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CKennedy

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Joined
Sep 14, 2014
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Reason
Learn about ALS
Country
UK
State
England
City
York
Below are a timeline of my symptoms, I would appreciate any feedback on

- Nov 2013 - stiff neck, lightheadedness, blurred vision (saw a neuro due to concerns over possible stroke!) - had MRI - all clear

- Feb 2014- twitching started all over body and has been going on ever since. It was more steady in the beginning and now is more rapid-fire but probably slightly less often as well.

- May 2014 - started waking up with stiff hands

- June 2014 - feet started to hurt after runs

- July 2014 - started feeling sluggish playing sport and just not quite right

- August 2014 - hands started to feel strange (not quite right when using mouse at work type thing), right hand first then left hand only a few days later. this has since developed into cramping of fingers, wrist, the pain is migratory.
- in the past six weeks this has developed further along my arms, into my shoulders and also my back. again the cramping gets worse if i have used these parts of my body.
- Also the legs have got weaker. Walking has felt sluggish, I was running quick half-marathons last year and my legs have felt very weak recently. Played football with my kid in early August and got horrendous cramps - ended up in A & E that night which was a complete waste of time.

September 2014 - joint popping/cracking - this has gone from being normal to off the scale in around 2 weeks! - it is happening all over my body as well. in my hands, feet, ankles, knees, shoulders, elbows, everywhere!

Muscle cramps - again, this has been fairly recent. cramping in arms, feet and shoulders a lot, and legs getting it badly at night. Neck is also stiff.

No sign of any weakness or atrophy.

I Went to see a Neuro in mid-August and he did the full exam and put my symptoms down to anxiety and did not recommend any EMG. Went back 2 weeks later and was dismissed within 20 mins.

I feel like going for a second opinion as I feel the symptoms are still progressing.
 
Hi CK I've read your timeline carefully and am happy to tell you there are NO symptoms of ALS/MND showing there.

Guess your doctor was right!

I hope by working with your doctor you can find the cause. Anxiety for example is quite a serious health condition and should be addressed quickly as fortunately it can be treated.

All the best, you can relax about this one at least and find somewhere else to list your symptoms.
 
Doesn't sound like ALS for sure. So, other then say that we can't be of much more help. Have you checked with a rheumatologist (sp?) to rule out possible arthritis. Good luck to you. But, I'm glad that it looks like you don't belong here.
 
Does not sound like ALS to me.

Your symptoms may be progressing, but hey don't sound like symptoms of ALS.
 
- Nov 2013 - stiff neck, lightheadedness, blurred vision (saw a neuro due to concerns over possible stroke!) - had MRI - all clear

- Feb 2014- twitching started all over body and has been going on ever since. It was more steady in the beginning and now is more rapid-fire but probably slightly less often as well.

- May 2014 - started waking up with stiff hands

- June 2014 - feet started to hurt after runs

- July 2014 - started feeling sluggish playing sport and just not quite right

September 2014 - joint popping/cracking - this has gone from being normal to off the scale in around 2 weeks! - it is happening all over my body as well. in my hands, feet, ankles, knees, shoulders, elbows, everywhere!

all of these pretty much match exact symptoms i've had in that order, however over a much shorter period (3 weeks all up)

do you experience any twitching in your sleep? or sleep problems?

i've had full bloods, mri, ncs & emg..

neurologist found a definete abnormality in the emg but assured me it was not als, his thoughts are more likely a muscular disorder, or a virus/sinus infection attacking nerves.
 
Hi -- ALS/MND is a scary disease to consider/fear. We empathize. This note is not to deter you from your investigations, but just so thoughts on how we can help each other ...


Here are some first considerations that may help:

#1 - Read the STICKIES at the top of this forum. Many questions are answered there. 99% of new questions are addressed.


#2 We are not doctors or diagnosticians, but people who are dying from or caring for people with ALS. Some of us have to type with one hand, one finger, via dictation, or even with our eyes, so reading/replying to the anxiety-ridden can be very tiring.


#3 if you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!


#4 an EMG, properly done, is the gold standard test for ALS. But also, an abnormal EMG can indicate HUNDREDS of other, non-fatal, diseases. So listen to your doctor.


#5 ALS does NOT present with pain, cramps, or fatigue. In ALS, you feel perfectly normal but your muscles simply won't work. Typically, the first sign of ALS is a foot or a hand that inexplicably just won't lift up. It doesn't hurt or feel weak, it just is limp. That is paralysis.


#6 ALS is about failing, not feeling, so forget the "feeling" symptoms


#7 If your main issue is twitching go to the bfs forum. If you have weird neuro symptoms try neurotalk. There are also forums for health anxiety.


#8 Your doctor is wise to look at other diseases. ALS is rare. In order for it to be ALS, it has to be nothing else.


#9 Many of us cough/gag/choke and/or can no longer speak. It is difficult to have anxious people constantly chasing this disease, when we can't escape it. There seems to be this cult of ALS wannabees/groupies. You don't want to fall into that bucket do you?


#10 Anxiety can be a real problem that can endanger your physical health. It is what leads many folks here to this forum -- it is a self-fueling fire. Try to avoid using google and/or this forum if you can -- if you cannot stay away and off this forum it should tell you something important!


Lastly, if you are still interested, go to alsa dot org or mda dot org ...


We sincerely hope you do not need to be here! But find out first. If you do need to be here let me say "Welcome, sorry you are here!"


-----
Max - Monday, August 18, 2014 12:03:01 PM
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.
 
Go see a Rheumatologist ASAP. ...you welcome!
 
Thanks for all of your replies.

Symptoms are persisting and progressing so I need to get to the bottom of this. I've got another doc's appointment arranged now so can quiz him on the Rheumatology route.

All bloods came back normal from before.

Steven89 - Yes, had problems with sleeping due to twitching about four-five weeks ago but guess the feelings are now more normal and sleep has been much better recently.
 
Thanks for all of your replies.

Symptoms are persisting and progressing so I need to get to the bottom of this. I've got another doc's appointment arranged now so can quiz him on the Rheumatology route.

All bloods came back normal from before.

Steven89 - Yes, had problems with sleeping due to twitching about four-five weeks ago but guess the feelings are now more normal and sleep has been much better recently.

everytime you write something it sounds more like what i'm going through, i was having bad sleeps for the first few weeks and have started getting better sleeps again.

i'll PM you my email as i'd like to hear if you get to the bottom of it before me, I think we should stop annoying the others on the forum as they're sure we don't have als
 
Are they gone yet? Are we safe?
 
Mediasmart: Too funny!
 
>Are they gone yet? Are we safe?

:)
 
1) I think we can answer or recast questions without baiting or ridiculing the afflicted (in some sense, all DIHALS posters are indeed afflicted). I bailed on the als.net forum for that very reason but would prefer to stick around here.

2) Since finding MND-savvy neuros is seemingly an issue for some of those in limbo, would it be possible to add the link to my clinic map to one of the stickies? Just a thought.
 
Ha. Seeing as you asked.

Current status is cramping in many parts of the body along with plenty of twitching as well - started on Amitriptilline just over a week ago and now get some relief from the cramp during the night along with some sleep!

I've also taken the advice of the forum and have not been worrying as much despite feeling that something is definitely not right.
 
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