My Wife's story. What can I do to help my wife mentally?

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My Wife's story. What can I do to help my wife mentally?

Postby ICare on June 10th, 2003, 9:12 am

9/01-9/02
My Wife (22) suffers from what has been diagnosed as BFS. It all started around the horrific date Sept. 11 and about 10 months after she had our beautiful daughter. She started with severe migraine headaches and floaters in her vision. The floaters really scared the crap out of her. Due to the severe pain, she went to the ER and they did the normal routine with several internists coming in and out and explaining herself to about 20 different people (Don’t you just hate that). The ER Doc said she was having migraine headaches and gave her some medication to help her with the pain. A few days later my wife was not at all satisfied with the diagnosis and wanted answers quickly because she knew that visionary problems are not normal. Well, trying to get an appointment with the neurologist quickly is almost impossible so we went back to the ER to admit her. The visionary specialist was not going to be in till the following day and the internist took over. He had done some simple eye test and my wife was asking all sorts of questions and he would pull out his PDA to answer them. The next morning she had her MRI and spoke with the visionary specialist. The MRI was normal and her vision was perfectly fine. My wife decided to live with her migraines. A couple weeks later my wife started having muscle spasms around her legs which would keep her from having a restful sleep and this worked on her for so long she decided to see the neurologist. Painfully enough we had to go to our PCP who listened to my wife and told her she was stressing about the recent events and our new baby (Typical-it is not just stress). The PCP gave us the referral because she knew we were not leaving until we got it. We scheduled an appointment (took 1month) and talked with the neuro. He listened and prescribed her some medication to help her sleep at night and scheduled a follow-up. When we went to my wife’s follow-up she was still twitching and spasms and asked all the questions, is it Parkinson’s, ALS, MS and so forth. The doctor said it is none of these with full confidence. My wife was still uneasy so he performed an EMG for her added confidence and it was normal. He said it is BFS. Our Neurologist was what I called the grandfather of medicine because he knew it all and wrote several books. He kept reassuring my wife that her constant twitching and muscle spasms were benign and not fatal nor any of the terrible diseases associated with it. He then prescribed clonopin and scheduled follow-ups every month. Everything went well for about a 1 year (still the normal BFS symptoms) and she decided not to take the clonopin anymore. She wanted to start over and not rely on meds to help her live her life. We just moved in to our newly built home and wanted to give it a shot. She has been doing great, although I know she doesn’t tell me about her daily spasms and twitches, her mind seemed to be coping much better with BFS.
I also would like to add that the migraines have pretty much ceased and the floaters in her vision are not as apparent.

6/2003
She still has the same symptoms many of you have talked about. Worm like feelings in her feet, sometimes twitches by her knees and thighs all occurring daily. I usually massage the areas and that really relaxes her. I have noticed considerable improvement in the frequency of twitching and spasms. My wife is very smart and will search for the fine print on BFS and sometimes I think she is doing more harm than good. Lately she has had a muscle spasm between her thumb and finger. I can see the muscle pulsating. Have any of you had this? It does not hinder her in any way at all. She has had this for about 5 days now. I have been massaging the area and that helps her a lot. Since this area is kind of new she has been searching under “finger twitching” and “hand spasms” on the net. Some of the links lead to Parkinson’s. She has been really scared. I keep assuring her not worry, but I’m on the outside looking in. I care so much about her wellness it kills me to think that this is all she thinks about this on a day to day basis when I’m at work. I keep telling her that she is working herself up and needs to relax, but how can I say this when I’m not going through it. We have since moved because of a job transfer and she has to start over with a new neurologist, which I’m positive will conclude it is BFS.
The best part about this is she has had significant improvement over the 2 year period, discontinued the use of meds, and sleeps great.

To all of you who suffer from this, I know it is tough and I want to know what you would ask of your spouse, friend, parents etc. to help you mentally through this. I ask you guys to please post messages to my wife that can prove to her she has friends in the same situation with the same problems and that BFS is a disease.

Thank you so much for your help. I will continue to post messages on my wife’s follow-ups and keep you posted on any news that can help.

I'd like to add that I have pretty much have all the same affected areas as far as twitching, muscle spasms, tingling etc. are concerned. I have noticed them more since my wife has had them and I get them everyday just not on the same frequency level as BFS sufferers.

