Fear Fear FEAR! Help me with my fear!

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Fear Fear FEAR! Help me with my fear!

Postby Lu Ann on October 5th, 2003, 9:38 pm

Hello all.

Thanks to a very wonderful person (Thanks Gary!!) I found this board. I too am petrified of having ALS.

I am a 34 year old female. Two months ago, I experienced numbnes/tingling in my arms and legs. Of course, I got on the internet, and researched this symptom, and MS and ALS came up. After reading about a symptom of ALS, I discovered I had more symptoms than I thought. Each day it seemed I would get a new symptom. As of today (three months into this) I have the twitching, all over my body. Sometimes a lot, sometimes not a lot. The tingling comes and goes--gets worse at night. My muscles are tight, and they ache. I have had cramps in my right calf. My joints crack a lot more now. In fact, when my wrists ache (from typing this) and the only thing that makes it feel better is if I "crack" it--if that makes sense.

I have had an MRI that was clean. And a clean neuro exam. I have an appointment to see a Rheumatologist this week. And, if that is clean, I am going to get the dreaded EMG test--which I am petrified about.

My Neuro put me on anti-depressants because I am freaking out so much. I am not sleeping much these days, and I cry so easily. I keep thinking I am going to die and leave my two toddlers. :cry:
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Postby John on October 5th, 2003, 11:21 pm

Hello Lu Ann

I know how hard this can be at first ,and it is a vicous cycle that you can go through .What the human mind can do to the human body is simply amazing ,and we with BFS are testiments to that . You can make your symptoms worse with out even realising it. I'm sure we all started looking on the internet at first sighns of symptoms and, YES those thee little letters so small and innocent by them selves come up on our screen,but when put in a certain order they become a weight that will pull you down even further .
IT is easy to get caught up thinking my legs are weaker ,or one is smaller than the other, but odds are one was smaller or weaker to begin with and you just never had any reason to look before . We are not built on an assembly line where every part is perfect .
Trust in you neuro he knows what he is talking about . I have'nt had an EMG but I know that what I have is benign and I feel confident you are fine .
I have been down the road of depression and I know how hard it can be to see ahead ,but it will get better ,trust me . I would cry at the drop of a hat ,and was allmost to the point where I literally could not function .
Take controll of your life now in what ever means you have to ,the anti depressants along with the suport of my best friend who had been down the same road realy helped me.
You owe it to your children to give them all the love you can .

Do some reading here and I think it may help some of you fears.
Read Arrons posts .

Welcome, we are here when you need us

John :)
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Postby Jenn311 on October 6th, 2003, 12:23 am

Great post John.

Lu Ann.....you sound like a totally classic case of BFS. Mine started out five years ago with tingling and numbness, too! In fact, I read somewhere a long time ago that BFS typically starts out with tingling and numbness, though I don't think the majority of people here would agree....though I am sure some have had a similar experience.

You have got to get ahold of your fear of ALS! For your kids sake, they need their mommy. If you had a clean bill of health from a neuro, then you have NO reason to fear an EMG....if you were in the early stages of ALS there is no way you would have had a clean neuro exam. So you should feel much more at ease now that you have found a crowd that can totally relate with your suffering, which like many of us, is mainly the anxiety. It will take you a while to get over this and to accept your diagnosis as benign....but one day you will, and then you can get back to living a normal, albeit twitchy, life.

Best of luck, and welcome!
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Postby twitching man on October 6th, 2003, 9:30 am

Lu Ann- I went through the exact same thing twitching, numbness, tingling, aches and pains. The numbness and tingling went away but will show up again for a day or so in my feet and then it goes away. The thing that is similiar to you is my joints, I have that same feeling in my hands when i wake up in the morning my fingers feel swollen and stiff, after awhile they loosen up and feel better but I also feel like I have to crack them and after they feel better. I was checked for arthiritis by rheumatologist and he didn't think I have arthiritis. So I amtrying to treat with gloucosimime and condroytin. I think thats gow you spell those words.
Anyways good luck I think the more your on this site you will find out alot of people have similiar symptoms.
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Thanks!

