my story

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my story

Postby barbo36 on April 14th, 2004, 10:00 am

First off I would like to say I have always been a worrier just never about my health like I am now. I also had a extremley stressful past 2 years if not really 18 but here goes. It all started with a twitch in the left side of my stomach it felt rally strange because I have never had a muscle twitch except above my eye. It was differant than the eye twitch it felt like sort of a rolling but as it rolled it kicked out too. It freaked me out! I had no idea what it was at all so my mindwent a little wild I had been having low back pain for a while and I was thinking mabey I had something kidney related since that is the only thing I ever have had. So I went to the doc and she said I had a uti so I took the antibiotic and the pain I had in my lower back was still there and now I had soreness in the lower left part of my stomach so I went back to the doc who then said I had a yeast infection and tenderness on left ovaryso she gave me meds and ordered sono of pelvic area.I forgot to tell you all when this started I was 2 weeks away from vacation with my family and extremley worried I was going to ruin it. I had the sono done and it showed nothing. I still hadf pain in lower left stomach and I didnt know why I knew something was wrong or there would be no pain. I still didnt know what that twitching was in my stomach I didnt even have a name for it. Anyways somewhere along the line I developed a one sided headache and that was scaring me also. My computer was down so I got into my encyclopedias and to make a long story short I thought I either had a brain tumor or kidney probloms. I was so scared.Then one day me and my kids were going over to my parents so I could mow there lawn and it felt like my arms went weak or like the blood drained out of them it scared me but I still left. On the way as I was driving I got this burning sensation from about below my shoulder up through my neck and around my ear it scared the hell out of me and I felt like I was going to pass out. So I took my self to the er. Where they took another sono of pelvic and the doc said it was fine and I asked him why do I have this pain then and he said the only thing he could think of was that I had a muscle spasming there. Also by that time for some reason the whole left side of my body was burning for wich he had no explanation and he said the spot that was originally burning was my trapezius muscle and I had pulled it he could tell. He also said I shouldnt run as much as I do that I was going to mess up my homones and he sent me home with an antiimflammatory. I took one when I got home and went to bed I was tired and had that horrible headache. When I woke up I was so sick to my stomach it was awful I was not relating it to the meds the doc in the e r gave me I related it to whatever was wrong with me.So I went back to my doc and By this time I had on and off periods of weakness feeling faint and panic attacks although I didnt know this because I never had one and knew nothing about them. I asked her if she would test my kidneys before I left and give me something for my nerves as I was shaking and scared she wouldnt give me anything for my nerves but refered me to have my kidneys to get looked at I cant remember the test. The day of the test wasthe day before I left for vacation so I was cutting it close. By the time I went in for the test my visison was blurry and I was thinking it was because I must have a brain tumor. I couldnt have the test done because I was allergic to the dye. So there I was worried tired scared no test. I started having these waves of terror that didnt go away for 1 and a half days I had never fely anything like this in my life. We had left and were on the road for the trip and I thought I was going crazy and then my scalp started twitching wich again I didnt know what it was I thought I had an aneurism or something. I think we were almost there when it felt like something in my neck pulled and the twitching stopped in my scalp and the terror too. I will try to make the rest of this shorter. During vacation I had a pain under my left rib the really bad headache my toes and finger tips started to tingle I had pin *beep* feelings in my eyes I had very upset stomach I was convinced I was losing my vision I pulled my neck muscles a few more times I had numb spots in my face. I shook all over a few times for 5 to 10 minutes and I had probobly 4 more panic attacks oh yeah and that weak feeling in my arms too. It was the most awful vacation of my life. I got home and was relieved to be there but I woke up with my jaw being so sore and tight I couldnt open it hardley. Then my feet cramped up and then I started twitching all over wich took me to the doc again. I told her I was twitching all over and she asked me if it hurt at the time it didnt so I told her no. She noticed me shaking and wanted me to go on prozac I told her no I want a ct scan of the brain wich she agreed to and gave me valium. The ct scan came back normal so she wanted me to take prozac again I said no.Somewhere in between this and my visit to a new doc I had all over muscle twitching I mean all over my tongue my scalp my neck my back my stomack my butt my legs my feet tops and bottoms my hands and private parts, burning sensations, pin pricks, messed up bowels, joints cracking alot,vision messed up, stabbing pains and other things I cant remember all of it.So I got an appointment with another doc who took a look at the list I gave him of symptoms and asked if I was under stress and I said yes about all of this physical stuff going on. He described my personality to a tee and said severe anxiety. I found it so hard to believe because this stuff was 24 7 and I felt so bad.He prescribed me klonopin that I didnt take for a while but eventually I did and still do. To cut the rest of this short I have had 3 cbcs ana test thyroid ra test glucose ct scan of head mri of head and neck x-rays of small joints chest x-ray pap smear and pelvic sono all they have found is mild copd of lungs. I now have all over twitching of differant jkinds joint pain muscle pain little cramps mostley in lower shoulder area joints all pop and crack alot pin pricks little spots that burn it seems like I have tight muscles that pull easily shaking sometimes in differant limbs I jerk once in a while too. Also My period has been twice as long since all this started. I tire very easily and I havent lost strength its just my muscles tire and get sore pretty quickly. I forgot to mention that I was on the computer symptom surfing first brain tumor then ms then als wherer I seem to be stuck it has been 10 months and 4 days. There are probobly things I forgot to put in and I know that this sounds so much like stress the thing I cant get over is it started with my muscle in my stomach twitching. I geuss I have turned into a hypochondriac because I worry all the time about the als and other things now. I would really like all of your opinions and please take into account that before the muscle twitch I was a strong mentally and physically healthy person who did worry but just basically about her kids not about her health, I am wondering if this is stress will it ever go away? The twitching is constant as are the pi pricks and pains and joints popping. Does it sound like als with alot of anxiety or is it bfs with alot of anxiety or is it anxiety? Please help with your ideas. Oh I am 36 if that helps at all. Thankyou for reading this long drawn out drama Barbara
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Postby thetwitchkid on April 14th, 2004, 10:32 am

