My Story-Pack a Lunch

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

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My Story-Pack a Lunch

Postby Bree on October 1st, 2004, 7:10 pm

Hi, everyone! I’ve been monitoring for the last two months but hesitated to post my story as it is so similar to others. Then I realized that when I found this site it was the similarity in everyone’s symptoms that I found so reassuring, so…….Once upon a time in a dentist’s office far, far away…….but really, back in June I went to the dentist for a sensitive tooth and ended up with a week’s worth of E-mycin and a root canal. The procedure went well, but when the numbness wore off the tooth felt bruised and my cheek above the site was tingling. The dentist told me that wasn’t unusual and might take time to go away (it didn’t). Ten days later I was watching TV and noticed twitching in my calves and the tops of my feet. Some were visible and pretty intense. I’d been mowing and doing yard work in the heat all day and thought I might be dehydrated so I didn’t worry too much. I woke up the next morning (still twitching) feeling lousy—headache, low-grade fever, nausea, loss of appetite and felt exhausted. That lasted about three days and then everything left EXCEPT the twitching. I thought it was probably all connected and just might take a while to clear up and so I gave it some time.

Two weeks later I was really getting worried and called my GP. He did the usual balance, reflex and strength tests, said everything appeared normal and asked if I was under stress (yes-kind of a hard year). He decided to do the blood work we’ve all had—thyroid, diabetes, magnesium, B-12, folic acid, etc. Three days later I got a card from him saying everything was normal and telling me to call him if I wanted something for stress (I didn’t). That upset me because I was hoping for a quick fix. About a week later the twitching started to spread—hips to feet and shoulders to fingertips. Now I’m freaking out. My husband and I went to a movie on Saturday and I couldn’t sit still it was so bad. I went home that evening and called my doctor’s service. They talked to him and called me back and said he wanted to see me Sunday morning at his office (great guy). He did all the tests again and said everything still seemed normal but he thought I should see a Neuro since it appeared to be getting worse. He asked again if I wanted anything for stress, and I ended up with Xanax so I could sleep at night (.5 at bedtime). His office called me Monday and got me in to see a really great Neurologist on Wednesday (what are the odds?). He did extensive strength, balance and reflex testing and asked a ton of questions. He told me I definitely did not have ALS, but he wanted to do testing to rule out MS and some other things. While I was there I got the blood work to test for lyme, heavy metals, toxins, and some others that I can’t remember. When I got home I got a call from the hospital asking me to come back the next day for an MRI of my brain and C-spine (with and without contrast), visual evoked potential testing and somatosensory testing on both arms and legs. My GP later told me he couldn’t have gotten his own mother in so fast. Then, unbelievably, he called the next day (Friday) with the results. It was a good thing because I was so scared I was barely functional. He said all the tests showed no sign of disease. My brain had a couple of lesions (probably from migraines), but the thing he was most concerned about were two bulging discs at C5 and C6. He said they were so bad he talked to a surgeon before calling me. I knew there was a problem there because a get burning between my shoulder blades and sometimes lose fine motor skills. I just go to a chiropractor once or twice a year. He said if I wasn’t bothered, then we would just not worry about it. He said he really wasn’t sure why I was twitching, but he felt it could be Restless Leg Syndrome and my arm problems could be from the discs. I didn’t question him, but I was sure that wasn’t it. I was still basking in the glow of my “normal test results”. He told me if the Xanax was helping then I should continue to take it and he also felt I had some “stress” issues. He said our minds could do some nasty things to us. Amen, brother.

I decided to just wait and see what would happen next. I didn’t have to wait long. Within two weeks the twitching went full body. I had them EVERYWHERE. Besides that I had electrical sensations and buzzing in my legs, numbness in both shins and two toes on my left foot, tingling off and on in arms and legs, a feeling in different spots that felt like a tight rubber band, areas on my legs that would get hot and then I’d get spells of shivering from head to toe. But the worst was one morning when I went back to bed after my husband went to work. I woke up and wondering why the bed was shaking and then realized it was my chest. The whole thing was vibrating up and down. I put my hand over my heart but it was beating normally. OK, now I’m thinking by this time next year I’m going to be on the wrong side of the dirt. The doctor has obviously missed something. This was when I found the “evil” website. I’m sure I have “it”. It must have just been too soon to find it on a test. Then my tongue started twitching. I was convinced this had to be in my head until I went to a mirror. That did it. I decided the next morning I would call the doctor again. But when I woke up, the tingling I’d had since my root canal had turned into a painful drawing, pulling sensation so I called the dentist instead. All along I was wondering if there was a connection (still am). He said it sounded like the root canal never “took” and gave me an appointment in five days. In the meantime he started me on ten days of Clindamycin (sp?).

While I was waiting to see him, I decided to Google tongue twitching and somehow found this site. Only those of you who have been through this paralyzing fear know what a relief that was. I knew immediately that I’d found what was wrong with me. When I went to the dentist, he said the root canal HAD gone toes up and pulled it. I immediately felt better but then didn’t know if it was from the tooth or because I was starting to relax. Whatever, I’ll take it. Since then my symptoms have nearly disappeared. At the moment, I’m just having some minor twitching. Annoying, but livable.

Thanks to everyone who (unknowingly) helped me for the past two months. I find your support for one another very moving. You’re doing a VERY good thing.

Bree


”Do not be conquered by the evil, but keep conquering the evil with the good.”
Bree
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Postby LeeNC on October 2nd, 2004, 2:52 pm

Great post, Bree.

That is impressive, that you got in to the Neuro so quickly. And isn't it reassuring to know all the stuff that's NOT wrong with you, after getting so much bloodwork, etc.

I was leaning toward a viral cause, but at least in your case it sounds like your BFS might have had a bacterial cause.

Glad you are almost symptom-free. Wishing we all were!

--LeeNC
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Postby Stephanie on October 2nd, 2004, 4:15 pm

glad you're better now. Sounds like a roller coaster ride! I also have a few lesions that they thought was from childhood migraines. Keep us posted!
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Postby Bree on October 2nd, 2004, 7:34 pm

Lee and Stephanie-Thanks for responding! I would love to think that this was going to just fade away, but as I'm writing this I'm having numbness and tingling in my right foot. From everything I've read here, this seems to be the norm.

What I find really annoying is not being able to determine a definite cause. I'm sure you all feel the same way. And I think it's interesting that so many people in the medical profession have developed this. I also have a connection in that way. I finished medical transcriptionist training just four months before this started. Maybe a "little knowledge" IS a dangerous thing.

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Postby Jenn311 on October 2nd, 2004, 10:03 pm

Wow Bree...

So you went through that root canal for NOTHING? WHat a bummer. Glad you found this site. I know what a relief if is knowing you can commiserate with equally afflicted folk.

Take care,

J
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Postby Bree on October 2nd, 2004, 10:17 pm

J

Yes, just loved the root canal. What worries me now is I have to get an implant to fill the space left. It's noticeable if I smile too wide. The dentist warned me of possible complications-perforated sinus or damage to the teeth on either side which could cause me to need root canals in THOSE teeth. Of course these are long shots but considering the last few months I'm half afraid to let someone fool around with my mouth again.

Decisions, decisions....


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