View Full Version : It does not Make Sense
rosales20
07-18-2007, 02:23 PM
Hello,
My name is Manuel Rosales. My previous quote informed you that my EMG came out negative. However, I am getting more twitching on other parts of my body that I did not have before. How I did not have some twitching during the EMG is beyond me. I showed the neuro some of my twitching however, my body simply did not begin to twitch. But then it did. My should and lef arm did.
Either he did not see it or he ignored it. He informed me that some people have twitches and that it is normal. Also, I bite my tongue more than ever and I think that I am getting some twitching. I have indentions in the morning that partially fill in throughout the day. Today, I worked out with my football players in the morning and did ten 45 yard sprints while dragging a sled with 60 lbs.
I have no idea as to what is going on. The other day I was reaching for somthing and I noticed that my pinky and the finger next to it began to twitch/shake. Is this a sign of weakness? I have strength though, what is up?
I am coming off of my original negative EMG high and being hit hard by reality. Does anyone have any advice or willing to share a similar experience. I have a 28 yr old brother with ALS. I plan on getting tested for the SOD1 gene soon. I am waiting on my neuro office to schedule a follow up.
The Lord has a plan for all of us, I just hope that he does not send me down the same path as my brother. Sharing his pain has been difficult enough for our family. If I am stricken as well, it will be devastating.
Manuel
Manuel - I'm really sorry that you're scared. I know what you mean about coming down off the negative test high, I have had that also. You feel good about the appt. and then our researcher minds kick in and we know things the docs don't mention. We all have that happen.
You already know that you could have a kazillion things happening. Maybe even a bad virus attacked your system. Try to think of treatable things while you are waiting for your blood test. We are here for you and understand how you are feeling. Please try to hang in there. ~Leslie
jimercat
07-18-2007, 03:24 PM
Manuel,
Sorry you are now experiencing more difficulties. Has the neuro talked with you about any other possible diagnosis? It sounds as if you are really physically fit, but that can deteriorate fast as you know, having a brother with ALS. My husbands uncle had Parkinsons. There are so many things that can casue you symptoms. I'm sure other can chime in and tell you of their personal experiences. Please keep us informed.
I'm so scared and worried that i have als.
Can you please give me your opinion. I'm almost 25 year old female. I have been experiencing muscle twitching and weird don't know how to describe the feeling in my legs like spasms/or bubble feeling. I had a neurologist appointment yesterday and he didn't tell me anything at all. He seemed very shocked at my reflex's in my legs (as has every doctor i have been too). He is sending me for an eeg i think it is called but that is not for another 2-3 months.
Please help as i'm so so scared and upset.
I have had the muscle twitching for about 1 month
jimercat
07-18-2007, 11:17 PM
Kris,
You need to describe your twitching. Is it constant in one area?
The test is prob an EMG.
where are you located? Are you going to an ALS clinic? A local neuro?
You are very young to be thinking of
ALS. Any other symptoms?
Hi thankyou so much for your reply.
Umm it is constant in my legs. Sometimes i feel it in my feet/ bottom/stomach, and very rarely other places (hands/arms). It doesn't always feel like a twitch i don't know it is hard to explain but like my muscle in my legs is doing something strange.
I'm from Australia. I saw a Registrar at a hospital and he referred me for an EEG the tests says (he said they put things on your head) but i don't know the date when this will be done they said somewhere between 2-3 months.
Other symptons are i was feeling what felt like a vibration feeling in my left leg pretty much constant as well. My reflex's feel weird (like when i walk). I did have sore arms and legs (not sure if that may have been in my head though)
I for a good few months/ years now i have had problems with excessive muccous in my throat and trying to swallow to get it down constantly. I was diagnosed back in April with Helicobacter. so i think they put that down to that. I was put on tripple therapy to kill it and had a test a month later and it showed it was gone but i was still left with the Burping and always needing to swallow.
Also i feel like my moods are weird as well. Happy/sad
I'm just so so so scared!
