Carol's Story...you won't believe it!

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Carol's Story...you won't believe it!

Postby Carolmarie on March 18th, 2003, 2:00 pm

I am Carol in Maryland. I have been twitching since Thursday, 9/12/02. My husband (Steve) and I were sitting in our living room that evening watching TV. I had just taken a shower and sat in the recliner for a relaxing evening. All of a sudden, ALL OF THE NERVES in my lower legs and feet began to flutter and twitch. I was scared to death as were you! I got up to walk and had a stabbing pain in my left calf and fell to the floor. Then my feet and ankles started spasming and it actually looked like something out of the Excorcist. My feet were twisting around involuntarily and the arches were spasming. It was horrible! I didn't know whether to go to the emergency room or what! I called my parents too. Since my MD isn't very accessible (he isn't in on Fridays or Mondays) we called a friend of ours who is the best chiropractor in our area. He said to come right over in the a.m. I did, he examined me, and I had an MRI of the brain all within that morning, Friday the 13th of all days. The diagnostician at the MRI Center showed me the films and spots on my brain. He said he couldn't tell me if it was or wasn't MS -- that's what I was thinking at the time. Also, prior to this attack I had a dull headache everyday for two months that didn't respond to Advil or Aleve. I reported this to my MD at a prior visit and he never took me seriously. Plus, I had been having trouble with my eyes since May. They became very, very red and inflamed so much so that I had to quit wearing my contacts. Well the correlation of these three symptoms = MS. I have an acquaintance who has MS and I called her. This is exactly how her MS started, twitching, headaches, eye problems! I just became unglued. My chiro's office tried to get me into a neurology clinic in Virginia but there was a month wait. I finally got an appt at WVU in Morgantown but it was 2 weeks away!! I couldn't get in anyplace locally for at least a month. In the meantime my mom talked me into going to the emergency room to see if I could at least get my foot in the door with a doctor. Well, we sat there one evening for about 4 hours with all the goons coughing and hacking. I saw a really nice dr. He said that I needed to see a neuro within the next day or two. He gave me a list of names. There was one on there I hadn't called so I tried him the next day. I got an appt the very next day! He spent an hour and half with me, did EMG test, etc. all normal. At that point in time he was calling it radiculopathy due to a lower back problem and gave me Neuronton to take. I was somewhat satisfied with that but then I thought, wait a minute, why am I twitching above the waste if this is a lower back problem? So I kept taking the Neuronton and when I went back 2 weeks later, I reminded him about the headaches and eye irritation. Well, typical...when they don't know, they prescribe and that's what he did. He tried to give me every migraine pill, anti-anxiety pill that was made. I kept saying no. no. no. I left there disgusted and the hell of it is, I'm still making payments. This was in October. When I got a copy of his notes for another appt, he had me listed as having ______. (Some word that starts with an "S" that means a disorder brought on by getting medical info and then imagining that you have the symptoms.) When I read that, I could have exploded I was so mad. I went to my appt at WVU and saw a young neuro who was so full of himself it was disgusting. He looked at my MRI, or should say glanced, made a flippant remark about chiropractors, did a brief neuro exam and said, well, you don't have MS and that was the end of it. He didn't offer any further testing or anything. And I paid $450 for that. I was going on zero to two hours of sleep a night because I was so distraught and trying to work at my job as a secretary with a plastic smile on my face each day. Somewhere along the line, I saw my husband's doctor too and he gave me a prescrip for Effexor an anti-depressant! He said the twitching was stress! Also, whilst running to all these other doctors, I am going to eye doctors trying to find out what is causing the pain and irritation in my eyes that had been going on since May. Eventually, I did see another neuro in our town who diagnosed BFS. When I went for my first visit, I started out by saying: Doctor, My test results do not support anything I am about to say, so please don't think I have lost my mind. I then proceeded to tell him about the twitching, etc. He was very receptive and understanding. After three months, I finally got the diagnosis of BFS. The white spots on my brain were NOT indicative of MS, but are call unidentified white spots which 7 out of 10 people have. I finally got a diagnosis for my eye problem that 3 MD's, 3 Neurologists, 2 optometrists and the top opthalmologist in our town couldn't diagnose: I have occular rosacea which is in no way connected to BFS. I got my diagnosis at the Eye Clinic at WVU and was treated for 8 weeks with doxycycline. As for the headaches I had two months prior to the twitching...I just believe that was part of the onset of BFS. In the meantime, my husband has a nervous breakdown and develops agoraphobia with panic disorder so I haven't burdened him with my BFS, etc. That's a whole 'nother story in itself! Add 2+2 and get four. Medical bills and husband off on medical leave. The added financial stress does aggravate the twitching but I'm coping! Maybe I could have a bake sale.
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S???

Postby Davey on June 19th, 2003, 4:35 pm

Somatization disorder, most likely.
Cheers,

Dave

Proud sufferer of Cramp-Fasciculation Syndrome since June 2001.

"Do not fear death tomorrow so much that you forget to live today."
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Somatization

Postby Carolmarie on June 21st, 2003, 4:48 pm

The diagnosis of "somatization" was given me by the 2ND neurologist I saw. My 9 months of twitching has been diagnosed as ALS. It has affected my throat (swallowing) and breathing. So much for Aaron's reassurances and research. I don't know how much time I have left.
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Re: Somatization

Postby KERRI on June 21st, 2003, 5:08 pm

Carolmarie wrote:The diagnosis of "somatization" was given me by the 2ND neurologist I saw. My 9 months of twitching has been diagnosed as ALS. It has affected my throat (swallowing) and breathing. So much for Aaron's reassurances and research. I don't know how much time I have left.