Sincerely,

ICare :D
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Hey there

Postby KERRI on June 10th, 2003, 11:31 am

Hi,
You asked what we ask of our spouses or loved ones, I say this, tough love is the key, she is way past the one year point and has had times of improvement, this means the worst is very very likely to be behind her. My fiance has been to every doctors appointment and in the begining he was convinced that it was real and the doctors were idiots, but we have seen some of the best docs and they cannot all be idiots. You must stop her from researching the net, my fiance threatened to disconnect access if I did so, so I only come here, because I promised him that. He has gotton real tough, everytime he gets a twitch he shows me or tells me and so does my best friend, they are trying to prove me wrong not fuel the fear. This works be there for her but be tough, she is tooooooo young to worry about this, have her talk to some people on here trust me, these people are the best medicine for someone diagnosed with BFS, some of the best people I have have encountered are here, they care and they tell you like it is.


GOOD LUCK, You are both going to make it through this, just keep massaging her twitches and telling her, it is going to be okay, and call her during the day to get her mind off of herself and on you. My fiance calls me everyday just to make sure I am not on the crazy wagon.

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Postby Jenn311 on June 10th, 2003, 11:57 am

Hey ICare...

That is soooooo touching! Honestly, I was crying reading that! :cry: I would give anything to have someone who cared that much for me!!!! One of the reasons that my first husband and I actually split up because he was so unsupportive of my health anxieties. So you tell your wife that she is a very, very lucky woman. :D

Everything you have described is very consistant with a diagnosis of BFS....which fortunately not at all a progressive disease. In fact over time most people experience a dramatic improvement, but only after they come to terms with their BFS and stop being so stressed out. If your wife has never been in therapy, I would recommend it highly. I don't know where I would be today if I had never recieved therapy. And since you are Superhusband, maybe you could find time to go with her. Her true enemy now isn't the BFS, it's the anxiety that goes along with it, as the two are very closely intertwined in a direct relationship with eachother. Maybe you might talk to her about trying out anti-anxiety or anti-depressant medication. Many people with BFS swear by those.

As for the floaters...as I am sure you know by now, those are totally harmless and tend to increase with age. If you notice a large increase all of a sudden , that could be ominous of a retinal detachment. But that is rare and occurs most often following an injury.

I am also with Kerri on the "surfing-the-web-for-a-quick-diagnosis" theory. Strongly encourage her not to do that. I think those sites need to be reserved for finding out info after you have been diagnosed, rather than the reverse. If doctors know better than to self-diagnose, we should follow their sage examples.

Best of luck and keep us informed!
:D :D :D Jen
PS...Got any cute brothers? (J/K)
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Postby Rich Longer on June 10th, 2003, 1:11 pm

You asked:

"To all of you who suffer from this, I know it is tough and I want to know what you would ask of your spouse, friend, parents etc. to help you mentally through this"

I think the answer is: exactly what you are doing.

my wife helped me through the bad times by being patient and by listening and keeping my feet on the ground. She advised me to give myself some time off - ie to think about whatever was worrying me and then put it aside for a while - sounds silly but it worked for me.

I think the biggest enemy is anxiety - getting things completely out of proportion. Health anxiety can do that to you - you interpret everything as being a sign of the illness and you overlook the obvious - that you are OK, that your doctor told you there is nothing wrong, the fact that ALS is rare, the fact that ALS doens't present as twitching normally etc etc etc.

The fact that you cared enough to post your message is great and there are a lot of nice people in this group who will help keep things in perspective. For me this group was a life saver. I am much better now and I am hoping to put something back into this group.

If your wife has any questions - she should post here and some of us veterans will try to answer them as best we can. However I would always remember this is a support group. We can compare experiences etc, but get the medical advice from the experts.

With best wishes


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Postby ICare on June 12th, 2003, 7:34 am

Thank you so much for the posts. They have really kept my mind and my wife's at ease. This site is truly a life saver. My wife has been looking for people with her similar symptoms. I can't tell you how much this helps my wife and I.

I have been twitching myself for the past week or so (at least I'm beginning to notice) and all over my feet, arms, legs, butttocks,hands a little shaky in the morning, worm like feeling in feet, electrical sensations. The only thing different is that I don't seem to twitch in one area like my wife. It seems like she twitches in one area of her body for a while then moves on.

