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Author Topic: Shaking aching shrinking thigh! Big MND fears  (Read 1442 times)

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Offline LadyH

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Shaking aching shrinking thigh! Big MND fears
« on: August 15, 2014, 10:14:30 AM »
Hi all,

Been having some real troubles the last few weeks with my thigh.

Had a neuro exam 10 days ago with GP, who says it was totally normal, but I just can't take that I feel so not normal!

I'm convinced of muscle waste in my left thigh, it hurts, buzzes, spasms, aches, hums, vibrates in a isolated area of my thigh, 24/7. The area there, the muscles are smaller, flatter & less defined. Since the docs I think it's continued to shrink & have noticed bumps, ridges & dents in the large thigh muscle. I can never forget about it because of the constant sensations there.

It feels odd to walk on, it doesn't feel right- gives me so much grief!

Also the fact that I've lost like, 5kgs and no signs from any where else in my body (am only 5"2 so weightloss of that amount should be quite noticable!) other than from my

At my wits end, this is too scary

All and any thought & comments, welcome please

Hxx
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Offline ShawnW

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Re: Shaking aching shrinking thigh! Big MND fears
« Reply #1 on: August 15, 2014, 10:52:22 AM »
This is an easy one.  If you have atrophy from *** then you will have an abnormal reflex exam.  If your reflexes are normal the chance that it is something sinister decrease astronomically.  Since the doc isn't concerned and hasn't reported a +babinski or clonus...chances are that you are just fine. 
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My insight, thoughts, experiences or advice that may be posted in this forum are not meant as a substitution for the advice of your physician.

Want to know how to address your anxiety?
http://www.anxietyzone.com/index.php/topic,93402.msg521266.html#msg521266

Offline LadyH

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Re: Shaking aching shrinking thigh! Big MND fears
« Reply #2 on: August 15, 2014, 11:54:48 AM »
Hi Shawn,
Thanks for your reply!
When I saw the doc 10 days ago he did a couple of reflex things in each leg, and I keep hanging on to his comment afterwards which was "That was a totally normal exam".
Some one told me- Normal exam = No ***

It's so hard, on one level I believe that, on another I totally believe what my body is feeling & it's so scary!

Hxx
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Offline sixpack

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Re: Shaking aching shrinking thigh! Big MND fears
« Reply #3 on: August 15, 2014, 12:32:05 PM »
welcome ladyh

you are new here I see.  Once you've had a chance to peruse the forum, you will note that ALS and other motor neuron diseases are VERY POPULAR amongst anxious peeps.  there are thousands of threads describing just what you are describing. 

I don't know how long you've had anxiety, (which being on this site tells me that you are aware that you must) but anxiety/stress causes all kinds of physical symptoms as well as distorting our perceptions of how things really are.  At some point we get ourselves very much mired in the endless cycle of anxiousness/checking/symptoms....

Your post does read very much the way an anxious person says/perceives things.

if you click on my username.   it will take you to my profile.  i have 4 links about anxiety and its wily ways.  the third link talks about common symptoms.  I am not saying I am an anxiety guru.  what I am saying is I've dealt with it myself.  I've been a member here 5+ yrs and see how anxious thinking plays out around here each and every day.   :yes:  :winking0008:

and, I  don't think you have any motor neuron disease.
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MOST anxiety occurs on a subconscious level.  JUST because you don't feel consciously anxious or had a day or two of calm doesn't mean your mind & body are relaxed.  It can take months of reduced anxiety before a body goes back to a more non-reactive state

Offline LadyH

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Re: Shaking aching shrinking thigh! Big MND fears
« Reply #4 on: August 15, 2014, 12:43:19 PM »
Hi Sixpack and thank you very much for your message,
Yeah, I am very aware of my anxiety, it's been an ongoing rumbling problem for me, and the last 6-8weeks has manifested in this health anxiety, and I've not been relaxed or really very happy since!

It's so tricky, I feel like I could accept my brain going crazy with worry, if I wasn't feeling and seeing all these physical things with my body, and well my leg! Despite being told that my leg is normal, to me it is different and It's so hard when there are physical, visible, measurable things wrong or different with you. For me like all the sensory stuff in the leg, the weight loss etc.

I am falling into a cycle of constantly testing my leg. Have a had a few low points like yesterday, doing squats in a coffee shop toilet! (can one leg squat with right leg but not with left!) feels so much weaker and it's all really scary!!!

