Introducing: BFS Diagnosis Dilemma

[zeynrapple]

Hi,
This is my first post, so I hope it's in the right place.
My partner, who is 43, has BFS. Well, I think he has BFS. He has seen umpteen doctors and only two have mentioned BFS to him. He has been tested for ALS and MS and however many other illnesses there are and all tests have come back negative. He has seen GPs and Neurospecialists and had accupuncture and nobody seems to be able to help.
While the tests for ALS and MS came back negative he has major twitching of his right index finger, muscle spasms around his eyes and in his calves. He gets numbness and tingling in his calves and his forearms.
Please bear with my rambling, I am sorry for going on....but it is so difficult for me as his partner to cope with this. I sometimes think (and I don't mean this badly) that it would be easier if he would have been diagnosed with something, rather than this not knowing what it is. He has a friend who has MS and the fact that it took them 3 years to diagnose her does not help his peace of mind at all. I try so hard to tell him that it will all be ok in the end, I have told him about this website but he doesn't want to know. He is obsessed with thinking that he has muscle atrophy in his hands and his calves. We'll be watching tv or be out in the park or on the beach and he'll say something like "do both of his calf muscles look the same to you? is one more prominent than the other" - he examines people's hands too. It is almost like a form of OCD.
I am sorry for rambling on. I would just like to hear from someone else in my position. I am sorry for taking up space that should probably be used by someone who has BFS, but I really dont' know where else to turn short of going to a psychiatrist for my own mental health. He constantly tells me that he is dying and that I should leave him as he doesn't want me to have to watch him die.... Sometimes I just dont' know what to do. I'd be very grateful to hear from any one in a similar position.
Thank you and good wishes to you all.
Jez

 

[CandyM314]

Hi Jez

You are more than welcome here, bfs affects not just the people who suffer from it but also partners, children, mothers, fathers etc etc.

Many people are terrified that their twitching constitutes something more sinister than a benign condition such as bfs, that is why this site is so invaluable. people soon realise there are many others going through the same thing and talking about your fears with sympathetic (but relatively anonymous) fellow sufferers can really take the pressure off.

Your partner seems to be in a bad place emotionally right now and that is difficult for you to deal with alone. please try to persuade him to check out this website as, speaking for myself, i think i would have gone mad without it this last few weeks. He needs to know he's not alone and neither are you

Take care and wishing you the best

 

[zeynrapple]

Hi,
Thanks for your reply.
I have told him about this site so many times, for the reasons that you mentioned primarily. So that he can find "comfort" in sharing his feelings and thoughts with so many other people that are going through exactly what he is. He says that it's too depressing to read about it (BFS) - but on the other hand he can search on line for information on "finger twitching", "muscle spasms", "difficulty swallowing", muscle numbness" etc etc. I find it slightly ironic that I am the one who is actually using this wonderful website and not him.
Thank you and I will be checking this forum more regularly now that I have made my initial post.
Jez.

 

[LisaQ.]

Ironically, many years before my self-diagnosis of bfs (with my pcp's agreement, ) my husband was dx'ed with bfs. Only I was the one who was constantly anxious about his health.

Every few days I would ask him if he was still twitching, lol. This was before I knew about all the other symptoms, so when my husband had complained about subjective weakness, I natually assumed his doctors were wrong for not diagnosing him with you-know-what.

My poor husband. It got to a point where all he would have to do is look at me and he would say "NO I'm NOT twitching.!" He never worried for a second that he had anything serious.

Now I'm the one with bfs (his has pretty much resolved,) and I am not afraid anymore, thanks to the kind peeps on this board.

Encourage your partner to visit us. It can make all the difference, really.

 

[OPHIAzkatieSOPH]

SusiQ I was wondering if your husband is an anxious person? Obviously he isn't worried about his health, but is he anxious at all about anything? My husband is very anxious and I believe he has bfs because he is always twitching, and he gets jerks in his sleep. He gets crampy calves all the time while he is sitting still. He isn't at all worrried about twitching but sometimes he complains about the very things that I feel. I just wonder how many people with bfs don't have a hieghtened anxiety level naturally.

 

[LisaQ.]

My husband is a VERY anxious person, but he has more of a social phobia. As far as health issues, he was a little anxious about his twitching and weakness in the beginning, but once he was told it was benign, he was able to trust his doctors and relax.

I, on the other hand am a nervous Nellie. Maybe it is because I'm a nurse and I know too much, who knows?