much for 3 weeks straight because of the myclonic jerks. Thankfully this all went away after about a month, and didn't have many problems except for a daily twitch here and there. Two years later I had another bout of symptoms, although this time it was a little different. I again couldn't sleep for the jerks in my sleep, I had twitches everywhere, but this time my right leg was weak feeling and heavy. Those symptoms eventually went away after about a month, and now I am in the middle of another episode. This time it is more concerning than ever. It started with my neck hurting really bad and feeling like it was hard to hold my head up. My neck has hurt so bad that I can't hardly turn my head sideways. The pain from this comes and goes as I am taking IB profen and have been having massages. Also, I am having twitches again which are mostly in my right leg but sometimes in my left, and occasionally other places. My right leg also feels very week and I have had a shooting pain that comes several times a day. I can walk and go up and down stairs, but when walking on stairs, my right leg shakes a little. I tend to drop things a lot with my hands, and I stumble when walking quite a bit but thought that I was just clumbsy. I have been to a neurologist who did a sleep deprived EEG and an MRI that was looking for MS. Both came back normal. She also said that my physical tests looked normal to her. Do you think that this could be ALS? I am 29 years old and just got married 1 year ago. Anyone that can offer advice to me would be so helpful. Whether I have ALS or not, I would like to somehow get involved with helping to raise awareness and raise money for those who suffer from this disease.
 

ltr

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I'm sorry that you are having such horrible problems. I do not have als (that I know of), butI know how you feel. My symptoms are a lot like yours, in that, it seems to go away for short periods of time (mine is about a week, sometimes longer) and then the symptoms come back. When I walk down steps my legs visibly shake. My hands are weak and I drop things. My muscles spasm, especially in my neck, back and legs. It is unbearable. I find it interesting that your heart rate was rapid, because my illness began with rapid heart rate. The doctors could not figure it out and I even had heart surgery for an ablation. During the surgery my heart rate went to 300 beats per minute, so they had to cancel it. Seeing as I was asleep, under anesthesia, that rid any thought of anxiety being the culprit. I already knew it was not anxiety. Next, the docs thought it was a pheochromocytoma, then MS. So, sometimes these illnesses that cause such unbearable neurological symptoms just have to run their course until the docs can figure it out. Statistics say that als rarely attacks someone as young as you. Maybe you can get to a neuro who specializes in MND's or an als clinic? I hop things get better for you soon.
 

JenniLee

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Some symptoms may be the same, while others are different. I know you want to know, but rest your mind and don't worry. First, go back to your primary care doc and have him run blood work and get a referral or find one with a good reputation for neurodiagnostics. With the symptoms of ALS, there are so many avenues to pursue. Everyone here will tell you it is a diagnosed of exclusion. So, go back to the beginning, starting with the flu shot...was it a reaction? Ask your primary where to go next? A Lyme clinic, an immune specialist, a neurologist....

Unfortunately, that's all I can offer for advice.

In good health...
Jen
 

patricia1

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I HAD A TETNUS SHOT AND i FEEL ALL MY PROBLEMS WERE FROM THAT SHOT I have rapid heartbeat trouble sleeping neck stiffness muscle pain and then slurred speech now in my arms but it took 6years to go to my arms I have als 8years so I guess it is slow you may have guillle barre from the flu shot or maybe lymes you need a spinal tap emgs mri and blood test hope this helps good luck pat
 

ltr

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Pat,

A few years ago I had a tetanus shot and I became very ill. I developed lymphedema of the head. I had many little swollen nodes all over my head and ached like the flu all over. You've got me wondering if that's how long ago my problems began.
 

patricia1

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The day after my shot my head was tingling for weeks and I developed a abcess in the arm it was injected I refused to ever get another and I wont let any of my family member have one Pat
 

BWk

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rapid H.B.

itr, I also started with rapid heart beat [SVT] which I'm sure you know what that is and had an ablation [while awake in my case] but sedated in aug. 05 and then I started having major als symptoms about week afterwards, but I now realize I was having strange symptoms even six mo's before the operation, trembling in the mornings, shakiness, clacking teeth together in my sleep [that I believe is a new one]. Barry
 

REMSENBURG

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Every one should go out and get the book The Secret by Rhonda Byrne you can get at Boarders at 30% off its a great book and I think it will help evryone GOD SPEED
 

ltr

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Barry,

You are the first one I have encountered that started like I did! After my ablation I realized I had tremors, too. My right ear had sharp pains in it and the hearing felt diminished. I also had what I thought was tennis elbow for months. I could hardly use my arm. It's all very bewildering.
 

