Old 05-15-2016, 06:43 PM #1 (permalink)
New Member (Say Hi)
 
Join Date: 2016
City: Glasgow
State: Scotland
Country: uK
Interest: I am interested in learning about ALS/MND.
Posts: 4
kisy is on a distinguished road
kisy kisy is offline
New Member (Say Hi)
Join Date: 2016
City: Glasgow
State: Scotland
Country: uK
Interest: I am interested in learning about ALS/MND.
Posts: 4
kisy is on a distinguished road
Default First post; sorry if I annoy...does this look like atrophy?

I'm almost 33, female, mother of 4. Two years ago (march '14) I had a 'neuro event', where I had electric shock sensation through my body, slurred speech, lost balance, then left leg would collapse when I tried to walk. My left calf felt like it was buzzing, half of my right calf felt the same. The buzzing moved up my left leg to my thigh and never left. the rest of the neuro symptoms went away and I was left with a collapsing left leg and a thigh that left like the muscle were constantly rippling (wasn't visible).

I went to a&e, they did a ct scan and lumbar puncture. both clear. found to have b12 deficiency and started injections.

As time went on, my leg became stronger and it stopped collapsing about 6 months later (very occasionally would feel weak). The sensory symptoms continued in my thigh and actually intensified. There was an area the size of my thumbprint that if i pressed (gently) would increase sensory stuff in the whole thigh. by the december '14 it had passed the uncomfortable stage to the pain stage. my whole thigh was cramping and no stretches would help.

i was sent for an mri of head and neck in july(??) '14 and saw a neuro in the weeks after. No lesions found on mri. Diagnosis of functional neurological disorder. I asked whether it could be from b12 deficiency, but 'the level of damage needed for my symptoms would be visible on head and neck mri' apparently. I asked for emg on my leg, he said he would request test, 'if only to put my mind at ease and accept diagnosis' he said nothing would show up, but if it did, i would see him again.

I finally get emg on leg in Jan '15. This showed 'evidence of nerve repair' and received letter from near saying 'it was probably from an old injury, see ya!'. I finally got an appointment with him, only for him to tell me to leave because i wanted further tests, as 3 GPs had said i needed an mri of lower back. He eventually referred me to another neuro and i saw her in dec '15, who arranged mri of lumbar spine in jan '16

***sorry this is taking so long***

bulging disc at l4, but no nerve compression. found to be vitamin d and folate deficient, treatment started. i have another appointment with her in june

My left thigh has continued to increase in pain and twitching of the muscles. It is constantly tight and in the very few times it is relaxed (after a hot bath for example) it feels like i am missing a massive chunk of muscle. it's really difficult to describe. it will collapse on itself.

in jan this year i went to the doctor because i felt like i had something stuck in my throat. he couldn't see anything. it's never gone away and the last few weeks i have had sudden 'attacks' of speaking like i'm losing my voice and like i have to cough to clear my throat. it lasts maybe an hour and then i go back to normal.

ok, so, i'd better add my 'atrophy' photos.
Attached Thumbnails
First post; sorry if I annoy...does this look like atrophy?-img_7365.jpg  
kisy is offline  
Old 05-15-2016, 07:13 PM #2 (permalink)
New Member (Say Hi)
 
Join Date: 2016
City: Glasgow
State: Scotland
Country: uK
Interest: I am interested in learning about ALS/MND.
Posts: 4
kisy is on a distinguished road
kisy kisy is offline
New Member (Say Hi)
Join Date: 2016
City: Glasgow
State: Scotland
Country: uK
Interest: I am interested in learning about ALS/MND.
Posts: 4
kisy is on a distinguished road
Default Re: First post; sorry if I annoy...does this look like atrophy?

oh, need to add, i walk with a limp. i cannot move my leg the way i used to and as time goes on, my movement is becoming more restricted. it feels like i'm walking through concrete. and, worryingly, i can feel it starting in my other thigh. different area, but if i walk more than normal, i am starting to feel the heaviness and cramp i have with the other thigh. for the past six months i have been getting an agonising stabbing pain in my thigh. started out as once in a while and now every day. always the same area. i was on 2700mg gabapenton each day, switched to pregabalin as the gab wasn't stopping all the pain. pregabalin isn't either, but thought i'd give it a fair go (started it in feb this year).

thought i should maybe direct people to where i think there could be atrophy. the leg on the right (my left leg) there is an indent below the hip down towards the knee. also, the skin on the front of my thigh is looser than the right and just sort of droops on the knee.

if i tense up both thighs really hard, then relax, the left thigh doesn't relax and that is how my thigh is all the time, tensed up.
kisy is offline  
Old 05-15-2016, 08:18 PM #3 (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: 4,872
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: 4,872
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: First post; sorry if I annoy...does this look like atrophy?

Kisy,
You have a lot going on, but I can't connect it with ALS (which is good!) You shouldn't remain on that kind of pregabalin dose, which has its own liabilities, without more of a diagnosis. Nor does it make sense that you would have multiple nutritional deficiencies at your age, that create such severe symptoms. I really can't discern anything in your photo.

I would suggest that you see a consultant at a university medical center. Perhaps one of our UK members will chime in.

