Status
Not open for further replies.

Mike001

Member
Joined
Jul 30, 2015
Messages
19
Reason
Other
Diagnosis
00/0000
Country
UK
State
UK
City
Cardiff
Ok, firstly I hope everyone is a well as they can be and thank you for being welcoming. I'll start off with apologising because I feel as if I shouldn't really post on here but I'm driving myself crazy! I'm a 26 year old male, 6'5, 12 stone, and slim (Don't know if that even has relevance) But i'll give you a little insight into what's been happening from the beginning .

One morning back in September of last year I woke up and I couldn't speak, all my word made no sense at all, it wasn't slurred, it was just a load of jumbled up words. That lasted about an hour and come back, so I was told to go to A&E and was treated for a TIA (Minor stroke).. I had a CT scan of my brain and an MRI, all my bloods taken, and it was ruled out by a neurologist of being a TIA and I was sent home. From that day thing's started to go down hill.

I started noticing I was kicking the floor with my right foot, and one of my toes kept losing sensation in it and still to this day it doesn't feel right and contracts and twitches. In a space of a few weeks I woke up on a few occasions with no feelings in my arms and then after 5 minutes it come back. I lost vision in my left eye and my hand, arm, face, lips, tongue went numb for around 30 minutes. I had a spasm in my left hand that was making it close up involuntary which lasted a few hours. My right thumb went numb for around 2 months, then the sensation come back. I was having different spots of burning sensations going to different parts of my body and full body involuntary spasms and limb jerks.


Now that's been over the last 10-11 months all intermittently (which I understand isn't the case with ALS, and I know sensory symptoms is not usually a sign) but this is the problem at the moment. The burning has stayed in my feet, calves and up my legs. That's been there for around 5 months and only seems to be there when I'm either sat or laying down. Now the last 2 months I'm getting constant multiple little fasciculations that started in right calve in a few spots, and now it's in my left calve and in the back of my right arm as well (where the burning has been) I fear the burning is my nerves being killed and the twitching is secondary to the muscle dying. I've noticed a loss of dexterity in my right hand and also jerking of the right arm. I have perceived weakness in my arms and legs, they get tired doing little tasks that require minimal effort like holding up my phone, they tire easy. I shallow breath and sometimes randomly get an involuntary gasp of air. I have phlegm constantly in my throat and I keep messing up my words and slurring.

I've had another MRI or my brain and C-Spine and all come back clear and MS has been ruled out. I have had all my bloods tested and all fine, no diabetes etc.. and I'm just driving myself INSANE constantly searching symptoms and my fears on Google (I know I'm a complete idiot for doing it, but I really can't stop it) I do suffer with health anxiety and I am a hypochondriac but please don't let that desensitize how real the symptoms are (If that's the right word). I will be the first to admit that, I just feel all of this is too much to be put down to stress and anxiety. The burning is horrific! Again, I really am sorry for being a pain, but I've just got nobody to turn to, and I can't see a way out of this rut I'm in. Please could somebody just speak to me, I know nobody can diagnose me, but I'm scared.

Thank you in advance, Mikey. P.S (sorry for the novel)
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
11,620
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Hi Mikey
So sorry it has clearly been a tough year. This just does not sound like ALS. Many are clearly NOT ALS like the jumbled words the trainsient vision loss the sensory symptoms. Twitching is so terribly non specific as to be meaningless. You need to continue to work with your doctors to figure this out. We could not begin to guess here. One thing to discuss with them though is whether the physiological issues have triggered a kind of conversion reaction that is marching alongside the physiological problem and confounding the picture
Good luck in finding your answers but , fortunately, they are not here I am quite sure
 

Mike001

Member
Joined
Jul 30, 2015
Messages
19
Reason
Other
Diagnosis
00/0000
Country
UK
State
UK
City
Cardiff
Thank you so much for the fast reply Nikki J, I really appreciate you taking your time out to even message me back. I understand that a lot of what I listed are not signs of ALS, from what I've researched, but it's just the muscle twitching in my clafs and lip that really flares things up. I know burning and sensory symptoms are not a typical sign, but then I saw that some people can get the burning. I am just stuck in a viscous circle and driving myself crazy.

