Absolutely terrified, please help!

BFS Online Support Group

Moderators: JohnV, Arron, garym

Absolutely terrified, please help!

Postby DebGem on May 7th, 2009, 2:22 pm

Hi guys,

Looking for some advice/support/reassurance and really just to write this down to get it all out.

I've been lurking on this site for a few months and have only recently got up the courage to post.

I'm 28, female, a health professional. You'd think that would help, but if anything I think it makes it worse. I have a stressful job and am generally anxious/easily stressed.

Around 6 mths ago I had a strange 'bubbling' sensation in both of my lower legs, it lasted 1-2 days. There was no numbness or tingling. It felt as if someone had poured 'fizzy' juice into my legs. If I moved my legs, it stopped, but started immediately when my legs were at rest. This disappeared.

Then I started getting LOTS of twitching in both calves. NON STOP. Then I started to get twitches in buttocks, thighs, arms etc. Occasional 'buzzing' twitches in feet and scalp. This has been going on for months. It's settled down, but I have almost constant twitching in the right calf (and left arm). It'll go away for a few hours at a time, then returns. I can see it under the skin.

My only other symptom is occasional and subtle 'sensitivity' of the skin. This occurs only now and then, changes from hour to hour and comes & goes.

Funnily enough, I did not automatically jump to thinking ALS/MND. Mainly because I have no weakness/muscle atrophy, and because it's so rare in my age group. Also, I have seen ALS/MND patients, and they hardly ever notice their twitching, and their fasciculations are quite obviously not what mine look like.

No, my fear has been MS. I have no other symptoms, but it doesn't stop me worrying. Some days I get on with my life, and some days I am so terrified I want to hide under a blanket and cry. I am TERRIFIED of MS. I'm heartbroken about it.

I'm embarrassed, because lots of people have it and live with it and I'm ashamed of being so upset about it.

I am not going to go and see a doctor about it, for lots of reasons. I am afraid tests might show up something positive, and I couldn't cope with that right now. Also, apart from the twitching, nothing else has happened. I have a glimmer of hope that this might just be BFS, and if so, I don't want to have gone through all those tests for nothing.

I know none of you have any answers, there are no answers, but some days I really really struggle with this. I don't want to burden my family/partner with more tears.

Thanks guys.

D
DebGem
New Member
New Member
 
Posts: 9
Joined: May 3rd, 2009, 5:33 am

Re: Absolutely terrified, please help!

Postby twin2 on May 7th, 2009, 2:35 pm

Welcome to the board. You've been lurking around a while, so hopefully you've had a chance to search old posts and see how similar your symptoms are to all those who have come before you. It helps to see that sometimes. You said you will not see a doctor about these symptoms, but you may want to see someone about your stress and axiety. Managing anxiety is the key to dealing with BFS. It really is a scary syndrome and causes real panic for most of its sufferers. Figuring out how not to panic, either through therapy, meds, or both can be a life-saver.

Good luck!

Becky
twin2
Saint
Saint
 
Posts: 774
Joined: March 10th, 2009, 7:53 am

Re: Absolutely terrified, please help!

Postby DebGem on May 7th, 2009, 2:41 pm

Hi Becky,

Thanks for your kind words.

Unfortunately I've not got the courage to see a doctor/anyone else regarding the anxiety thing yet, maybe that's something to work on. I've been trying to self manage it. It's not working clearly!

I've been looking at other people's posts, but of course, I just think "That's OK for them, but I'VE got something wrong with me...." etc, I'm sure everyone must do this.

I'm hoping to get to the year mark without anything else happening - then I might settle down a little.

I'm AMAZED at how many people use this site - thousands! BFS must be very common. And I'd never heard of it. Ever.

best wishes,

D x
DebGem
New Member
New Member
 
Posts: 9
Joined: May 3rd, 2009, 5:33 am

Re: Absolutely terrified, please help!

