New to the group

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

Moderators: JohnV, Arron, garym

New to the group

Postby Zach on August 22nd, 2003, 1:35 am

I have delt with anxiety problems ever since I can remember. It never started effecting me physically until about 5 years ago, when I started having severe stomach problems. This was the first in a series of health problems that impacted my life in a big way. Some I contribute directly to anxiety, some to other things. It's almost impossible to say exactly how my BFS/Fibro nightmare began. I do have some theorys but of coarse, no way to prove them to myself or anyone else.

In october of last year, I began taking antibiotics for an infection I had. It was a fairly severe outbreak of acne on my face. This seemed very strange to be dealing with these types of problems at 30 years of age but there it was. After being on antibiotics for 2 months, my skin completely cleared and I stopped taking the medicine abruptly.

About a week after that, sometime in early december, my left leg began to ache and feel weak, along with my lower back. I had delt with back pain in the past, so I didn't think much of it until a week or so had gone by and it didn't go away. Then, my other leg began to ache and feel weak. Suddenly, my muscles started to twitch violently. Starting with my legs and eventually moving up to my torso and arms. These fasciculations became visible and I also started getting mild cramps and a feeling of malaise. My muscles were also aching quite badly at this time. Some of my muscles were sore to the touch.

Being a curious person and somewhat net savvy, I started to search the internet for answers. This proved to be a dangerous practice. It only took a few days for me to become convinved that I had ALS. The timing was also quite bad, being right before Christmas. Needless to say, it was not a happy holiday season for me. Filled with fear and unbelievable stress.

In early January, my symptoms seemed to level off a bit and I made an appointment to see a neurologist. Actually, my regular physician was good enough to order an EMG for me! What a guy. So 5 weeks after I had my first twitch, I had an EMG. It was completely clean. The neurologist who performed it, also did a quick clinical exam. He stated that there was no sign of ALS or any other neurological disorder. I was momentarily relieved but still scared and confused. I remembered only too well all the stories I read about clean EMG's followed by dirty ones. In reality there were only one or two but it seemed like a thousand.

The symptoms improved slightly after that but never went away. One thing I do remember about that day is that I felt completely normal for about 6 hours after the test, not one twitch.

Since then, I have had several clean neurological exams, a lot of twitching and a lot of pain. I still deal with perceived weakness on a daily basis. I also have exersize intolerance and sleep difficulties. The hardest thing for me to deal with is probably the pain, which is almost never severe but always mild to moderate.

Yet through all the fears and sometimes, sheer terror, I have not lost significant strength. I have what I believe is a combination of Fibromyalgia and BFS. I have not found anything yet that seems to work well for the pain, so if anyone has any input, please let me know. Thanks so much for reading my story.

Zach
Zach
New Member
New Member
 
Posts: 6
Joined: August 22nd, 2003, 12:55 am
Location: kentucky

Postby reneeintx on August 22nd, 2003, 12:05 pm

Are you the Zach from Braintalk?? I was just wondering. I read over there, but don't post.

Anyways if not, welcome :)

I'm a very anxious person also. I worry alot. I've had a completly clean emg also. I jog 3-4 times a week and lift small weights to keep fit and prove to myself I can still do them without weakness.

The worry I have is the stories of a clean emg then down the road still developing ALS. :(

That stinks worrying over Christmas. You see, my twitching started last fall, just in the eye. At Christmas, it was still just in my eye. In january is when my whole body took over and I started looking on the internet...same story, different day.

I'm sorry about your pain. I don't feel any pain, but alot of people here do.

Hang in there, we both are just fine!

BTW where are you in KY. I spent alot of my childhood there. I lived in Bowling Green, and my husband is from Glasgow.

GO WILDCATS!

Renee
reneeintx
Selfless giver of time
Selfless giver of time
 
Posts: 185
Joined: January 23rd, 2003, 11:33 am
Location: deep in the heart of texas

Re: New to the forum

Postby Zach on August 22nd, 2003, 6:40 pm

Hi Renee. I am that Zach from the forum, hope you won't hold it against me! heh heh Unfortunately, the forum is down and has been for quite some time. I've heard lots of good things about this support group and wanted to check it out for myself.

I think it's great that you're doing things to keep your body in shape. I could learn a thing or two from you! I'm also happy to hear that you had a clean EMG and that you're not in pain.

A Kentucky girl? That's deffinately a plus. I'm from Minnesota but just moved here fairly recently. Other than the lack of good neurologists around here, it's a nice place to live.