I tried to go to your profile, but it says I don't have access to that area? Is it because I am new perhaps? Could you maybe post the links here I'd very much like to read them!

Thanks for your comments, I hope to soon believe what you say about the *** !!
Hxx
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Offline sixpack

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MOST anxiety occurs on a subconscious level.  JUST because you don't feel consciously anxious or had a day or two of calm doesn't mean your mind & body are relaxed.  It can take months of reduced anxiety before a body goes back to a more non-reactive state

Offline SkittishSari

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Re: Shaking aching shrinking thigh! Big MND fears
« Reply #6 on: August 15, 2014, 03:01:51 PM »
You've just describedmy left thigh a couple of months ago, and worrying a out limb onset als then gave way to worrying about bulbar, which is where I am at now. If your doctor isn't worried, you should not be either, though I know very well it is easier said than done.
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Offline LadyH

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Re: Shaking aching shrinking thigh! Big MND fears
« Reply #7 on: August 15, 2014, 05:35:12 PM »
Thank you very much for the links SiXpack!

SkittishSari, it's a scary thing to be happening. Has a doctor told you you're okay? Are you feeling better now?

It's just so difficult to know what to do fur the best, as I know I saw my GP less than 2 weeks ago but I feel like so much has changed and progressed since then, and want to go back with these new & scarier findings.

Difficult!

I know I shouldn't but I've been pushing the leg and it really hurts and is really trembly now. I feel so silky for feeling this way & hate how self absorbed it's making me. But it's so hard not to be when you're convinced this terrible thing is befalling you😔
Hxx
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Offline LadyH

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Re: Shaking aching shrinking thigh! Big MND fears
« Reply #8 on: August 18, 2014, 05:54:08 AM »
Hi everyone,

I'm just about to start some therapy, and have a first meeting, assessment type thing later. Really looking forward to is & want to get myself on the road to recovery.

This being said, I am still so anxious about my leg. When I lift the leg out to the side, a big hole, flat space appears down the outside of the upper part of the thigh. it just totally dips in and becomes hollow. I think this is a new problem, it's scary, I don't like it. This is in the leg that's smaller, stiffer & less flexible.

At what point should I go back to the doctors? Have only seen GP once about this issue with the leg & that was two weeks ago- anyone got any advice on this?

Thanks & Hope everyone is having a good day so far
Hxx
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Offline ShawnW

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Re: Shaking aching shrinking thigh! Big MND fears
« Reply #9 on: August 18, 2014, 08:20:06 AM »
First, I want to say I am proud of you for taking the steps towards getting better.  Therapy should be a huge help to you.  As for the physical part of this...I can say anxiety plays tricks with our head.  Your ability to observe yourself is broken.  Self examination is increasing your anxiety and pain.  If you had a normal neuro exam the likelihood of this being something serious is extremely small.  I would follow the advice of your GP.  If he/she believes you need more of a work up...then do it.  If not, let this go.

As we age our bodies change...and those of us who self examine notice things...and they are very real and different to us.  We put a value on them...when in reality they mean nothing.  If I had a dollar for every person who thought they had atrophy, dents etc and placed anxiety upon that "symptom" then I would be a wealthy man.  Anxious people lose weight...we all have asymmetry...our observations about ourselves are broken...then we refuse to believe our physicians.  All of that we have a choice over.  We can choose to believe we have a very atypical presentation of a super rare disorder that our doc has missed or we can face the real problem...anxiety. 

I wrote up a post learning from anxiety.  Instead of focusing on your leg...read that post...and really take it in without going back to thinking about your leg which is overwhelming your thoughts. 
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My insight, thoughts, experiences or advice that may be posted in this forum are not meant as a substitution for the advice of your physician.

Want to know how to address your anxiety?
http://www.anxietyzone.com/index.php/topic,93402.msg521266.html#msg521266

Offline LadyH

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Re: Shaking aching shrinking thigh! Big MND fears
« Reply #10 on: August 18, 2014, 08:53:31 AM »
Hi Shawn,
Yes thank you for your reply, and I gave your post a read which was great and very relevant for me.

What you say is so true, it's a very difficult situation to be in and at the moment, I do just feel totally overwhelmed by these thoughts and feelings- physical and emotional. I find it so hard not to go running back to the doctor thinking, did I tell him this at the time? Had this started yet? Did he know about this & what about that...... But I must think- he is a professional- I shouldn't have to tell him everything, if I forgot something whatever he would have asked all the right questions. He did the Neuro exam which was fine,

It's so tricky when I see and feel things that are so real and scary to me, that it is my bloody brain lying and playing tricks on me.