Postby simon_w on May 7th, 2009, 3:37 pm

Hi DebGem
You may have seen that you are not the only health professional lurking on this site! We health professionals are just as prone to health anxiety as anyone else and our training (to rule out serious pathology when patients present to us) leads to a tendency to jump to the worst case scenario when our own health is threatened. Your fears of MS are therefore completely understandable.
My MND fear is still lurking in the background although it is generally much less front of mind than it used to be. I found going to see my own doctor and getting referred on to a specialist very useful in helping me come to terms with what is hapening to me and I think you should consider biting the bullet and doing the same.
Try not to worry too much!
Regards
Simon
Fascics since Sep 08 when aged 44. Abnormal EMG (denervation/reinnervation L quads); brisk reflexes R arm on one clinical exam. Health anxiety in early stages, less so now
User avatar
simon_w
Saint
Saint
 
Posts: 746
Joined: January 28th, 2009, 2:58 pm
Location: New Zealand

Re: Absolutely terrified, please help!

Postby SuziQ on May 7th, 2009, 3:44 pm

Hi Deb,
Since you are a health professional, I'm sure you already know that MS is a disease of remissions and exacerbations, not symptoms that fluctuate and migrate throughout the course of the day. Those demyelinating plaques don't move around from one nerve to the other, they stay put until it is their time to remit. As a fellow health professional, I understand all too well the fear of MS.

But fascics, buzzes, and all that you are describing are not symptoms of MS.

MS generally presents with optic neuritis-partial or complete blindness/pain in one or both eyes, which brings a person to the emergency room. An MRI and neuro exam confirm the dx. It can also present with trigeminal neuralgia, occasionally vertigo, bladder symptoms, or numbness/weakness of one limb.

So, it sounds like you are stuck with us bfs'ers, though I would, of course, STRONGLY encourage to get your diagnosis from a qualified flesh-and-blood physician. Only he/she can examine you and make sure you don't have something TREATABLE, ie-thyroid disease, electrolyte imbalance, vitamin deficiency, etc-that could be creating these symptoms. Oh-and it is worth mentioning that bfs is ALSO treatable, (as is, incidentally, MS-which you DON'T have.)

I hope this helps to ease your mind.

Blessings,
Sue
Be careful about reading health books. You may die of a misprint.
Mark Twain
User avatar
SuziQ
Saint
Saint
 
Posts: 2139
Joined: March 23rd, 2005, 10:36 am

Re: Absolutely terrified, please help!

Postby DebGem on May 7th, 2009, 3:54 pm

Thanks Suzi and Simon, very comforting to know other healthcare folks have it and it's not just me!

Despite my medical training, I'd never heard of BFS before, and am ashamed that I 'googled' my symptoms, and ended up at MS. I know twitching can occur in MS. I know it's unlikely to be a first symptom, but that doesn't comfort me some days.

Googling also brought me to this site, and I couldn't have been more relived to find that there MIGHT be another explanation for my symptoms other than ALS/MND or MS. I'm clinging on to this hope for dear life.

I think you are right, we immediately assume the worst because it is what we are trained to do to rule out pathology in patients. I'm blessed in that I have never had a health problem ever before this, and it is terrifying. What a lesson in being on the 'other side of the desk'.

I'm also relieved to see the Mayo clinic did a study showing 140 patients at 7 yrs follow-up with BFS and no serious neuro pathology. Also about 33% were healthcare people. Interesting.

Obviously I haven't had an EMG/MRI so can't be too comforted.

Your advice to see a doctor is sound, but I've pondered it long and hard, and fought with myself about it, and really can't face it right now. Hence my writing on this board to 'vent my spleen'.

Many thanks, hope you all keep well.
D
DebGem
New Member
New Member
 
Posts: 9
Joined: May 3rd, 2009, 5:33 am

Re: Absolutely terrified, please help!

Postby k9ck on May 7th, 2009, 6:49 pm

DebGem,

Welcome, you will find alot of support here. I PM'd you a message

T
k9ck
Hero
Hero
 
Posts: 459
Joined: July 24th, 2006, 2:48 pm

Re: Absolutely terrified, please help!

Postby simon_w on May 7th, 2009, 11:03 pm

Hi Deb
Have sent you a PM too.
Just a couple of additional things that come to mind having reread your post - I am not a neurologist but have seen a few MS patients in my time. Doesn't sound remotely like this from your symptom description. If you imagined a patient consulting you with these symptoms, would this really be a diagnosis that came to mind? If not, then you could use this logic to reassure yourself. And if someone consulted you with these symptoms, would you refer them to a neurologist to reassure tham that all was ok? If so, maybe this is a good option for you too?

