Old 10-27-2015, 10:17 AM #1 (permalink)
New Member
 
Join Date: 2015
City: Cardiff
State: Cardiff
Country: UK
Interest: Other
Posts: 19
Mike001 is on a distinguished road
Mike001 Mike001 is offline
New Member
Join Date: 2015
City: Cardiff
State: Cardiff
Country: UK
Interest: Other
Posts: 19
Mike001 is on a distinguished road
Angry Didn't think I'd be back 😔

Hi everyone, I tried to post on my previous link but it said that the thread was closed so this is the reason I've made a new one. I hope everyone is still alright and keeping well.

Right, unfortunately I've had to turn to the forum again for help or just to get it off my chest, as I don't speak to anyone about what's going on because it will only cause upset. I've still got the persistent twitching, mostly still the small barely noticable ones in my calves and feet arches. I get the random ones around my body but hardly at all. I have jerking in my right arm and a sort of contraction feeling. I've had this one twitch in the right side of my upper lip now (which I forgot to mention) for over 3 months now! It's been intermittent (twitches every 5 minutes or so throughout the whole day/night. Has anyone had this? I was told the right side of the face twitching isn't a good sign? The burning sensation in my feet and legs has been HORRIFIC in the last few weeks and now it's travelled into my chest and arms. I've also been having issues with my throat and pronunciation of my words. My mum picked up on it and I didn't realise that my speech was getting worse.

I went to my DR two weeks back and explained about my worries and also about the burning. He said that burning isn't something that happens in ALS. He said it's not unheard of, but it's not frequent seen. He explained everything I basically already know and then wanted to check me over. He asked about weakness and I said over the last 6 months my legs and arms have felt weak, I keep dropping things etc.. but I put it down to being clumsy, lack of sleep or just not keeping fit. I told him my EMG was clean but it was only a week or two after the twitching. He started looking at my muscles and asking me to do different things and he noticed on my right Bicep a sink/dent/dip in the muscle, looks like muscle has melted away, which I haven't got on the other side. Then on further examination he checked over my legs and on the same side (the right) he found a dip in my calf (where the twitching first started) that I didn't have on my left calf. I also have a tiny flutter twitch in my right hand to, the meaty bit by my thumb and now I can see it's a LOT smaller than the left one. He's put me on urgent to see my neuro and wrote her a letter to get me seen as soon as possible. I'm due to see the neuro on the 3rd of November anyway.

I had my blood results back (think it was my LDH) it was 233. I was told its abnormal level and too high. Apparently it indicates tissue/muscle damage? I think it's a CK or something like that he wants done next. I didn't really take notice of the weakness as I'm a thin build and I put it down to that among other things and the atrophy I didn't see until he spotted it and now everything's just dawned on me. I'm just a state. I've lost my job, my girlfriend is upset seeing the state I'm in and I have barely left my bedroom the last two weeks. Everything's gone down hill in the last 18 months, I just want to put a name to what's going on. I know it's no good, I know I need to take it on the chin and I know if it does turn out to be ALS then there's nothing I can do in my power other than deal with it. I don't expect anyone to be sympathetic, I'm just scared of what's to come.

All bloods have ruled out Lymes, Vitamin/Mineral deficiency, Hyperglycaemia, Thyroid. MS (brain & cervical spine) NCS - Negative.
Mike001 is offline  
Old 10-27-2015, 10:18 AM #2 (permalink)
New Member
 
Join Date: 2015
City: Cardiff
State: Cardiff
Country: UK
Interest: Other
Posts: 19
Mike001 is on a distinguished road
Mike001 Mike001 is offline
New Member
Join Date: 2015
City: Cardiff
State: Cardiff
Country: UK
Interest: Other
Posts: 19
Mike001 is on a distinguished road
Default Re: Didn't think I'd be back 😔

P.s sorry for it being so log and in block. It typed it on my phone and didn't realise it would be like a novel.
Mike001 is offline  
Old 10-27-2015, 10:23 AM #3 (permalink)
hjlindley's Avatar
Senior Member
 
Join Date: 2011
City: Richmond
State: VA
Country: US
Diagnosed: 10/2011
Interest: I have been diagnosed with ALS.
Posts: 764
hjlindley is on a distinguished road
hjlindley hjlindley is offline
Senior Member
hjlindley's Avatar
Join Date: 2011
City: Richmond
State: VA
Country: US
Diagnosed: 10/2011
Interest: I have been diagnosed with ALS.
Posts: 764
hjlindley is on a distinguished road
Default Re: Didn't think I'd be back 😔