I don't want to get stuck in a cycle of running to the doctor constantly, and hope this therapy will help.
Even though I can rationalize things out, I am stuck with the underlying, overwhelming feeling that there is something drastically wrong, and I just can't shake that.

Hxx
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Offline ShawnW

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Re: Shaking aching shrinking thigh! Big MND fears
« Reply #11 on: August 18, 2014, 09:14:56 AM »
Hi Shawn,
Yes thank you for your reply, and I gave your post a read which was great and very relevant for me.

What you say is so true, it's a very difficult situation to be in and at the moment, I do just feel totally overwhelmed by these thoughts and feelings- physical and emotional. I find it so hard not to go running back to the doctor thinking, did I tell him this at the time? Had this started yet? Did he know about this & what about that...... But I must think- he is a professional- I shouldn't have to tell him everything, if I forgot something whatever he would have asked all the right questions. He did the Neuro exam which was fine,

It's so tricky when I see and feel things that are so real and scary to me, that it is my bloody brain lying and playing tricks on me.

I don't want to get stuck in a cycle of running to the doctor constantly, and hope this therapy will help.
Even though I can rationalize things out, I am stuck with the underlying, overwhelming feeling that there is something drastically wrong, and I just can't shake that.

Hxx

As a physician I have seen good and bad docs.  But, all are trained to see and find the really bad stuff.  Most can do an adequate neuro exam.  If reflexes and strength are intact the chances of having some sort or rare presentation of a rare disorder are so small it's not worth talking about.  The best *** specialists in the world agree...if the neuro exam in normal it's not ***.  They use EMG to confirm their suspicions, to sort through other disease processes and/or to console anxiety.  GPs are trained if anything seems slightly amiss then refer.  That should tell you much.  Accept that you are physically healthy then attack this anxiety thing head on.
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My insight, thoughts, experiences or advice that may be posted in this forum are not meant as a substitution for the advice of your physician.

Want to know how to address your anxiety?
http://www.anxietyzone.com/index.php/topic,93402.msg521266.html#msg521266

Offline LadyH

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Re: Shaking aching shrinking thigh! Big MND fears
« Reply #12 on: August 19, 2014, 05:10:20 AM »
HI Shawn,

I had a great appointment yesterday with a counselor/ coordinator at a great little place. It was really good to talk to someone.
She's recommended 3ish months of CBT to attack this initial problem- a sort of intervention. And then most likely some more in depth counselling, to get to the route of some deep seated issues it's obvious that I'm harboring.
It was a great session, I was very honest and open, even though that can be hard. I know it's going to be a bumpy road ahead and I will have to put work in, but she said how resilient and strong I seemed, which is half the battle to overcome these horrible things!!

Physically I am still so concerned about my leg, it still occupies my thoughts 24/7. This waste I feel I can see & touch in the outer thigh, the constant rumblings, aching and horrible feelings, buzzing, vibrating, shaking & bubbling. The fact that you know, I can't stand on that leg without wobbling, the fact I can't squat with that leg. That there's a massive freaking hole in my flat wasting muscle there.
But as you said, I saw a doctor 2 weeks ago, who said my exam was totally normal, and I must hang on to that, though it is hard and my urge to run to the doctor with these "new" symptoms is so overwhelming. 

Hope you're having a good day
Hxx
 
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Offline ShawnW

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Re: Shaking aching shrinking thigh! Big MND fears
« Reply #13 on: August 19, 2014, 09:32:21 AM »
LadyH,

Therapy is a good thing.  It will help.  The question I would have for you is did your physician agree with your observations?  Did he see this "massive hole" you speak about?  Small dents become "massive wasting" in our eyes.  If a physician seen "massive wasting" he wouldn't blow it off.  So I must assume either 1) He didn't agree with your observations 2) You didn't show it to him 3) It's new
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My insight, thoughts, experiences or advice that may be posted in this forum are not meant as a substitution for the advice of your physician.

Want to know how to address your anxiety?
http://www.anxietyzone.com/index.php/topic,93402.msg521266.html#msg521266

Offline LadyH

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Re: Shaking aching shrinking thigh! Big MND fears
« Reply #14 on: August 19, 2014, 09:48:07 AM »
Hi Shawn,
It's new, as in I just noticed it a few days ago and so he didn't see it,
Hx
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Tags: MND ALS 
 

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