Can't accept this is BCFS

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Can't accept this is BCFS

Postby leroyb on June 13th, 2014, 5:34 am

Went on Monday. I was so sure it was going to be bad I asked the mods to delete my original post in the support forum as I couldn't face coming here and maybe worrying people.

I gave him the full story and he did a full clinical.

When he was finished he said "you do not have a serious neurological illness. Also you have good muscle tone, you are very strong physically and all your reflexes are normal. What you do have is BCFS".
My fascs of course disappeared during the entire treatment so I did a wall sit to get some going. He could feel them afterwards but was utterly unconcerned "I get those too".

He said he'd do a referral for the EMG and I said "Oh?" He said "well most anxious people who come in here never believe me and insist on it".
I thought about it and said "I have to draw the line somewhere and I'm going to do it here and accept what you've told me. He smiled and said "well I agree with you
because you don't need one" (I'd say he has a mental bet that I'll be ringing in the next 2 weeks for the referral but I'm going to try my utmost not to)

So rightly or wrongly I'm going with that. I'd be waiting 6 weeks for an EMG and I'll know by then one way or the other. Also it occurred to me (duh) that these guys really know
their stuff and they don't lightly say "you are ok" if they think anything else. He doesn't want to see me again.

ps I also checked out my neuro online and found out that his specialty is MND and that he worked in Cleveland Clinic before coming here. There was a post on medhelp where some Irish people were asking about coming to Cleveland Clinic to see an expert and they replied that they had one near them - the guy I went to see.

I'm still utterly convinced something is going very wrong with my body but I currently have no proof of that so just going to wait it out.

I wrote this awhile ago and never posted it.

UPDATE:

I rang back to get an EMG as my left quad is losing muscle mass. He won't do an EMG or give me any treatment and neither will my GP. I honestly don't know what to do next.
I know you've heard this before on this forum but how the ******* **** can this be benign? I just can't believe that.

And nope there's still nothing I fail to do. But I clearly feel my muscles are weakening all over my body. This is 7 months in now. I think I have a slowly progressing form. Next step buy some dodgy drugs over the internet?

UPDATE:

Demanded EMG from my neuro and I am waiting for a referral. I did some reading on the other forum and really very little of what I have matches any of that but if not then what???????????

Had CPk measured and came in at 213 but I ran 5 miles the day before so maybe that accounts for that. GP wasn't concerned.

My wife and family think I have completely lost the plot. I agree with them. I appear to have two futures at the moment 1) a secure pscyhiatric facility or (2) .....
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Re: Can't accept this is BCFS

Postby Yuliasir on June 13th, 2014, 10:22 am

Leroy,
if your quad is losing muscle mass, how then your tests, gait, reflexes etc. could be normal? How could you run 5 miles on atrophied leg?
Could it be that this loss is still perceived? How did you come to the idea that your left leg is damaged? Do you have significant decrease of circumference (say more that 4 inches)? Are you unable to flex or strainthe muscle?

If a top specialist in MND in your area is not impressed with your presentation, why then you think he is a kind of idiot and blind and did not see nothing suspicious?

On the examples of our fellows with definite neurological issues like German2 (polyneuropathy) or TDenver who was diagnosed with MND one can see that even minor and slight suspicious signs (like it was with TDenver) were not missed on the clinical exam and eventually lead to MND disgnosis in several months only. In case of German2, the neuros did not diagnosed her with MND but all noted that 'there is something affecting your nervous system", and it seems to be polyneuropathy.

If experienced MND specialist said you have BCFS - then why not to trust him? Finally we all come to the doctor for diagnosis, but for me seems like some of us come for a death sentence and are very disappointed when doctor is not prone to confirm it... which is a bit strange but I have an explanation for it:)

I am almost sure EMG would not help you to believe in BCFS. People always find a good basis for concerns: what if the tech was blind or had a hangover? what if machine was broken just when I went in? What if the needle was too blunt? Waht if they did not check my sacrum (left pinky toe, right ear muscle etc.), what if it was too short to detect malignant waves, etc. etc. etc.

On my point of view you do not need secure psycho ward as you are not socially dangerous or present a danger for yourself. And your second option is a good antiobsessive treatment and psychologist (a good one to build a trust) and in a few years your plot would be back. BCFS may stay, however, but you will learn how to live with it as it is not life endangering.
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Re: Can't accept this is BCFS

Postby leroyb on June 13th, 2014, 4:35 pm

Thanks for your reply Yulia.

I think anyone else would laugh at what I call atrophy. I have long lost the ability to tell whats normal and not. In fact I'm pretty sure I always twitched and had odd sensations in my legs. I just never paid attention to my legs at all.

(interestingly my sister has twitchy muscles everywhere and has had for years. She just never cared (and she's a nurse on a neuro ward!).

My left leg just seems to get tired more easily than my right...sometimes.
Same with other muscles. Sometimes my face gets tired after talking for 5 minutes. Other times I could talk for 3 hours and nothing.

You are completely right of course. 1 or 10 or 20 emgs won't persuade me my body is functioning properly. It will give me about 48 hours reassurance. I'm going to see a psychotherapist next week.
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Re: Can't accept this is BCFS

Postby Yuliasir on June 13th, 2014, 10:09 pm

ah those pains.. yes, very strange. But I have them since childhood really (mostly in hands) and only here I had recognized that sometimes my hand had a burning pain even from a toothbrushing.

tj be honest I always thought it is something rather normal. Maybe our muscles produce more lacic acid or have less microvessels to remove it... or maybe we have more pain receptors in them...