Thinking through your specific symptoms;
1. You are young - BFS is more likely on this basis alone I would think
2. You hae a sressful job and are predisposed to anxiety - there is evidence that this can precipitate/ exacerbate BFS
3. Your symptoms are reduced when you move your leg - as you will se from the Wikipedia entry under fasciculations/ BFS, this is consistent with BFS
4. You have vague pareaesthesia (bubbling, fizzy juice down the leg...) - as you'll see from the Mayo Clinic paper, 'migratory paraesthesia' is common in BFS
5. You have generalised not localised fasciculations - this is highly characteristic of BFS and no other diagnosis

My fear was of MND because I have two friends with this. Could your fear of MS be more to do with past experiences than good science?

Anyway, just some thoughts to be going on with!
Good luck
Regards
Simon
Fascics since Sep 08 when aged 44. Abnormal EMG (denervation/reinnervation L quads); brisk reflexes R arm on one clinical exam. Health anxiety in early stages, less so now
User avatar
simon_w
Saint
Saint
 
Posts: 746
Joined: January 28th, 2009, 2:58 pm
Location: New Zealand

Re: Absolutely terrified, please help!

Postby LaurentCH on May 8th, 2009, 1:22 am

hi d

ms is the least of my fears....not with twitching...but you write that fasciculations in pals are obvious....what do you mean by that???

greets from tiny switzerland
BE THE CHANGE YOU WANT TO SEE IN THE WORLD
User avatar
LaurentCH
Saint
Saint
 
Posts: 950
Joined: October 27th, 2008, 7:30 am
Location: switzerland

Re: Absolutely terrified, please help!

Postby raindog on May 10th, 2009, 4:14 pm

LaurentCH wrote:hi d

ms is the least of my fears....not with twitching...but you write that fasciculations in pals are obvious....what do you mean by that???

greets from tiny switzerland


I think she means Laurent, that the patients she sees with MND are there because of real weakness, wasting, profound fatigue and that their twitching is just a later insignificant by product of a very progressive illness.
User avatar
raindog
Saint
Saint
 
Posts: 1289
Joined: March 17th, 2008, 6:51 pm
Location: Barnsley UK

Re: Absolutely terrified, please help!

Postby neodave on May 21st, 2009, 4:38 am

Hi Deb

I couldn't believe it when I read your post, because you sounds exactly like me. I too have convinced myself I have MS. Some days I manage to forget about it, and others it's all I can think of. I know the symptoms of it so well now that anything I feel that's remotely linked sends me into panics. I had a minor ache in my eye last night -not even enough to use the word 'pain' - and I went to bed shaking because I was thinking about MS. I've had twitching since I was 17 (I'm 25 now) and the fact that I've still not had anything serious happen should be reassurance enough. Still, anything out of the ordinary and I flip out. I'm also too afraid to see my doctor - I worry about something underling, I worry I won't be able to cope with an MRI or EMG, and trying to tackle anxiety would mean SSRIs which I'm not willing to take. But, because my BFS is self-diagnosed, there remains a concern that it's an incorrect diagnosis. I also worry that my doctor won't have heard of BFS and so won't take me seriously.

You're not alone through this. Knowing about MS the way I do, I think from what you've said, you don't need to worry about MS. If you're stressed, you'll probably find this makes it worse. I know that my twitching is much worse when I'm worried and stressed, and taking some time out makes all the difference.

Do you drink much caffeine? I started drinking decaff coffee in February and only drink one cup of tea a day, and that's made a big difference. If you're a big caffeine drinker I would seriously recommend that.

Dave
neodave
Interested
Interested
 
Posts: 17
Joined: February 8th, 2009, 10:53 am

Re: Absolutely terrified, please help!

Postby Barbie800 on May 28th, 2009, 6:49 pm

Deb,

I have twitching all over my body also. Started 2 months ago and has not let up. I twitch everyday. Some days are good some are bad. I have been so terrified at times that I have cried all day. I will be at work and go into the bathroom to cry. I have thought of ALS, MS, Parkinsons, Brain Tumor, the list goes on and I had a clean EMG and clean neuro exam and still don't believe I'm ok. This board has been a lifesaver for me. Just hang in there and know you are not alone in this as you can see.
Barbie800
Saint
Saint
 
Posts: 1169
Joined: April 22nd, 2009, 2:39 pm
Location: Pennsylvania, USA

A sort of cure?

