Ok I just found out that my grandmother died of ALS at the age of 73, very scary time for e right now knowing that its in my family. I am a 30 year old male who was completely healthy (aside from asthma) before getting sick. I must say though I am from Southeastern, CT (actually Old Lyme, CT). So I am not sure if i should be concerned yet.
I had an over night stay in NYC Columbia Prespaterian Hospital and they did MRI, Spinal Tap, Dopplers and all sorts of other tests on me. Including about 5 neuro exams such as walking and pushing and pulling, and the tickle test on my foot. All my tests came back normal. The released me telling me that they had no idea whats wrong with me.
I am scared out of my wits to think that this might be ALS (twitching and left shoulder and arms problems). Anyone have a clue how common ALS is to get at age 30?
Posted by SForsgren (Member # 7686) on :
Twitching is also a symptom of Lyme. Some researchers have found that over 50% of ALS diagnosed people later are found to have Lyme. Before you start worrying about ALS, have you been tested for Lyme and co-infections via Igenex?
Posted by brentb (Member # 6899) on :
Many of these "genetic diseases" are actually the same @%$# organism passed down generation after generation. Borrelia s/b suspect in all cases of ALS,Fibro,Alzheimers,etc. What I would do is assume that a pathogen is the cause of your problem. Next make your system as hazardous to pathogens as possible. Oil of oregano and a quality silver product should do the trick. Start herxing and you know your on the right track. be sure to replinish with probiotics and take a good supplement with selinium also lots of water. If the progression stops you can then try an appropriate abx. Your catching this soon so fixing the damage shouldn't be a big problem. best of luck
Posted by vachick (Member # 8353) on :
It is rare to get ALS at 30. Take it from someone who thought she had ALS, it doesn't sound like you have that. You need to present significant weakness which usually precedes the twitching.
There are many conditions that cause muscle twitching (Benign Fasiculation Syndrome, Lyme, various muscle disorders, dehydration, vitamin deficiencies, etc).
They are testing me for a metabolic disorder and I have muscle twitching and jerking like crazy. I may have that PLUS Lyme. Who knows?
Don't stress about ALS...it will consume you...focus elsewhere.
Posted by Mathias (Member # 5298) on :
Unlikely that Columbia would miss an ALS diagnosis. They have and ALS center and specialize in it. Don't worry about it being ALS.
Posted by groovy2 (Member # 6304) on :
Hi Luke
My sister lives by you in Pensulvania- She knows many people who have lyme--
She told me that at the parties she goes to the main topic of discussion and the parties is Lyme--Always--
Luke-- you live at Ground Zero for lyme disease--
From what you said on your symptoms list--you sound like you are positive for at least lyme and maybe more--
At some point you are going to have to make a dission-
After you do some more reasearch--
If you think you have Lyme--
You should start treatment for it-- Sooner than Latter--
In the mean time if you find out some thing else is wrong with you-- not much harm has been done --
Let me tell you -- Once this disease get started its hard to stop--
I spent 18 yrs looking for the cause of my illness-- I sure wish the internet was around when I first got sick--
When I figured out what was wrong with me -- I had to make up my mind that I was not going to let this disease win--
From the first day I have fought this desease with all my might--
I have spent thousands of hours researching my disease-- Teaching my self every thing I could find on it--
I think I have learned how to cure myself--
It was hard to do-- But you can do it too--
If your working right now and dont have the time to do the reasearch you need to do--
Take some time off from work and do the reasearch--
If you had cancer I bet you would read everything you could find about it--
To be sucessful in getting over lyme-- You have to do this also---
From what I remember from your symptoms list you have been sick a short time--
You can get Better--
If you have to --quit your job so you can use take time to figure out whats wrong with you-- You can always get another job-- another Life is a Litte Harder to DO --
My regular doctor told me that I was the only person he had ever had that figured out what was wrong with me--He is 70 yrs old and simi retired --
He is one of the coolest person I think I have ever met-- I hope I am just like him when I get that old---
I had to teach him about Lyme- Most doctors dont know Squate about lyme and he was no different--
So I did my reasearch and then--
I Paid my doctor to Read the info that I had collected-
I tought Him about Lyme--
The Look he had in his eye-- when he figured out that threw the years --- the patients he had -that he could not figure out what was wrong with them
Maybe Many of them may have had lyme--
My doctor told me that-- Most people dont take control--
He told me this analigy (spelling)
With most of his patients - If there house was falling down they would just stand there and get Squashed---
Me-- I get out of the way --
So Luke what ever you decide to do--
Dont decide to be the bug that gets squashed---
--Jay--
Posted by lymelady (Member # 6207) on :
Did your grandmother live in Lyme, Conn. also? Have you ever considered that ALS is Lyme in the first place and maybe there is no such thing as ALS, just Lyme disease. Lymelady
Posted by David95928 (Member # 3521) on :
There has been research that shows that MS is not evenly spread geographically. It occurs in geographic clusters ..... that correspond with tick populations. I suspect ALS may be similar.
1. The probablility of having ALS is low. The probability of you having it at such a young age is extremely low.
2. The probability of you having Lyme, based on location and symptoms, is high.
3. For most of us, getting treated for Lyme was a leap of faith. I had only one positive band, 41 on igm. If you delay treating POSSIBLE Lyme disease while waitng for a definitive, pre-treatment answer, you will have a very difficult time recovering fully.
4. I suggest you get moving as fast as possible. you are in yourwindow of opportunity. Don't squander it.
Posted by DamnTics (Member # 8667) on :
This may seem like a dumb question but I see it being danced around all the time here...
I know there was research done that theorized that MS was caused by a viral catalyst... has there been any research that it could be from a bacterial one (ie Lyme).
If so, can you stop Lyme from developing into MS?
Has anyone had MRI lesions that went away after treatment or are they permanent?