I think the stories of clean EMG's follwed by dirty ones are few and far between. It's also hard to say exactly how accurate these stories really are. I try to keep in mind that the *clean* EMG could have been relatively normal with a few minor problems that are not mentioned. EMG's are pretty good indicators of MND and other nerve problems.

Thanks for your reply and take care!

Zach
Zach
New Member
New Member
 
Posts: 6
Joined: August 22nd, 2003, 12:55 am
Location: kentucky

Re: New to the group

Postby eric on August 22nd, 2003, 7:18 pm

Zach wrote:I have delt with anxiety problems ever since I can remember. It never started effecting me physically until about 5 years ago, when I started having severe stomach problems. This was the first in a series of health problems that impacted my life in a big way. Some I contribute directly to anxiety, some to other things. It's almost impossible to say exactly how my BFS/Fibro nightmare began. I do have some theorys but of coarse, no way to prove them to myself or anyone else.

In october of last year, I began taking antibiotics for an infection I had. It was a fairly severe outbreak of acne on my face. This seemed very strange to be dealing with these types of problems at 30 years of age but there it was. After being on antibiotics for 2 months, my skin completely cleared and I stopped taking the medicine abruptly.

About a week after that, sometime in early december, my left leg began to ache and feel weak, along with my lower back. I had delt with back pain in the past, so I didn't think much of it until a week or so had gone by and it didn't go away. Then, my other leg began to ache and feel weak. Suddenly, my muscles started to twitch violently. Starting with my legs and eventually moving up to my torso and arms. These fasciculations became visible and I also started getting mild cramps and a feeling of malaise. My muscles were also aching quite badly at this time. Some of my muscles were sore to the touch.

Being a curious person and somewhat net savvy, I started to search the internet for answers. This proved to be a dangerous practice. It only took a few days for me to become convinved that I had ALS. The timing was also quite bad, being right before Christmas. Needless to say, it was not a happy holiday season for me. Filled with fear and unbelievable stress.

In early January, my symptoms seemed to level off a bit and I made an appointment to see a neurologist. Actually, my regular physician was good enough to order an EMG for me! What a guy. So 5 weeks after I had my first twitch, I had an EMG. It was completely clean. The neurologist who performed it, also did a quick clinical exam. He stated that there was no sign of ALS or any other neurological disorder. I was momentarily relieved but still scared and confused. I remembered only too well all the stories I read about clean EMG's followed by dirty ones. In reality there were only one or two but it seemed like a thousand.

The symptoms improved slightly after that but never went away. One thing I do remember about that day is that I felt completely normal for about 6 hours after the test, not one twitch.

Since then, I have had several clean neurological exams, a lot of twitching and a lot of pain. I still deal with perceived weakness on a daily basis. I also have exersize intolerance and sleep difficulties. The hardest thing for me to deal with is probably the pain, which is almost never severe but always mild to moderate.

Yet through all the fears and sometimes, sheer terror, I have not lost significant strength. I have what I believe is a combination of Fibromyalgia and BFS. I have not found anything yet that seems to work well for the pain, so if anyone has any input, please let me know. Thanks so much for reading my story.

Zach
hi there zach, this all started for you after you took an antibiotic (the twitching). im thinking that you may have had a bacteria that was dormant or causing you anxiety and stomach problems.at the time and when you took the antibiotic it was fighting this bacteria as well as your acne. when you stopped the bacteria which did not totally die off came back with a vengence. in my opinion I would think that lyme could do this or any of the bacteria that came from insects. the fact and im no doctor is that it started with the ending of an antibiotic. i did the same thing i took an antibiotic for what i thought was the flu and i did not know that i had an active infection from lyme disease. the cipro *beep* off the lyme bacteria and when I stopped the cipro, profuse fasciculations. im on antibiotics to kill the infection and my fasciculations are almost gone. and i dont have that feeling like i my legs are week anymore. just a thought!!!!
eric
Hero
Hero
 
Posts: 353
Joined: June 3rd, 2003, 7:52 pm
Location: long island

Re: New to the forum

Postby Zach on August 22nd, 2003, 7:52 pm

That's something I've considered. It's hard to say whether or not the antibiotics had anything to do with this or not. Your insight makes a lot of sense though. I have also considered getting back on the antibiotics to see if my symptoms improve. I need to get checked for Lyme at some point. I would be suprised if it turned up positive simply because this has not presented like an infection. No fever, no chills or rash. No loss of appetite. I know Lyme can also be deceptive when presenting so I think it's worth checking out.