Postby Lu Ann on October 6th, 2003, 12:16 pm

Thanks for responding everyone, but my fear is still there. I have so many more symptoms than you all do--not just twitching. If anyone out here has the dreaded disease, it is probably me. I have no friends (new to this area) and no family nearby. My husband is sick of hearing me talk about this, so I just don't talk to him about this anymore. Friends that do call me are walking on eggshells, so I don't bother to call them back anymore. Who wants to be friends with a person that cries all of the time? I wouldn't either.

Just imagining who in the world would be my caregiver...if my husband can't handle this part of it, how would he handle the bad stuff--if it turns out to be bad.

Sorry to be such a downer.
:(
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Postby Jenn311 on October 6th, 2003, 12:37 pm

LA...

I really don't think you have more symptoms than anyone else here. You should spend some time doing a little more reading...I myself have had every one of the symptoms you are describing, and more. So have many other long time BFSers.

If one day, you can't pick up your toothbrush to brush your teeth, or get out of bed because your muscles just aren't working, then you would be right to be afraid. You need to see a therapist if your quality of life has become so bad. If you keep telling yourself you have a horrible disease, then you might as well have one. But until you get diagnosed with something bad, you are just causing yourself and those around you unnessecary stress.

Another thing to keep in mind is that the hormone adrenaline seems to play a big part in the twitching and cramping, as it is a powerful neuro-transmitter. If you can bring your stress under control, and your adrenaline levels go down, then you will find that your symptoms are reduced dramatically. As for the joint problems, I had the same thing, though those have been remissive for a while. My Dr. tested me for Lupus, but the test was negative. I did have a high Rh Factor, but it came down as well. Muscle aches are common as well...as is fatigue. And tremors, and perceived weakness....the list goes on. Like I said, spend some time on this site just reading, and you will find many, many similar stories to yours.

Try to reduce your anxiety!
Best of luck!
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Postby John on October 6th, 2003, 12:41 pm

I was exactly where you are now .People would avoid me from fear of saying the wrong thing to upset me and make me cry . And i would avoid them because of the same reasons you are saying ,but you are reaching out for help and that is good . The anti depressants will take alittle time before you start feeling much effect ,but you have to do some work on you fears yourself. Talk to a Preacher a phycologist anyone who will listen.If it will help stay off the other internet sites ,I did not start posting here untill I was sure what I had was benigh.

We will be here if you need us.
John :)
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Postby fastpage on October 6th, 2003, 12:43 pm

Classic case of BFS, I think. Your symptoms mimic mine almost exactly. It may just take time for you to overcome your fears. It took me a couple of months which included nerve conduction studies, EMG, and numerous blood tests. I twitch just as much as before, but I hardly think about it anymore. These tests are your friends-they will eliminate your fears if you will believe the results. There is nothing to an EMG-it was not even uncmfortable. Keep telling yourself (out loud if necessary) that ALS is exceedingly rare at an older age and even rarer in someone your age and essentially nonexistant with clean tests. You are OK
No man has a right to live who has not in his soul the power to die nobly for a great cause. --Theodore Roosevelt.
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Postby nickic on October 6th, 2003, 1:14 pm

I have to say that your symptoms are exactly how mine started. I was terrified that I had either MS or ALS but 5 months on with no weakness and having had acupuncture and being on Zoloft I feel much better. I have not had an EMG as I have had 4 clean neuro exams and they don't feel it is necessary. I am sure that if your doctor or neuro was in any doubt that you had something to worry about they would be sending you off immediately to have the tests as it would be their butt (American term) on the line. Also my muscles ache to buggery occasionally and my joints crack a lot more and I am fatigued etc etc etc... however I can still carry heavy things, I can still run, I can still type - in fact I can do everything that I've always been able to do. Surely if I had something serious or if you had something serious then you would know about it!!! What you have is benign... I had a total freak last week as I thought that one calf muscle was smaller than the other... it isn't!! It was just me freaking out so don't worry we are all in the same boat and we are all fine!!

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Sorry!

Postby Lu Ann on October 6th, 2003, 1:43 pm

Hi.

Sorry to be such a freak everyone. I try so hard each day just to keep it together....to take care of my kids and my husband...and to fake a smile on my face half of the time. Some days are good---most days are bad. I am just so scared. Thank you for listening and taking the time to respond.