The blood tests is CPK 3. Mine was elevated several years after symptomology. I had five EMGs and only the last one was positive. I have got burning and tingling in 1 foot but it's not the ALS, it's peripheral neuropathy because that leg is an inch longer than the other one. A neurologist experienced in ALS as a very specific set of exams he does before she makes the decision. The blood test is not accurate for ALS. Good luck to you.
Hollister
hjlindley is offline  
Old 10-27-2015, 10:30 AM #4 (permalink)
New Member
 
Join Date: 2015
City: Cardiff
State: Cardiff
Country: UK
Interest: Other
Posts: 19
Mike001 is on a distinguished road
Mike001 Mike001 is offline
New Member
Join Date: 2015
City: Cardiff
State: Cardiff
Country: UK
Interest: Other
Posts: 19
Mike001 is on a distinguished road
Default Re: Didn't think I'd be back 😔

Thank you for your reply Hollister, I really appreciate your input. The whole thing with the EMG and only finding it after the 5th time is what leaves me without faith in just one clear EMG. I don't take the clear EMG as comforting, the same way I don't with the whole 1 - 100,000 odds etc. I'm sorry to hear it took so long for you to get your diagnosis. CPK 3, that was the one! The burning I just haven't got a clue about, neither did the neuro. I guess I will get answers in the end, I might not like them, but what can I do. Thank you again for your fast reply and I wish you all the best also.
Mike001 is offline  
Old 10-27-2015, 11:39 AM #5 (permalink)
Atsugi's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2011
City: Orlando
State: Florida
Country: US
Diagnosed: 12/2010
Interest: I lost a loved one to ALS/MND.
Posts: 5,106
Atsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond repute
♥ Atsugi Atsugi is offline
Extremely Helpful Member
Forum Moderator

Atsugi's Avatar
Join Date: 2011
City: Orlando
State: Florida
Country: US
Diagnosed: 12/2010
Interest: I lost a loved one to ALS/MND.
Posts: 5,106
Atsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond repute
Default Re: Didn't think I'd be back 😔

Mike, it still doesn't sound like ALS to me. A while back, your neurologist reviewed your EMG and said "not even a chance of ALS."

Your posts here were reviewed here on this website by several VERY smart people with great experience in ALS, and they told you that you should be looking for something else, not ALS.

I can't tell you which disease to focus on, but you picked a doozy.
Atsugi is offline  
Old 10-27-2015, 12:15 PM #6 (permalink)
New Member
 
Join Date: 2015
City: Cardiff
State: Cardiff
Country: UK
Interest: Other
Posts: 19
Mike001 is on a distinguished road
Mike001 Mike001 is offline
New Member
Join Date: 2015
City: Cardiff
State: Cardiff
Country: UK
Interest: Other
Posts: 19
Mike001 is on a distinguished road
Default Re: Didn't think I'd be back 😔

Hi Atsugi, I noticed just now that you commented on my last post. I apologize as I've only just read it and couldn't reply as the thread was closed. Thank you for replying and also for replying today. I was really hoping that it wasn't but I am confused as what else it could actually be. (I know that only the neuro can confirm it) I just have a feeling that in a few months I'm going to be posting on here with the diagnosis. Hopefully you are right, along with anyone else that thinks it's not ALS.

I do understand that there are a lot of people on here that are very smart and have the diagnosis, or care/cared for someone with ALS, and I appreciate them/you even giving me the time and replying. I'm just confused. Until ALS is 1 million percent ruled out, I don't think i'm going to be able to keep myself from worrying.
Mike001 is offline  
Old 10-27-2015, 01:49 PM #7 (permalink)
Atsugi's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2011
City: Orlando
State: Florida
Country: US
Diagnosed: 12/2010
Interest: I lost a loved one to ALS/MND.
Posts: 5,106
Atsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond repute
♥ Atsugi Atsugi is offline
Extremely Helpful Member
Forum Moderator

Atsugi's Avatar
Join Date: 2011
City: Orlando
State: Florida
Country: US
Diagnosed: 12/2010
Interest: I lost a loved one to ALS/MND.
Posts: 5,106
Atsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond repute
Default Re: Didn't think I'd be back 😔

Oh yeah, I forgot. Reading your posts, it's clear that you have a major mood disorder. Get that fixed first thing, or you'll be destroying your life emotionally.
Atsugi is offline  
Old 10-27-2015, 02:07 PM #8 (permalink)
New Member
 
