I really don't want to post but I'm going insane

[mltg]

Hello,

I'm not wanting to post but I've had 10 months of hell and really would like to get people's thoughts on my story. I've been on the bfs forum for a few months.

Brief history
anxiety for 2 years. Hypochondriac with health anxiety. Married early 40s and female with 2 young kids. Was working but been off for a year. Started twitching in Feb 13 shortly after starting escitalopram and a viral illness. Body wide and in places I had no idea you could twitch. Sore thumb that comes and goes.

Dr Google not my friend and I panic so spend hours self testing etc. Twitches subsided a bit finally in June 13 until one day I get out of bed and left knee clicks. I test it and it starts to twitch all the time. Finally see neuro (expert in mnd) in September 13 who does tests and says no to EMG as clinically fine. Leg calms down eventually but in Oct 13 hurt my right leg so go back - still same story no EMG.

December 13 twitches have changed - more focused in ribs back and shoulders plus left leg 4th toe numb no pain but clicks when press ball of foot. GP says no to mortons neuroma even though feels like a guitar twanging. Go back to neuro who says not neuroligical and no EMG.

Now left calf feels tighter and also semi cramp - not full blown but arch and sole of that foot aches on and off. Calf very twitchy. I'm now freaking out and very down. Still twitch in other places but never tongue (according to neuro) and they mainly seem to be in this leg.

Questions: what do you think is causing my leg to do what it's doing? Does this sound like anything sinister?

I've stopped the medication and still twitching but it's not that which concerns me. It's the supposed progression. I also can't put my finger on it but my right hand sometimes feels weird. For example I can intermittently snap my fingers (ie sometimes a snap and sometimes a dull thud). Left hand always a snap. Husband thinks I'm a psycho and I'm starting to go crazy.

Any advice / thoughts would be so fantastic - I've read all the stickies and more and it's taken me until now to post here as I feel there's no where else to go to ask for information.

Thanks so much

 

[vickim]

I would see about some anxiety meds and see how that works. If you read the stickies then you know most PALS do not twitch until the nerve and muscle has died or dying. Weakness is usually the first thing that shows.

Everyone twitches and you are being hyper sensitive to yours. The more you focus and self test the worse things will get. You need to listen to the doctors. Try the anxiety meds for 6 months or so and see how things are then, if not better then see the doctor again.

Stress and anxiety can be a killer and you should focus your concerns there. You need to stop looking up symp toms up on the net, all you are doing is scaring yourself. The doctors are educated, trained and experienced to determine if there is a problem. No self test or web site is going to diagnose you. Please seek the right kind of help you need. You have admitted to health anxiety issues and I hope you turn your focus there.

It sounds like you have a great family and they need you.

 

[mltg]

Thanks Vicki for responding so quickly. I really appreciate it.

Anxiety is so awful but it's hard to believe that it can cause such one sided symptoms. The reason I came off the pillspills was I started to twitch not long after I took them and they just never went away.

I'm seeing a psychiatrist but the toe numbness, calf cramping and twitching mainly in this leg is getting me so worried.

In terms of clinical signs (not emg) would an experienced neuro who runs an als / mnd clinic know without doing an emg that it warranted one? SO many people talk about it as being the only sure way to know bur my neuro says I don't need one.

Thankyou

 

[vickim]

An emg is only one of the tests they do. If your basic neuro exam showed normal by a qualified doctor, i.e. no clinical weakness among other things then you should be happy and work on the anxiety. Bfs can be annoying but it is treatable and so is anxiety. Bfs and anxiety can cause the problem you are talking about.

 

[Mediasmart]

SO many people talk about it as being the only sure way to know bur my neuro says I don't need one.

An EMG can root out a diagnosis but if you have other things going on...anxiety coupled with some other condition/neuropathy/diabetes for instance, the EMG only sifts through some of it. The clinical experience is key and your neuro says nope and your EMG is unwarranted.