Best,
Laurie
lgelb is offline  
Old 05-15-2016, 09:08 PM #4 (permalink)
New Member (Say Hi)
 
Join Date: 2016
City: Glasgow
State: Scotland
Country: uK
Interest: I am interested in learning about ALS/MND.
Posts: 4
kisy is on a distinguished road
kisy kisy is offline
New Member (Say Hi)
Join Date: 2016
City: Glasgow
State: Scotland
Country: uK
Interest: I am interested in learning about ALS/MND.
Posts: 4
kisy is on a distinguished road
Default Re: First post; sorry if I annoy...does this look like atrophy?

thanks so much for your reply. i think i know, deep down it's not mnd, but i hate not knowing what's wrong and just want it to stop or at least stop getting worse.

can you not see the indents on my thigh? they weren't there before and it's at those spots the tightness and cramping is worse.

another non-mnd factor would be my reflexes. my knees are only slightly present with reinforcement. i had a medical a few weeks ago (regarding a personal injury claim;a car went into the back of me last year and had awful whiplash) and my ankle reflexes are now both absent, even with reinforcement. and he said i had 'equivocal planters'.
kisy is offline  
Old 05-16-2016, 01:12 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: 4,666
Atsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant future
♥ 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: 4,666
Atsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant future
Default Re: First post; sorry if I annoy...does this look like atrophy?

Kisy, you really didn't mention anything that had anything to do with ALS. Your neurologists know it, too, and I think you already knew that before posting here.

Being ALS-free, you should go elsewhere for further answers. Our mission is ALS, and our resources are limited.
Atsugi is offline  
Old 06-02-2016, 10:57 AM #6 (permalink)
New Member (Say Hi)
 
Join Date: 2016
City: Glasgow
State: Scotland
Country: uK
Interest: I am interested in learning about ALS/MND.
Posts: 4
kisy is on a distinguished road
kisy kisy is offline
New Member (Say Hi)
Join Date: 2016
City: Glasgow
State: Scotland
Country: uK
Interest: I am interested in learning about ALS/MND.
Posts: 4
kisy is on a distinguished road
Default Re: First post; sorry if I annoy...does this look like atrophy?

Sorry if this annoys you again...

I spoke to my neurologist (have appointment with her next week) and she said the data from the EMG from January last year showed reinnervation and a large potential wave when my left thigh was tested. Said b12 wouldn't have called the nerve damage as that would cause regeneration, not reinnervation. so that means it was motor axon damage?

I was at the GP a few days ago and showed him my legs and he said there is a definite difference between the legs and will be a result of 'whatever is going on with the muscles' as the dents and thinning of the muscles (my lower right leg and foot have also lost mass, as well as different parts of each hand and right forearm) are only in the places where i get pain, cramping, spasms and 'buzzing'.

i do have clinical, not perceived, weakness of my left leg and have done for two years.

i'm not imagining the thinning and 'dents' and i do not WANT a diagnosis of any disease/disorder, but i DO want to know what is wrong with me and it seems no matter where else i look, i end up back at MND
kisy is offline  
Old 06-02-2016, 02:04 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: 4,666
Atsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant future
♥ 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: 4,666
Atsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant future
Default Re: First post; sorry if I annoy...does this look like atrophy?

Not sure what we can do for you today, Kisy. Your neurologist can advise you from here. A bunch of dummies on the Interwebs can't examine you.

I can tell you that pain, cramping, spasms and 'buzzing' are not ALS symptoms. Plus, if ALS began in you 2 years ago, the odds are that you would be dead or very disabled by now.

You doctors might find other things--not fatal things.
Atsugi is offline  
Thanks from
starente15 (06-02-2016)
Old 06-02-2016, 03:02 PM #8 (permalink)
Very Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 1,967
KimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud of
KimT KimT is online now
Very Helpful Member

Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 1,967
KimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud of
Default Re: First post; sorry if I annoy...does this look like atrophy?

Hi Kisy,

I think you should follow up with your neurologist and ask him all the questions that are concerning you. We can't do anything more here in the way of diagnosing what you have but your doctor can.
KimT is online now  
Old 06-02-2016, 04:24 PM #9 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 9,689
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is offline
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 9,689
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: First post; sorry if I annoy...does this look like atrophy?

Ditto Mike and Kim

You have a neurologist appointment. Rather than coming here, sit down and make a careful list of the questions you want to ask, your concerns and fears, and anything you want checked further.

Be prepared for the appointment, then follow what you are told there. Doesn't sound at all like ALS. That doesn't mean you don't have something going on.
affected is offline  
Closed Thread

Tags
age, atrophy, back, balance, cramping, diagnosis, emg, female, increase, mri, muscle, muscles, pain, sensory symptoms, slurred speech, speech, symptoms, test, tests, treatment, twitching, vitamin d, voice, wanted


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
Is this Atrophy? Andy Cap Do I Have ALS? Is This ALS? 12 01-02-2016 03:39 PM
Bulbar question - sorry to annoy you all DaveCH Do I Have ALS? Is This ALS? 4 12-03-2015 11:58 PM
Atrophy chesterjethro2 Do I Have ALS? Is This ALS? 2 05-22-2014 08:31 PM
Does this look like atrophy? Manyquestions Do I Have ALS? Is This ALS? 18 03-03-2014 02:01 PM
Atrophy Amylou29 Do I Have ALS? Is This ALS? 13 02-20-2014 12:20 PM
Atrophy and PLS? AKmom General Discussion About PLS 4 06-17-2013 02:40 PM
My Dr said about atrophy joebing Do I Have ALS? Is This ALS? 11 04-30-2010 08:49 PM
atrophy rjteach Do I Have ALS? Is This ALS? 21 07-07-2008 06:10 PM
Could this be atrophy? peanut78 Do I Have ALS? Is This ALS? 14 11-18-2007 08:37 PM


All times are GMT -5. The time now is 09:45 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