As far as other types of bacterial infections are concerned, I would think they would be long gone by now. That's not to say that whatever it was couldn't have caused my immune system to go haywire and cause all these nasty syptoms.
Zach
New Member
New Member
 
Posts: 6
Joined: August 22nd, 2003, 12:55 am
Location: kentucky

Re: New to the forum

Postby eric on August 22nd, 2003, 8:11 pm

Zach wrote:That's something I've considered. It's hard to say whether or not the antibiotics had anything to do with this or not. Your insight makes a lot of sense though. I have also considered getting back on the antibiotics to see if my symptoms improve. I need to get checked for Lyme at some point. I would be suprised if it turned up positive simply because this has not presented like an infection. No fever, no chills or rash. No loss of appetite. I know Lyme can also be deceptive when presenting so I think it's worth checking out.

As far as other types of bacterial infections are concerned, I would think they would be long gone by now. That's not to say that whatever it was couldn't have caused my immune system to go haywire and cause all these nasty syptoms.

zach: eric here again and tonight i have a fever from lyme disease, its nice to know that my fasciculations are going away with all the fatigue and weakness. there is no accurate test for lyme disease. most of the time people who have active infection dont test postive. you need to read up on lyme and get some info on it. the symptoms that lyme causes mimic an als like state with fasciculations as bieng number one and weakness bieng the other. the long duration and downhil slope is typical of lyme. any that is what happened to me and Im living proof. get to an infectious disease doctor and tell him to just give you th antibiotics and see if you respond to them. if you do you will get a herxhiemer reaction after about two days and that is how you will know. dont wait for test they are never right!!!!
good luck
eric
Hero
Hero
 
Posts: 353
Joined: June 3rd, 2003, 7:52 pm
Location: long island

Re: New to the forum

Postby Zach on August 22nd, 2003, 8:33 pm

Sorry to hear that you are feeling poorly Eric (fever and all). I'm pleased to hear that your twitching has gone away though. Sounds like the antibiotics are working! There was a lady from the Braintalk forums that had similar symptoms for quite a while and started taking antibiotics with a vast improvement. She is convinced she has Lyme, I think she's right.

Do you have perceived weakness or actual muscle weakness? I am assuming with Lyme you would get actual weakness, am I right? I may have some mild weakness but if there is, it's very mild at this point. I can't say my illness has been progressive but it has not gotten a lot better, that's for sure. I also have pain, which is not real typical with BFS although I know some have it.

Thanks a lot for your help. I am seeing my internist tomorrow and I will ask him about seeing a specialist. Take care and I hope you continue to see improvement, I will be keeping my fingers crossed for you.

Zach
Zach
New Member
New Member
 
Posts: 6
Joined: August 22nd, 2003, 12:55 am
Location: kentucky

Re: New to the forum

Postby eric on August 22nd, 2003, 9:17 pm

Zach wrote:Sorry to hear that you are feeling poorly Eric (fever and all). I'm pleased to hear that your twitching has gone away though. Sounds like the antibiotics are working! There was a lady from the Braintalk forums that had similar symptoms for quite a while and started taking antibiotics with a vast improvement. She is convinced she has Lyme, I think she's right.

Do you have perceived weakness or actual muscle weakness? I am assuming with Lyme you would get actual weakness, am I right? I may have some mild weakness but if there is, it's very mild at this point. I can't say my illness has been progressive but it has not gotten a lot better, that's for sure. I also have pain, which is not real typical with BFS although I know some have it.

Thanks a lot for your help. I am seeing my internist tomorrow and I will ask him about seeing a specialist. Take care and I hope you continue to see improvement, I will be keeping my fingers crossed for you.

Zach
I had perceived weekness in the calfs, but I waited too long and they started too atrophy, now they dont feel week and they stopped atrophing after the first week of antibiotics. I always believed that fasciculations were not benign i believed that something was causing the imbalance and in my case i was right. im getting much better but it takes time. this fever is from the die off of the lyme bacteria and is considered to be important in that the antibiotic is working.
eric
eric
Hero
Hero
 
Posts: 353
Joined: June 3rd, 2003, 7:52 pm
Location: long island

Re: New to the forum

Sponsor

Sponsor
 


Return to Experiences with BFS

Who is online

Users browsing this forum: No registered users and 5 guests