My first two EMGs were a waste of time and energy and finally when things were picked up definitely in a clinical evaluation did the EMG sort it out and confirm...but it didn't diagnosis.

Listen to the doctors. Please

 

[mltg]

Thanks both,

I went for a second opinion today to another MND specialist. Here his clinical checks were more thorough and I felt more comfortable being able to ask questions. It appears that the UK is a small place when it comes to neurology and MND and he knew the other consultant well which is good (I totally respect the other chap as he is very good too).

He says that I'm clinically normal with absolutely nothing to report. However he says an EMG would "allow me to move on" even though he is confident there is nothing going on. He says that he can put me in touch with a psychiatrist who works with people who have MND and also those who have a fear of having it. Part of me wants to do that but I feel also that I would be taking his time away from diagnosed people who need him.

He's giving me a week to decide re the EMG - he's happy if I don't do it and I said I'd heard it's painful, which he did not disagree with.

I'm not sure what to do. Thanks so much for replying - it really means a lot.

 

[vickim]

You have had 2 specialist say you are fine. Emgs are uncomfortable to painful depending on where the needle is put. I have had 3 and third one was painful.

You should just listen to the doctors and see about the anxiety, much less painful and more productive. You are letting your fear take over your life and you deserve more. Be happy about the clean bill of health and live a good life.

 

[mltg]

Thank you Vicki,

I'm going to park this and work on my anxiety. If things change I know where to go. I really liked this chap and I got the feeling he really cares and I imagine he's a great MND doctor from a caring perspective as well as being a good clinician. He's published internationally on Mnd so I'm sure he knows his stuff.

It's so hard when the twitching / cramps / numbness just won't go away. But as he said sometimes you just can't explain all symptoms.
x

 

[vickim]

That is very true and anxiety can cause a lot of that. Give the anxiety meds some time and work on stress relief and I bet things settle down and get better. Find a hobby to get into or try yoga or meditation. I wish you peace and good luck.

 

[CGARS]

.You DO NOT have MND/ALS!

 

[mltg]

I'm so sorry to post again, it's been a week since my last visit to a neurologist. After meeting with him and having a normal exam, we discussed whether I needed an EMG. He said I should for peace of mind but was happy with either decision.

I know I should be happy that I appear normal but I'm still terrified. I've been having initially body wide twitching for 10 months but recently it seems to have settled in my back, ribs, shoulders, feet and calves. My left leg is driving me insane with twitches and mild aching and I have a mortons neuroma/ bursar diagnosed by US.

A physio I've been visiting says my left leg / calf is very tight. I have suffered in the past from sciatica on this side, although it's not painful, more aching and feels like it's going to cramp but doesn't. Additionally my right arm can do strange things - sometimes when I snap my fingers I get a dull thud not a snap. I was putting up some flat pack furniture today and after using the screwdriver my hand was sore in the palm and I had the same thud when I snapped my fingers. It was fine again after a few mminutes.

what I'm worried about is why the mortons neuroma is there. It could be coincidental but why am I twitching and aching more in that leg? Could it be because my muscles are weakeningand II'm walking differently,causing it to appear? My left ankle feels sore when I go upstairs.

at this point I don't feel weak. But do you have to have weakness and have als? I read that one chap here had no weakness but his EMG showed problems and he was diagnosed. Would he have had other signs such as brisk reflexes?

This is what is confusing. I don't have upper motor neurone signs at the moment that would show on a neurological examination, but I have lower motor neurone symptoms of twitching and mild pain - not sure it's cramping. Is als cramping mild or painful?

My husband thinks I should have the EMG but I'm terrified of what it might reveal. I'm trying to stop worrying but surely this cannot be anxiety that's causing all this?

Any advice would be much appreciated.

Thank you

 

[Mediasmart]

For our sake and this forum's sake, please have the EMG. When it comes out normal, STOP this. You are doing yourself no good whatsoever.