CindyM
07-19-2007, 05:31 AM
Hi Kris and welcome to the forum. I wish there was a definative test that could rule in/out ALS but unfortunately Doctors can only tell when a person has MND if they meet certain criteria. I could list the criteria but at this hour of the day I am apt to leave something out so maybe you should do a search of this site to find a thread that discusses the 4 stages of DX. I can tell you that you have little reason to worry on 2 counts: first, ALS is very rare and rarer still in people your age. It happens but rarely.
Second, there are guite a few folks on this forum who have had your exact symptoms, and more, for months and the docs sitll are not sure what is happening. It is kind of a good news, bad news thing, I guess. Bad news in that you may not have an answer when you go to a clinic and good news because every day you don't get a DX of ALS is another day to enjoy your life
At least that is how I see it. Cindy
Thankyou for your reply.
I was going to ask you what are the 4 stages. But i'm scared if you tell me i will say that is what is happeing to me.
It it true that if you had ALS you would have weakness first? (troubles walking etc)!
I know this is going to sound stupid. But i just know i deffinatley have als. I can just sense it in my body. By all the symptons people have described are what i have. Plus what i can feel in my body. I'm only 25 and i'm so so so scared! I don't know how to get on with my life while i'm waiting for things to get worse.
I have read how some peoples symptons started after a a tetnus shot. I had one a couple of months ago........... ! Know i'm having all of these problems!~
CindyM
07-22-2007, 07:07 PM
Kris-there is a famous motivational psychologists who says we become what we think about most of the time. Not that anyone could wish their way into a terminal illness, or wish their way out of one, for that matter.
But you state, I don't know how to get on with my life while i'm waiting for things to get worse. One way to move on is to change your thinking. If you have ALS, it will show itself in its own time. If you decide you can't move on without knowing for sure, you could be in for a long wait. And you could waste a year or two thinking bad things while, in fact, you might be healthy.
Or you could spend time with friends and family, develop a hobby, learn something new, go help real ALS patients. At the end of the day, you will be a happier person, with or without ALS.
You asked how people with fearful symptom's cope. That, in a nutshell, is how they do it.
...Regards, Cindy
I so wish i had your strength! May i ask do you have als or do you know someone with it?
patricia1
07-22-2007, 07:37 PM
I have read how some peoples symptons started after a a tetnus shot. I had one a couple of months ago........... ! Know i'm having all of these problems!~
My symptoms started with a tetnus shot I asked my neuro if it could have caused the ALS and she said yes ,they anr now studying the people in the service that have ALS and the injections they get when they enter the service. Pat
Now i'm really scared. I know you said i was to young to have this and to leave the forum. But i had a tetnus shot about 2 months ago, now i have all of these symptons!
I must have als then!
Since there are millions of people who have tetanus shots and we know that ALS is a rare disease, this would mean that if a tetanus shot was involved in the development of ALS, there would have to be other contributing factors. I did read a report, however, that showed a tetanus bacterium associated with neuropathy. Peripheral neuropathy shares many symptoms with ALS. Others are hypothesizing that if the tetanus bacterium is related to motor neuron disorders, then strong antibiotics may be helpful in the treatment of these disorders.
Out of curiosity, how many people on these baords who have been diagnosed with ALS or are waiting for a diagnosis had a tetanus shot shortly before the start of their symptoms?
patricia1
07-23-2007, 04:48 PM
I developed symptoms after a tetnus shot Pat
How did you happen to associate your symptoms with the tetanus shot? I mean how were you alerted to this possible relationship. I ask because we normally would not think to associate a tetanus shot with the beginning of neurological symptoms.
How long before you started to experience ALS symptoms from the time you received the shot? I believe your first symptoms were slurred speech? Take care.
Lorie
07-23-2007, 05:34 PM
I am going through the same symptoms, Has your Doc. Had a Thyroid Test, Magnesium and Calcium Test on you???? These can cause the same symptoms! My brother also has ALS with no Familial History.