I support your decision regarding psychologist. In our condition we also lost ability to think rationally (due to pretty physical process in our frontal lobes caused by chronic stress). Psychotherapy helps to gain it back and this is in fact the main goal of therpay, after restoration of that critical thinking alll the rest is minor job.
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Re: Can't accept this is BCFS

Postby Yuliasir on June 13th, 2014, 11:28 pm

also a good example of our way of thinking is your finding that after reading 'the other forum' you accept the fact that you ahve a little to no matches in clinical picture (not all fellows are able do that by the way!), but diconnect in the frontal lobes makes you to come to uttelry strange conclusion - if not THAT, then WHAT?
BCFS of course... but I think BFS or BCFS comes very often to people who just have essential need to be sick. And this need has to be respected just becasue our body is always right to a certain degree. I can not say that it is true for 100 % of fellows, but vast majority of us have some essential stress on the background (or less essential but very chronic). So we all need to recognise we are weak, sick and have to be under some care. And as far as I may judge, BFS is one of the most common ways to achieve that condition (another very common is a migraine, and some of us have a pretty combination of them). Migraine for now is known to be (at least by consensus) a kind of very specific overall reaction on stress, which combines both flight and fight like responses, but generally at the condition when both flight and fight ability is very limited by social, economical and cultural factors. When my daughter had optical migraines, it was really in the settings at which she would be 100 miles away or at least would not get an eye on them - and she really got blinded with scotomas scared and scaring me to death...
BFS is a bit similar: exactly like migraine, it involves a hell of autonomous reaction, an excitation foci in the brain (just in mirgaine it is optical zone and in our case it is rather motor brain cortex, and the nature of excitation and suppression is different - more spreaded in time), and, as well as migraine, it lacks clear clinical indices (except very low B and D vitamines many of us report, and this condition often is resistant to supplement therapy).

For me important fact confirming BFS has a lot of "holy disease' features is that strong an non-critical linkage to ALS or MS we all go through. Partly it comes from the fact that many of us are not neurologists and can not tell A from B, cannot evaluate the symptoms in a right way. But we also have an experienced neurologist here who still, after 7 years of twitching, believes he might develop ALS (and probably make a record in medical papers then!). For me it means that many of us live in the state when disease (better not life endangering but mimicking it in our perception) is an essential need: it is a refuge, a promise, a gift, a goal...

That is why it is so hard to be critical even to the obvious differences between ALS/MS clinical picture and our condition - becasue we need it, we do not need MS or ALS of course but we need a tought of it for our own benefit. This benefit may be miserable compared to a full size life before BFS, but it only means in that full size life we were too restless, and neglecting ourselves too much, and this is the revenge.

That is why psychotherapy helps. It revelas your true needs (which are very simple) and, moreover, it reveals the barriers you have inside to satisfy those needs as easily as you breath, not by the bypass way of BFS or migraine attack. For me it was a long run (about a year for BFS only, 5 years in total) but it is so rewarding...
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Re: Can't accept this is BCFS

Postby leroyb on June 14th, 2014, 8:34 am

It would make sense to me to be a fight or flight response turned inwards. My problems directly correlate with stress. The more the stress the more severe the symptoms. And I am stuck in a situation I cannot escape from. Don't know if you ever read of the property crash in Ireland but we have a mortgage we cannot ever hope to pay.

I was considering why the definitive "you don't have x" seems to be worse than "I am fairly sure". For me it's because he can't know that for definite and hence has said something untrue. So then I question the veracity of everything he says
(of course I am looking reasons to doubt him).

On an unrelated note my wife gets terrible migraines. Her vision goes sideways or appears in wave form. She needs help to walk when she gets a bad one. Some days she gets them every 30 minutes.
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Re: Can't accept this is BCFS

Postby Yuliasir on June 14th, 2014, 10:14 am

oh holy crap had no idea about your troubles... Even do not know what to say... Time of course may settle all down, and at least I wish you to get out of that crash with minimal possible damage...
no wonder you have BFS and your wife has migraines. My sympaties to her... and every 30 mins migraines should really be treated, as it must be devastating :(
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Re: Can't accept this is BCFS

Postby leaflea on June 14th, 2014, 4:52 pm

leroy, I mean no disresepect, I really don't. But your first post in this thread is almost humorous...how you decided not to get an EMG and then your two updates. they actually made me smile though I do understand your feelings. been there myself. 1. refused EMG when offered just for your peace of mind. 2. ran back to ask for one but they wouldn't give it to you. 3. went back and demanded an EMG. It is hard to believe this is benign, but apparently it is as accounted by so many people on this board.
Last edited by leaflea on June 15th, 2014, 2:39 pm, edited 1 time in total.
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Re: Can't accept this is BCFS

Postby readytocheckout on June 15th, 2014, 4:35 am

leroyb wrote:Had CPk measured and came in at 213 but I ran 5 miles the day before so maybe that accounts for that. GP wasn't concerned.


Leroy I recently had my CPK checked after my EMG. The neuro told me to wait for 3 days after EMG and during those 3 days no exercise because there'd be a high chance of a higher result if I exercised.

leroyb wrote:1 or 10 or 20 emgs won't persuade me my body is functioning properly. It will give me about 48 hours reassurance.

Yep, that's the nature of the beast (anxiety I mean, for me anyway). I think I'd be convinced after 20 EMGs though lol. Actually if I can be honest here, my EMGs were totally medically unnecessary but they've given me a lot more to cling on to during my darker hours. Trouble is with that though is that EMGs are not supposed to be a diagnostic tool for mental health. I can't believe the change in me since BFS started, I'm sure that it has even changed my personality, I'm so much more on edge and aware of every micro change that happens to me and I hate this. Thanks for your honesty elsewhere in this post about seeing a psych, comments like that make me believe even more that a psych is what I also need to get this under control, not another EMG.

Take care mate!!
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Re: Can't accept this is BCFS

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