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Postby garym on October 6th, 2003, 3:23 pm

Lu Ann,

I'm so glad that you have come to the forum. I think you will find some great support here. I'm also available for you any time. I just had a neuro appt. today (follow up for meds.), and am suffering from the anxiety of the visit. He is going to run some test again (creatine kinase and others) because of the throat thing, and wants me to come back in 6 weeks. Said he would call if anything comes back abnormal.
I have been doing so good the past several days since my second opinion last Thursday, but for some reason i'm feeling all screwed up again after this visit. Oh well, it's time to get it back together!
One last thing, the dr. told me today that he had never seen a person with BFS that didn't suffer from anxiety. He said anxiety doesn't cause it, but it's always a result of the fascics. I found that quite a relief, maybe I'm not going crazy :lol: .

Gary (ggmab)

P.S. - There's no need to apologize for your feelings. Everyone on this forum has been where you are at one time or another.
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Postby garym on October 6th, 2003, 3:24 pm

Lu Ann,

I'm so glad that you have come to the forum. I think you will find some great support here. I'm also available for you any time. I just had a neuro appt. today (follow up for meds.), and am suffering from the anxiety of the visit. He is going to run some test again (creatine kinase and others) because of the throat thing, and wants me to come back in 6 weeks. Said he would call if anything comes back abnormal.
I have been doing so good the past several days since my second opinion last Thursday, but for some reason i'm feeling all screwed up again after this visit. Oh well, it's time to get it back together!
One last thing, the dr. told me today that he had never seen a person with BFS that didn't suffer from anxiety. He said anxiety doesn't cause it, but it's always a result of the fascics. I found that quite a relief, maybe I'm not going crazy :lol: .

Gary (ggmab)

P.S. - There's no need to apologize for your feelings. Everyone on this forum has been where you are at one time or another.
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Postby Greata on October 8th, 2003, 5:32 pm

LuAnn,
I, too, suffer from most of the symptoms you have described. I had a clean EMG and neuro exam 10 days after the twitching started in August. My big problem is that a friend of mine was diagnosed with ALS in May, so I have read a lot about it. Little did I know that 3 months later, I was going to start twiching. { I am still convinced it is viral, as I was quite ill, 2 weeks prior to the onset}. The reality is BFS is the most annoying and frustrating condition because it never lets you forget. Even when I am happy, if I stop and relax or lay down at night, I feel the buzzing and uncontolled muscle movements/twitching and the fear creeps back...which causes more twitching. I have tried Acupuncture and vitamins..not sure if it is helping. To me, unless these *beep* things go away, nothing is helping. I lived 45 years without this condition, and I am angry that I have it.

However, my friend is a handsome, athletic, 43 year old father of 2 {ages 6 and 10} and he HAS ALS. He will die sometime in the next 2-5 years in a VERY nasty way. Further more, his 2 children now have a 50% chance of acquiring the illness, as his father died from ALS at 62 years old. {FALS which means familial ALS which increases the liklihood from 10% to 50%...yikes!!}This is the bad news. :cry:

The good news is that I have spent a lot of time talking with him, and I do know that he {and everyone else he has encountered in support groups both local and on line} experienced pronounced weakness first. Yes he does have twitching, BUT he was noticeably weak on the left side, both his arm and leg, before it started. Weak to the point he could not get up water skiing, an activity he has done all his life. His EMG tests were funky{ they called them inconclusive} from the beginning. Also he has had ZERO pain , which could change down the road, but is not an early sign. Body changes occur each week, but he is doing better than we thought he would and his focus is on a HUGE crusade to fundraise for a cure. [Especially for his children}

I am not undermining your fear..it is real, and I share it with you every day. However, we need to have confidence in our doctors. Go get the EMG, it should help your spirits, and more importantly go enjoy your family. I am working hard to do the same. Pray for my friend...Thanks.

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Postby Floater on October 8th, 2003, 7:16 pm

hey lu ann....youll be just fine......you are the rare some of us that have a joint cracking problem.....with bfs i to have all over joint popping and cracking...its really weird that they crack with the slightest movement....it was really bad at first but about 6 months later the cracking is almost gone..mainly i have them in my shoulders and knees still...but not much anymore
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