Let me know,
Lorie:-D
patricia1
07-23-2007, 05:35 PM
I bcame very sick after my shot My head started to tingle for week after. my arm became very swollen and painful. I was a nurse at the time and read the insert that the vial came with and it said IN rare causes neuro problems can develope I am sure you can get the insert on the internet.Great Question WHO DEVEOPLED SYJMPTOMS AFTER TETNUS SHOT Pat
Pat:
You became sick after the shot, but how long before you experienced symptoms that you knew to be ALS related?
It woud be nice to poll the members here to find out who developed symptoms after a tetanus shot.
patricia1
07-23-2007, 06:02 PM
Since there are millions of people who have tetanus shots and we know that ALS is a rare disease, this would mean that if a tetanus shot was involved in the development of ALS, there would have to be other contributing factors. I did read a report, however, that showed a tetanus bacterium associated with neuropathy. Peripheral neuropathy shares many symptoms with ALS. Others are hypothesizing that if the tetanus bacterium is related to motor neuron disorders, then strong antibiotics may be helpful in the treatment of these disorders.
Out of curiosity, how many people on these baords who have been diagnosed with ALS or are waiting for a diagnosis had a tetanus shot shortly before the start of their symptoms?
Go to tetnus shot package insert Very interesting stuff
patricia1
07-23-2007, 06:03 PM
about a year later
captwilly
07-23-2007, 06:32 PM
:) Kris: you can worry yourself nuts about the unknown or you can get on with life till you find out one way or the other.. I have als and I can tell you itsw no walk in the park, but how you react to the disease is strictly up to you. You can have the illness but it cannot have you unless you allow it. Take joy in the little victories each day and dont sweat the failures let you friends and family share in your efforts, those that care understand...those that dont, dont matter....wm
CindyM
07-23-2007, 07:03 PM
Kris- I am in the same boat as you. I have had symptoms for over a year now. Exactly 12 months ago my neurologist told me my symptoms were consistent with ALS and he said "you are a very sick woman." We sought a second opinion at the ALS clinic and they say they cannot tell since my emg's are clean. My symptoms get mildly worse but not enough that anyone could see with the naked eye so I am holding off going back until something dramatic happens. I refuse to worry. It is not the way I want to live. I want to enjoy my life and do all I can, while I can. When I start to feel sorry for myself, I recall the PALS on this forum that can no longer use their arms or legs.
Thank you for terming it "strength." I am not sure it is strength, as much as being very practical. Thanks for the compliment, though. Cindy
Lorie
07-23-2007, 07:15 PM
Take joy in the little victories each day and dont sweat the failures let you friends and family share in your efforts, those that care understand...those that dont, dont matter....wm
Good advice. For me, the difficult part is putting this advice into practice.
By the way, I am going to start the tetanus thread in the "General Discussion" section to see if we get more hits over there. Anyway, the idea that a bacteria may be responsible for some forms of ALS is an interesting idea.
About the tetanus shots.....I find this very interesting because I had a tetanus shot quite awhile before my severe symptoms started, but two weeks after I had it I developed lymphedema which is a rare side effect of tetanus. Every gland in my head was swollen and extremely tender. I felt achy and fluish. Very interesting.
patricia1
07-24-2007, 07:12 PM
How could we prove this ?This is scarry I will never have anyone I love have a tetnus shoy ever.And one of my neuro kind of blew me off too when I mentioned it Maybe we should go public with this PAt
CindyM
07-24-2007, 07:38 PM
It's a mystery to me what they decide to research and why. I'd love to know, for example, if anyone ever studied wether or not there is a link between tetanus or any kinds of shots and ALS. And if enough people come forward to say they believe there is a connection to their shot and their DX, who would we get to research this? We may be on to something, folks. Can our forum (you know who you are) find out how we get a major lab or university to look into our hypothesis? Just a thought...Cindy