:?: I would like to ask a few questions :?:

Has anybody had terrible headaches before the onset of BFS :?:

What about after pregnancy :?:

Epidural may cause BFS :?: My wife had the epidural and she had back pain months after the pregnancy in the specific location the shot was given.

Does any body have fasciculations between finger and thumb :?:

What meds can you recommend (side effects of each if known) :?: I read that Paxil has a lot of side effects.


Thank you so much for the support Rich, Jenn, and Kerri.

Thanks for the PM's Aaron and Craig very much appreciated.

I believe having other people discuss the same problems are truly the best medicine, and its free.

Kerri, by the way my brother will be graduating from college in a 1.5 years. Still interested? J/J :lol:

Sincerely,

Eli on behalf of Brooke (I showed my wife the site and your posts. She will create her own ID to talk with you guys).

:P
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Postby Jenn311 on June 12th, 2003, 12:57 pm

Howdy Eli and Brooke,

What cool names you two have! To answer you questions...
There is no typical pattern to the twitching in BFS. You will find, Eli, that as you get further into the twitching, you will have some twitches that stay in one place for a long time (hot spots), and some that are fleeting, never to recur in the same place again (or not for a long time, anyway...). BFS seems to be completely random.

As for the question about pregnancy....I had a baby 6 months before my twitching started, almost 5 yrs ago. I have seen other women that have written in that have babies, too. So there may be some kind of either hormonal connection, or it's tied to the stress of having a little one... Who knows. I didn't have an epidural though, so I don't know if those two could be related, but I guess it could, as the shot goes into the spine, which is a main part of your CNS.

Btw. the thumb and forefinger.....YES! That is a common place. In Bfs, anywhere can twitch. I even get eardrum twitches.

Well, Welcome to the wide, (not-so) wonderful (but not so bad either, ) world of BFS.
Cheers!
~jen
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Postby Rich Longer on June 12th, 2003, 3:45 pm

You asked

"Has anybody had terrible headaches before the onset of BFS

What about after pregnancy

Epidural may cause BFS My wife had the epidural and she had back pain months after the pregnancy in the specific location the shot was given.

Does any body have fasciculations between finger and thumb

What meds can you recommend (side effects of each if known) I read that Paxil has a lot of side effects. "

I can only answer a few of these

headaches - no not in my case i haven't seen posts about this but people do report a viral illness - I think the Mayo study mentioned it. Viruses can give headaches so maybe thats a link.

Pregnancy -and epidural - don't know

facsics between finger and thumb - yes very common - I got them a lot and also in the thumb muscle

I have not found any medication helpful. Alcohol gets rid of them but they come back with a vengeance the next day if you overdo it. SSRIs for me were a total nightmare they made twitching worse and made me feel dreadful - I gave up almost as soon as starting. My honest view from reading this site is that nothing works, but treatment for anxiety seems to help some people.

The best thing for me was:

1) trying to not think about all the things thatworried me
2) getting lots of sleep
3) the odd beer or three!
4) Accepting thatI will twitch today tomorrow next week and next year and maybe next decade.
5) Going back to the things i like doing - in my case kayaking and not worrying if exercise causes twitching afterwards. It usually does.

hope things get better for you both

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what helped me!

Postby izzie on June 15th, 2003, 3:12 pm

Hi Eli and Brooke,
I don`t come on the site much these days as my symptoms are almost gone, but I wanderede on this pm and thought I would share my experience with you in the hope that it will help you.
I must first say that I found this site a godsend, it started me on the road to recovery and the support I received from so many people was invaluable and I will always be grateful. I hope you will continue to find it helpful.
I think I was helped by the combination of the following:
Reappraising my life and getting a balance back into it.
Psychological help to deal with my health related anxiety
Low dose SSRI antidepressant, I know most people on the site knock them but I take 50% usual dose and suffer no side effects. Initially I felt more anxious but that quickly passed and I feel much better.
Multi vitamins and evening primrose oil
Regular alcohol in small doses
Mild exercise and stretching
Listening to my body and resting when I feel fatigued
Physio for muscle spasm.
Good luck and the secret is to relax and enjoy life
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what helped me!

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