As a lot of people will be able to relate, the DR's don't really take much notice and just try to chuck me medication to mask the problems instead of helping you get to the root cause. Depression and anxiety really don't help. I know ALS is HORRIBLE and it really saddens me to hear you and 5 other family members have had to deal/dealing with it. I hope really that you are as ok as you can be. Thank you again for messaging me back.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
11,058
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
I would make sure that CIDP has been ruled out. In theory, your presenting ep could have been a virus or bacterial infection of some kind, that triggered the later sx. Ruling something of that nature out requires an EMG/NCV, which you do not mention. It is unlikely but since you are suffering, I would dot the i's. If those tests are normal, psychology is more likely at play and I would see a therapist whose specialty is the mind/body connection. You do not need to live life "insane." All the best.

--Laurie
 

Mike001

Member
Joined
Jul 30, 2015
Messages
19
Reason
Other
Diagnosis
00/0000
Country
UK
State
UK
City
Cardiff
Hi Laurie, and thank you for your reply. I really appreciate it. Right, I did do some reading up on CIDP and that could definitely be to do with what is going on. I'm going to run that by the neurologist when I next see her. I have been told it's a 10 month wait for my EMG so I have decided to take it i into my own hands to get it done privately. So i've had to spend money I don't really have, but in the long run I can't deal with the wait. I'm scared to even have it done because I know an EMG will give me the answers I might not want to hear.

Just a question for either yourself, or anyone else that might know. If an EMG come back positive for damage, would that mean it was definitely ALS? Or are there other thing's that could give the same reading, if you know what I mean? Sorry to be a pain, I just have lack of understanding and couldn't find the relevant information on EMG's. Thank you again Laurie.

Mikey
 

GregK

Moderator emeritus
Joined
Jan 29, 2013
Messages
2,775
Reason
PALS
Diagnosis
11/2012
Country
US
State
CO
City
Colorado Springs
Read the sticky at the top of this forum titled READ BEFORE POSTING.
You'll find a great deal of info in it on ALS and a link to an EMG discussion.
 

Mike001

Member
Joined
Jul 30, 2015
Messages
19
Reason
Other
Diagnosis
00/0000
Country
UK
State
UK
City
Cardiff
Thank you Greg, I did read it before I posted on here. I've went to post about 30 times in the last month but couldn't find the courage to. I'm no good at grasping and taking thing's in. Wish I could break thing's down.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
11,058
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
There are many types of nerve damage. The kind that suggests ALS shows up on an EMG with a specific pattern. The EMG might show other kinds of nerve damage that would suggest other problems, or it could be normal. Since your muscles are still moving, and you say you've had problems for nearly a year, it's very doubtful that your nerves are dying, and fairly unlikely that they are seriously damaged. You could also ask your neuro if MG has been ruled out.

I wouldn't break the bank for an EMG since you are still getting around. Perhaps your primary doc could write a low dose of a drug such as gabapentin, that might give some relief if the pain you are experiencing is coming from a nerve disorder, while you are awaiting further testing. An anxiolytic might be worth trying as well.
 

Mike001

Member
Joined
Jul 30, 2015
Messages
19
Reason
Other
Diagnosis
00/0000
Country
UK
State
UK
City
Cardiff
It's just these annoying little twitches! They play havoc with my mind. I can feel the ones in my calves, even though they're really small, but the ones in my arm I can just about see with a light. It's just so strange that I have this burning for so long and then these little twitches started happening. I think having the EMG done is something I need to do just to try and get my head straight and hopefully it'll be the case of moving past it all. it's booked for next Saturday so I will put the results up once I get them.

I'm definitely going to write a few questions down ready for my next appointment with the neurologist. I just want to thank you and everyone again for answering my questions and giving me a bit of reassurance.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
11,620
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Good luck on Saturday. I really believe you are going to come back and say no ALS and hope it is fine or gives an easily fixed answer
 

Mike001

Member
Joined
Jul 30, 2015
Messages
19
Reason
Other
Diagnosis
00/0000
Country
UK
State
UK
City
Cardiff
Thank you Nikki, that really means a lot. I appreciate it.
 

Mike001

Member
Joined
Jul 30, 2015
Messages
19
Reason
Other
Diagnosis
00/0000
Country
UK
State
UK
City
Cardiff
Hi everyone, again thank you for replying. I went and had my NCS and EMG done yesterday and he showed me the results as they were happening. He said everything was fine and said he would send the results to my GP and to my email. He said definitely not even a chance of ALS and my MRI of my C-spine and brain said no MS. I don't understand how the twitches I'm getting in my legs didn't even show up on the EMG? Anyone know why? It was the news I needed, still have the burning and twitching, but now looking for something less sinister. Thanks again everyone for your time, you were all really helpful. Amazing people.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
11,620
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Thanks for letting us know. good luck in working this out with your doctors
 
Status
Not open for further replies.
Top