Join Date: 2015
City: Cardiff
State: Cardiff
Country: UK
Interest: Other
Posts: 19
Mike001 is on a distinguished road
Mike001 Mike001 is offline
New Member
Join Date: 2015
City: Cardiff
State: Cardiff
Country: UK
Interest: Other
Posts: 19
Mike001 is on a distinguished road
Default Re: Didn't think I'd be back 😔

Yeah, I do agree. I do suffer with depression and this whole experience hasn't helped matters of course. I'm taking Amitriptyline for that and the burning sensations. Two birds with one... tablet. Just this whole being stuck in limbo I'm finding more than difficult. Everyone at some stage is "in limbo" I just wanted to know if there was anyone else with or have/had similar symptoms.
Mike001 is offline  
Old 10-29-2015, 09:11 PM #9 (permalink)
Michellesews's Avatar
Member
 
Join Date: 2015
City: El Paso
State: TEXAS
Country: Uni
Diagnosed: 09/2015
Interest: I am a family member of someone with ALS/MND.
Posts: 100
Michellesews is on a distinguished road
Michellesews Michellesews is offline
Member
Michellesews's Avatar
Join Date: 2015
City: El Paso
State: TEXAS
Country: Uni
Diagnosed: 09/2015
Interest: I am a family member of someone with ALS/MND.
Posts: 100
Michellesews is on a distinguished road
Default Re: Didn't think I'd be back 😔

If you would like to have ALS, and it was possible, I would give my husband's to you. Maybe you really need a psychiatrist?
Michellesews is offline  
Old 10-29-2015, 10:45 PM #10 (permalink)
scaredwifetx's Avatar
Very Helpful Member
 
Join Date: 2015
City: Dallas
State: tx
Country: US
Diagnosed: 07/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 1,569
scaredwifetx has disabled reputation
scaredwifetx scaredwifetx is offline
Very Helpful Member

scaredwifetx's Avatar
Join Date: 2015
City: Dallas
State: tx
Country: US
Diagnosed: 07/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 1,569
scaredwifetx has disabled reputation
Default Re: Didn't think I'd be back 😔

To me it seems like you need someone to talk to and need a audience. You should find someone to talk to and join a forum but it needs to be a forum for anxiety and or depression. You do not need to be on this forum and it is upsetting to those of us who would give anything they have not to have ALS while you are wasting your life writing on forums where people are suffering so much. You need to get help and get off here. You have a life ahead of you so need to figure out how to live it instead of hanging out here where you do not belong and where we don't want you to have to be. Please seek the help you need.
scaredwifetx is offline  
Old 10-29-2015, 11:08 PM #11 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,304
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,304
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Didn't think I'd be back 😔

Mike, I'm closing this thread as you can see it is proving unproductive for you, and upsetting for others.

Losing a job and possibly your GF next isn't going to be fixed by anyone but you. You say you aren't speaking with anyone else for fear of upsetting them, but you've upset people here, who are dealing right now, up close and personal, with the very disease you fear. If you don't have a GP in whom you're confident, find another, as you are clearly in torment apart from any neuropathy that you may or may not have.

If/when you have a written diagnosis of MND, which seems increasingly unlikely, this will be a place for you. Otherwise, it is not. All the best.
lgelb is offline  
Closed Thread

Tags
arm, atrophy, back, brain, burning, emg, fasciculations, flu, hope, muscles, night, power, scared, sleep, speech, thumb, twitches, twitching, urgent, wanted, weakness


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
This really didn't suprise me AKmom General Discussion About PLS 6 01-13-2015 10:09 PM
What would have made me happy that I didn't do? MaxEidswick People With ALS - "PALS" 34 09-26-2014 07:59 PM
he didn't suffer anneo In Memoriam/In Memory of 14 07-30-2014 07:35 AM
Didn't want to be 'that guy' Energy1 Do I Have ALS? Is This ALS? 22 04-04-2014 05:14 AM
What a sucker punch...didn't see this coming! Uptown People With ALS - "PALS" 14 03-08-2013 07:47 PM
Absolutely freaking out, didn't know where to turn thedeu Do I Have ALS? Is This ALS? 5 01-06-2013 05:27 PM
Didn't exactly get the answers I wanted CGAR Do I Have ALS? Is This ALS? 21 01-29-2012 04:57 PM
The V.A. Didn't Forget After All! Zaphoon General Discussion About PLS 4 09-01-2010 11:10 PM
My wife didn't make it CAHPAH Current Caregivers (CALS) 34 05-26-2010 01:59 PM
it didn't work Theresa2004 General Discussion About ALS/MND 16 08-21-2005 11:08 AM


All times are GMT -5. The time now is 03:44 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016