Are you for real you have als

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AM I THE ONLY ONE WHO READ THIS POST

Postby KERRI on June 21st, 2003, 8:51 pm

She started twitching around the same time as me.

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Postby Jenn311 on June 21st, 2003, 9:21 pm

Wow Carole...

When were you diagnosed with ALS? How were you diagnosed? Let us know!
You are in my prayers!
~Jen
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Kerri

Postby Brian_B on June 22nd, 2003, 1:26 am

not to insult her in any way but if you read her posts she didnt go to doctors because of twitching alone, she went because of various other symptoms, and even said in the post symptoms that are NOT related to a diagnosis of BFS.

the severe leg cramps like she had are an indication of ALS combined with the other symptoms she had.

she also said she has breathing and swallowing problems, which also are NOT a symptoms of BFS.
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p.s.

Postby Brian_B on June 22nd, 2003, 1:37 am

no offense but that would make you the first person in the history of the world to have ALS with a normal EMG, and since Im a natural skeptic I have a hard time believing you are honest about that.
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Postby dwl on June 22nd, 2003, 1:57 am

Not true - there are indeed isolated cases of ALS with the initial emg being normal. As with any medical test, nothing is quite 100%. I guess it was always going to happen, one of our number actually turning out to have als.

Carolmarie, I'm truly sorry to hear your news. I can only wish you strenth and courage for what lies ahead.

Looking back at Caromarie's posts, there were warning signs which in retrospect were all there: difficulty swallowing and muscle wasting.

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Postby Brian_B on June 22nd, 2003, 2:09 am

yeah I went back and read a lot of her posts, and you right, she had other symtoms which indicated ALS instead of BFS.

what Ive read on here, no one has ever had any symptoms like she did(trouble swallowing and breathing and atrophy) and had only BFS.

for those like me who have twitched for a year and half and had no other symptoms shouldnt worry about it being anything else


also read the mayo clinic study, no one on it had or got ALS that didnt have any other symptoms that suggested ALS and then got ALS.

I also believe that she never said any doctor diagnosed her with BFS.

the last line of the mayo clinic study is

Conclusion
The syndrome of benign fasciculation, often associated with muscle cramps, appears to be a distinct entity. The historical data suggest that it is multifactorial in origin. The important conclusion is that if the physical examination is normal and the EMG studies are normal or do not suggest motor neuron disease, the patient can be reassured of a completely benign prognosis.


obviously trouble swallowing and breathing and atrophy is NOT a normal physical exam
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p.s.

Postby Brian_B on June 22nd, 2003, 2:32 am

I realize that was rude to say I didnt believe you, I sometimes tend to say something without thinking it through

if you have ALS, Im sorry, you will be in my prayers as well.

no idea how long it would take to do more ALS research, but I know using stem cells they can cure ALS in mice now, so hopefully matter of time until they can use stem cells to cure it in humans as well.
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Postby dave YY on June 22nd, 2003, 3:14 am

I'm terribly sorry to hear that news Carol.

If you can find the courage, or the patience, please fill us in on what has happened from the beginning, as I think your story might prove to be controvorsial.

When was your normal EMG, and was it completely normal, or was other wording used such as "inconclusive" or something? Did you have atrophy and trouble swallowing before that first EMG? Have you since then had an EMG and met the diagnostic critereon for ALS? Do you feel your first examinations were thorough and taking you seriously? Sorry to be so nosy, but I think it is unclear from your posts and we're going to be concerned.

DWL-- The poster was talking about clean EMGs for TWITCHING going on to become ALS. There seems to be no measureable incidence of that happening on this forum or the Braintalk forum apparently, and also according to the Mayo study and many ALS specialists. Yes there are occasions on your typical onset ALS when that happens, especially with bulbar onset, but the big difference is that those cases seem not to involve twitching as the only symptom. Widespread twitching signals widespread nerve death and therefore should be detectable on EMG.

That is why the facts of Carol's case must be understood fully, because she may be the first person on either forum to pass those tests.
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Postby Brian_B on June 22nd, 2003, 3:20 am

since she said she had atrophy and difficulty swallowing and breathing she wouldnt have a "normal" physical exam

also notice that her atrophy was evident in a relatively short amount of time
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Postby dave YY on June 22nd, 2003, 3:32 am

Read her post, above. She had a "normal" neuro exam including an EMG. Really, more than one. And a dx of BFS. Also, I think the atrophy was several months after twitching started. As of now I don't think Carol's story can be so easily explained away. This goes against the Mayo study and conventional wisdom about BFS.

I think from the timeline she started with twitching first, had a couple normal neuro exams one including an EMG, and later started having the swallowing and atrophy problems. However we don't know what's transpired since she noticed the atrophy.

One more question Carol, about the EMG, did it include sticking needles into the muscles, or was it only the shocks?

Sorry to be so persistant, and we all hope it's a mistaken dx.
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Postby uber on June 22nd, 2003, 12:49 pm

I cant even come close to feeling how you must feel right now Carol....months and months of stress then at the end of it getting the worst diagnosis you could imagine :(

You are in my prayers Carol...please find the courage to talk to us and we are all here to support you however we can.
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