Postby DebGem on June 15th, 2009, 3:09 pm

Hi all,

Many thanks for your kind words. Maybe my experience can help some of you.

I had months of terrible twitching, and I was so worried I made myself ill. Lurking on this board didn't help.

I finally got up the courage to post, and lots of people were kind enough to write to me privately and reassure me. One in particular was my symptom 'twin'. I was amazed at the similarity in symptoms.

And guess what? Almost the SAME DAY, after MONTHS of twtiching, as the *penny finally dropped* that maybe, just maybe, this was all anxiety -related - the twitching subsided.

Now, I'm not saying it's gone, it hasn't. But it's nothing like it was. I can only conclude that my anxiety was feeding it. I have no weakness after 8 months of twitching so IT IS NOT MND.

Also, if it is MS, then it's a heck of a bizarre presentation.

As a doc, I have to admit I didn't really properly believe that the mind could generate such visible and physical symptoms, but there you go. It does.

I'm not worrying about every little twitch and tingle now. I can't explain it very well, I just reasoned with myself and now it doesn't bother me. I find this weird, because I was near-hysterical before.

Hope this helps guys,

D x
DebGem
New Member
New Member
 
Posts: 9
Joined: May 3rd, 2009, 5:33 am

Re: Absolutely terrified, please help!

Postby TattooedMommy on June 15th, 2009, 4:43 pm

Hey there,
I can relate to you 28 years old @ my last onset w/ weird sensations and twitching- Medical field (Nurse) myself on my feet a lot and running back n forth lifting heavy things..Non STOP action...My fear ALS...(OLD FEAR NOW) but I've NEVER thought about MS what so ever....I have a friend that is stuck on MS and I can talk to her ALL DAY LONG and I fear not of MS or ALS and she FEARS NOTHING OF ALS...it was like we were made for eachother.

I have two people in my family that have MS. Back in the day when I thought I had ALS i'd welcome MS because its not a death sentence such as ALS is. It's funny b/c I am around the 2 people in my family with MS (these are relatives that were married into my family, not genetic) but anyhow..I can be around them and know that what I have and am experiencing is NOTHING to do w/ MS. When infact I asked them (whom both are on opposite sides) if they twitched in random spots..One said "Ummm what do you mean!", the other said "Like jerk or muscle twitches"....then both replied they get the occasional like muscle twitch after a lot of activity but its nothing that has bothered them and its not related to MS. I DIDNT VOLUNTEER that INFO they (2 women) said..."Muscle twitching has nothing to do w/ MS".

I then asked one day when I was having vibrating tinglig sensations down my spine if they had that...1 replied.. "I only wish my sensitivy were that well " the other one answered "Dee, if you had MS you wouldn't have questions, its painful...its not a subtle thing". So there ya go! Only recently now Im 29 near to turn 30 have I FINALLY seen NMD in real life in a patient and not just a text book do I REALIZE how DIFFERENT NMD as you said. It's nothing how us BFS'ers describe...Ok, but give me some credit in having to 2 family members w/ MS that what we have is nothing like MS! I have never gone down that route (The MS route) and being around it and reading all I've read..Never a concern for me..nor should it be for you either...

Cheers,
DeeDee
"I've been spending way too long checking my tongue in the mirror
And bending over backwards just to try to see it clearer
But my breath fogged up the glass
And so I drew a new face and laughed".
User avatar
TattooedMommy
Saint
Saint
 
Posts: 813
Joined: January 21st, 2008, 8:04 pm
Location: alabama

here's some hope... I'm better!

Postby DebGem on December 20th, 2012, 7:12 pm

Hi guys,
You can see that in 2009 I was a bit of a mess, and genuinely terrified.
Well, it's nearly 2013 and I'm fine!
Hope that gives some people some peace of mind. It would have helped me a lot to read a post like this back then.

Love D x
DebGem
New Member
New Member
 
Posts: 9
Joined: May 3rd, 2009, 5:33 am

here's some hope... I'm better!

Sponsor

Sponsor
 

Next

Return to The Support Group

Who is online

Users browsing this forum: No registered users and 2 guests