Barbara:

In reading your story, my non medical opinion is that you have severe anxiety. I say this because your physicians would have found a physical problem if you had one. I have been in the same state as you. I currently take Lexapro and it now helps alot. Keep fighting, it will get better !! If you need to try a different medication, ask for it. Want additional tests, do them. It will help your piece of mind. God bless.
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Postby TheyDon'tBelieveMe on April 15th, 2004, 3:59 am

barbo...I'm not a doctor, but I play one on the Internet. Therefore, I can tell you with almost complete certainty that you do not have ALS. First of all, aside from not having ALS symptoms, the fact that you have so many other symptoms is the greatest indicator that you don't have ALS. In that massive list of symptoms you're experiencing there are probably one or two that are related to something other than anxiety, but they certainly don't indicate disease. You have what we doctors call "changes". Isn't that special?

As for the rest of your symptoms, I hereby diagnose them as anxiety related. You mentioned that you weren't an anxious mess before all this started, so there's a good possibility you can get through this and return to the state you were in before all this. Indeed, you may actually become a better, calmer person than before this scare.

What medications are you currently taking? How long have you been taking them? Do you take them regularly? If not, how often do you take them?
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Postby barbo36 on April 15th, 2004, 8:49 am

I am only taking klonopin. I take 1mg everyday. When you say changes what exactly does that mean? I just keep being told anxiety and I never new anxiety could cause your whole body to go haywire 24\7. The twitching is what really scares me. I try to calm down and not worry and I can manage for about an hour and then the als thing comes back.I really hope you are right about me getting back to normal it would be wonderful. I can tell you this I have become a much better and more understanding person through all this. Any more advice would be so welcome. Thanks, Barb
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Postby thetwitchkid on April 15th, 2004, 9:31 am

Barb:

I began twitching, all over, off and on, but every day in March 2003. I was experiencing sensations of muscle weakness in my thighs and triceps. I was also convinced that I had a terrible disease. Even after my Brain MRI, EMG/NCS and 2 exams by my PCP and 2 by seperate Neuro's I was still convinved that they were wrong and I was right. The twitching and sensations continued. The mind is a powerful thing. I still twitch (much less) but my "obsession" over it is much better. I hope this helps.
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Postby TheyDon'tBelieveMe on April 15th, 2004, 3:32 pm

barb...by "changes" I mean that anxiety or whatever are causing things to happen to you that wouldn't normally happen, but that doesn't mean you have disease. Stress and anxiety really do have a tremendous effect on a person, far more than you realize. In my case, though I know stress isn't the cause of my slurring, nonetheless since I have a propensity for slurring, it's fascinating to see when and how it comes out. I can be in the middle of a phone call, get a call waiting from someone with a serious issue and suddenly I'm slurring, then go back to the previous casual call and my slurring is gone! As for the twitching, I'm absolutely certain that twitching alone is nothing to be concerned about.

You say that you're a much better person because of all this. That's great, I think many of us have realized certain positive outcomes from our ALS scares. Though I'm confident you'll return to a physical state that was similar to what it was before your BFS began, in the meantime you need to calm down and use this period as an opportunity to realize that what makes you a good person is far more than whether you twitch and have other annoying symptoms. It ain't disease and it ain't really limiting you, so you've got to move on with life.

I don't know much about klonopin, but I think it's a benzodiazapine. That WILL help for the anxiety, but you should ask your doctor if it may have some type of rebound effect as it wears off. If it does, then it's important that you not go on and off the klonopin, but that you stay on it continuously, not just on an as needed basis. Discuss it with your doctor.
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