scgal

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Thanks for your replies

Thank you to all of you that have replied to my post. Pat, I have a question for you. After your symptoms began, how long did it take for them to diagnose you with ALS? Was it not until you had the slurred speech or the weak arm? I have been so frustrated with my doctors and I beleive that sometimes even my own family doubts that I am having problems. Most of the problems that I am having cannot be seen. I didn't mention in my earlier post, but I have had bloodwork done. They tested my thyroid, my electrolites etc. But, I have not been tested for Lymes or Gullian Barre Syndrome. I even told my doctor that I thought that I might have Gullian Barre Syndrome, but he said that if I did that I wouldn't be able to walk or anything. But, I have heard of people having more mild symptoms that have lasted for years. My general doctor says its stress and even my neurologist blew it off to being stress. It is so frustrating though, because I was completely fine and not stressed out until the physical problems started. Then I looked up twitches on the internet and now I am really stressed out. I am willing to admit that maybe my symptoms seem to come back at times of stress, but Stress did not cause this problem- I am 100% sure of that. I am usually a very deep sleeper, and after that Flu shot, I literally couldn't sleep but an hour or two a night for 3 weeks straight. I have typed in Flu shot and twitches on the internet and there were several people who have had similar symptoms after a flu shot. Sometimes I think that I know more about my problem than my doctors do. I wish that I had a doctor in my family or someone that I could just go in and say this is what I need. I need testing for Lyme, gullian Barre, CIDP, I need an EMG, a spinal tap, a MRI on my spine, etc. It makes me so mad to pay 50-100 dollars for them to tell me that it is stress. I have even been to the emergency room twice because I woke up feeling numb all over. And, the ER said that it might be a panic attack in my sleep. Give me a break. Another thing is that any time you go to a neurologist, they want to see you first for a visit and then schedule you later for another visit for the test. I wish they could just do it on the same day. It is such a slow and frustrating process.
 

scgal

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This is so wierd

Itr and Pat,

That is interesting that you both had complications after a tetnus shot. And, you both had a rapid heart rate. Also, didn't BWK say that you had a rapid heart rate too? Mine was 144 beats per minute when I went to the doctor but that was actually after most of the symptoms were gone. So, there is no telling what it would have been during my first episode after the flu shot. The day the symptoms started, I called the health department, and asked them if the flu shot could have caused this. And, they said, are you allergic to eggs? And, I said no. And the lady said, I have never heard of the flu shot causing things like this, it must be something else. And, then when the doctor said that it must be stress I just chalked it up that it wasn't the flu shot. Now, years later I know that it was the flu shot, but I don't know what to do about it. What if I could do something to get this out of my body and stop all of the problems that I am having. Yesterday I went to GNC and bought a full body detox drink that I am going to try. You drink it for 2 days and it was about $40. What if there really is something that you could do to prevent some of these degenerative conditions, especially at the stage that some of us are at- with no profound weakness all over. I have started taking vitamin B12, vitamin E, magnesium, and I am drinking tonic water mixed in with my drinks which has quinnie in it. Quinnine has been the trick to stop my muscle spasms in the past. I just want for it to go away again like it usually does. Well, I am so thankful for the support that each of you have already given to me. It is so nice to know that their are caring people here who don't think I am crazy. :grin:
 

patricia1

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My diagnosed came after going to a als clinic 5years after onset of slurred speech and slight arm weakness Hope that helps you .Where do you live you should go to a AlS clinis ASAP Pat
 

Howdy

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Flu shots

Flu shots contain 25 micrograms of mercury. One microgram is considered toxic. Mercury is a brain toxin. This information is according to Hugh Fudenburg M. D. Perhaps the worlds leading immunogeneticist.
 

Meg1

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Howdy said:
Flu shots contain 25 micrograms of mercury. One microgram is considered toxic. Mercury is a brain toxin. This information is according to Hugh Fudenburg M. D. Perhaps the worlds leading immunogeneticist.

Flu shots that contain mercury have only 12.5 micrograms in each dose--not anything close to a toxic amount--and many have no mercury at all.

Hugh Fudenberg is a quack whose licence to practice medicine was revoked in 1995.

http://briandeer.com/wakefield/hugh-fudenberg.htm
 

Howdy

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Mercury

Meg, Hugh Fudenberg may be a Quack, I don't know if he is or not but there are over 3 million articles about the dangers of mercury on the Inter net. I don't think that they are all wrong. The FDA has a site about Thimerosal which is 50% mercury being used as a preservative in vaccines. They say that a vaccine containing 0.01% thimerosal as a preservative contains 50 micrograms of thimerosal per 0.5 ml dose or aproximately 25 micrograms of mercury per 0.5 ml dose. There site is www.fda.gov/cber/vaccine/thimerosal.htm#pres Howdy
 
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