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About to hit 6 month mark :)

PostPosted: February 26th, 2014, 8:22 pm
by Gamindsoc1509
Hey all, hope everyone is well.

So in the last 4 weeks I got married and went to Japan and Singapore for a honeymoon. Just got back to Sydney and we are sorting out new house and everything before starting work next week.

Just wanted to update ya'll on the journey so far and maybe get any advice on the current situation although I haven't been overly concerned.

8 months ago I came down with a flu and then bronchitis (I have never had a chest infection). Vitamin D deficiency and violent coughing led to two fractured ribs :). So for 3 months, I was pretty fked up.

Towards the end of this period (5.5 months ago) I started twitching along my leg. Did not think much of it but it was definitely happening and it was in different places (not all the same spot). Having had health anxiety in the past, I did some research and got very scared and anxious it may be ALS. This led to a lot of things.

First was constant wide spread twitching.

1.5 months into this I saw a highly regarded neurologist. He basically diagnosed me as anxious before I opened my mouth. From what I can tell he did not do extensive testing (reflexes, sensory, babinski and some basic strength or clonus testing in the ankle I think) and told me to chill the fk out (basically).

Since then the twitching has been on and off. I did notice I twitch 24/7 in both feet and this concerned me for a awhile. However, at the moment, twitches no longer concerns me, my mind NO LONGER associates it with ALS and it doesn't cause me any stress.

However due to in depth research as I am very thorough, I did develop a fear of other symptoms. Cramping being one and spasticity (or early spasticity often described as tightness) being the other.

I got a cramp in my big toe (Where I twitch) while training capoeira around 3 months ago. This scared me to bits. From then when training the big toe would go into a pre-cramp (start twitching and pulling out with the feeling of a cramp coming on). But I haven't actually had a full blown cramp since then. Lately in the last couple weeks I haven't even really been feeling those crampy feelings at all.

The only possible symptom that still holds ANY concern for me is my right calf / back of knee. For one month know it feels... tight? But tight might not be the best word. I feel no way restricted and it doesn't happen all day. But sometimes when walking the back of me knee or calf (it swaps) just feels a little tight, like it's pulling a bit. Some days are worse than others but it still hasn't gone yet. I did have an ACL reconstruction on the OTHER knee 2 years ago but still unsure what it is.

Oh and I am not mentioning the other 100 things that scared me that passed within a day or two to several weeks cause that list would be too long.

What do you all think? I am considering an 8 month final follow up (as per Dr Eisen) to be done with this but unsure if I can be bothered at the moment.

Thanks to those who can be bothered reading this and responding :)

Re: About to hit 6 month mark :)

PostPosted: February 26th, 2014, 11:18 pm
by Yuliasir
Looks like you are pretty healthy just married anxious man :)
have a good time, enjoy your family life :) Many happy years to you!

Re: About to hit 6 month mark :)

PostPosted: February 26th, 2014, 11:41 pm
by Gamindsoc1509
Contrary to popular belief the marriage has only reduced my anxiety especially after the event!

What could the funniness in calf and back of knee be though? I can't work the *beep* thing out.

Re: About to hit 6 month mark :)

PostPosted: February 26th, 2014, 11:56 pm
by Yuliasir
most probably three reasons;
1. hyperawareness
2. sensory issues die to BFS
3. circulatory issues

Re: About to hit 6 month mark :)

PostPosted: March 5th, 2014, 9:27 pm
by Gamindsoc1509
I always appreciate you responding Yulisair but some things are confusing for me. For example whenever I do even general research it seems really clearly explained that early spasticity can be simple tightness....

Also one other issue I've never mentioned on this site but I have mentioned on the BFS facebook page. My big toe on each foot (much more on my right) hands lower than my other toes when I pop the foot up on its heel and relax the toes. In fact, the gap is sometimes up to a centimetre. This is more at the end of the toe where it hangs. I feel absolutely no strength loss in the toes and can easily lift them up and control them. Is this a sign of anything? If you google "big toe hanging lower" you literally find NO information which leads me to believe its probably not a huge cause for concern but I haven't really found anyone with the same issue.

This is when it's relaxed not cramping.

Re: About to hit 6 month mark :)

PostPosted: March 6th, 2014, 12:03 am
by Yuliasir
holy crap, my friend,
ask your fresh wife to do it (it is a joke, do not start your family life with that) and you will see the same.
I have the same with my toes.
it is NATURAL.
All people complaining they can not hold a toe for sure DO NOT relax their muscles when putting on the heels and just can not hold the muscles tight, can not control them, YOU RELAX THE MUSCLES, therefore your toe goes down. IT IS NORMAL, DUDE!!!!!!!!!!!!!!!!

I wonder what strange, sophisticated and really weird combination of activities we BFS people can invent to be able to come here and say: Hey, I have another worrying sign...

trying to hold 3 kg by two fingers (one of which may be even a pinky)
walking 100 m on the heels
checking if the small toe is moving (which is not exceptionally rare ability but really not a main function of a small toe)
doing a real yoga with the tongue
etc. etc. etc.

tightness as early symptom of spasticity could be described like a person need extra effort to flex a hand for example, like if the muscles are freezed or seized. People with RA feel the same about the joints (especially in the morning). From your description nothing restricts your movements and you just feel a bit of tension in the back calf. I do have it too. I even have cramps when walking. In the back calves. I think it is due to the fact that calve muscles are big, well used and anxiety causes more ischemic effect on it that on any other muscle in the body (maybe except the cardiac muscle).

Re: About to hit 6 month mark :)

PostPosted: March 6th, 2014, 6:20 am
by ShawnW
I think the moral of the story is stop doing this to yourself.

Isolated tightness and widespread fasiculations are not a presentation of ***. If you told me that your neurologist said you have asymmetric reflexes, 1+ in the left leg, 4+ in the right with clonus and your right calf is tight. Then I would be maybe that warrants some concern. Not because of the tightness but because of the neurologic exam. You only worry about abnormal reflexes, weakness and atrophy...nothing else. You are chasing phantoms and reading on subjects which are driving you crazy,,,not to mention you are still self testing? Stop.

Re: About to hit 6 month mark :)

PostPosted: March 9th, 2014, 3:48 pm
by Gamindsoc1509
Agreed all... I just going through phases of concern and no concern. For example at the moment I am not stressed. In fact I ventured on here more out of habit forgetting I was awaiting responses.

Funny though cause the people opposite me started talking about their grandma who is dying cause of ALS *eeek!*

Aside from my little freak out last week on here I hadn't been concerned since about 6 weeks before that... The tightness has been here for 6 weeks. It normally doesn't bother me but when it's there every day for 6 weeks and if I have a bad day and a little anxiety kicks in it spirals out of control.

Thanks all. Hopefully I go 8 weeks without freaking out again :)