Status
Not open for further replies.

Swimmer7

Member
Joined
Aug 5, 2014
Messages
13
Reason
Learn about ALS
Country
IRE
State
Dublin
City
Dublin
Hey All,

With your experience of symptoms and other people's posts, perhaps you could help shed light on what THREE neurologists cannot, please? I'm worried but not freaking out- life is like a box of chocolates eh?

37 yrs old/Male
Symptom onset:

9 months ago- mild non-specific tremor- it isn't debilitating: Ongoing.
6 months ago - Blurred vision, difficult watching fast moving tv/football. 'White Halo' and double vision with subtitles/credits. Stinging eyes: Ongoing.
4 months ago- left leg reluctant to keep up, sharp sole pain, calf cramping, now I can't walk for longer than a few minutes without being in agony. (calf, sometimes hip) I can walk heel to toe in doors, but outdoors (bigger steps), I carry my leg as gracefully as possible but not with a proper walking gait. Leg feels heavy after exertion but improves with rest. Leg is usually sore, 'disconnected feeling': Ongoing and debilitating.
2 months ago- left arm is weak, can't lift heavy items without disabling it for a while (recovers with time). The arm, hand and fingers have less dexterity than my right side, it almost feels floppy but can easily do small things (carry cups, open doors, drive, typing on a computer :). The arm always feels weaker and 'disconnected'.

Neuro Visits:
7 Months ago- clean neuro exam/clean brain MRI/clean bloods
2 months ago - clean neuro exam, no follow up recommended.
2 weeks ago- Left arm brachial reflex absent, left hand noticeably weaker than right on examination (first time this happened) as identified by neuro. Right side fine.
NCS: Left tibia: 13 Right Tibia: 17 (Whatever those scores mean)
EMG: Clean upper and lower.

So it's only in the last few weeks that clinically on examination anything odd has popped up. I've had leg pain since March/April and no sign of Atrophy (i'm measuring my calf/thighs to see if they stay the same and they have)- so on the basis of the other posts here, I'm going to assume my leg pain and walking difficulty is not ALS since the EMG was clean and symptoms were present.

Can you guys/gals relate to the above regarding MND or any illness? My neuro doesn't feel the need to review me any further yet my daily life is hampered by this relatively new arm weakness and the fact that I can't walk far without my leg getting tired and hot. HELP?! Thank you for your time.

Best wishes,
H.
 

dalvin

Senior member
Joined
Sep 12, 2013
Messages
954
Reason
PALS
Country
US
State
va
City
richmond
Read the stickies. See your pcp. LISTEN to what he or she says. We are not doctors here and can not diagnos you
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
This is an automated response:

read the **** STICKIES **** all is revealed there. 99.9% of your questions will be answered in the stickies.
 

Swimmer7

Member
Joined
Aug 5, 2014
Messages
13
Reason
Learn about ALS
Country
IRE
State
Dublin
City
Dublin
Thanks for replying, Dalvin. Yes, I've been reading through the stickies and they're very helpful.
Everyone has a different disease presentation to some extent and while i do listen to the consultant, I'm also conscious that many people are told they're fine, when in fact they're not. So I thought I'd leave a brief overview of my experience thus far to see if any one relates directly to it.
I'm also very conscious that for those who are already diagnosed, it must be very frustrating reading all the 'worried well' posts. I just don't think they've gotten to the bottom of my problem so a little experience/support (if not expertise) is always welcome from other people in similar situations.
Regards, H.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
11,754
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
You certainly need to follow up with your physician. To me, it does not sound like ALS/ MND. Your first 2 symptoms are unrelated your leg does not sound like MND as you report limited by pain. Pain is not a presenting symptom of MND
Your arm reports could be many things but an absent reflex is NOT MND Of course your EMG supports that as well.
It sounds like there are several issues that need to be taken care of. The arm, the leg and the vision. They may or may not be related but your GP needs to work this out. It may take time and patience but from what you have said this is not the place for you in the meantime
Good luck
 

Swimmer7

Member
Joined
Aug 5, 2014
Messages
13
Reason
Learn about ALS
Country
IRE
State
Dublin
City
Dublin
Nikki, thank you very much for taking the time to respond. I very much appreciate it. As you've succinctly and easily deduced, perhaps my symptoms are unrelated. For a newbie it's very confusing and of course you become overly sensitive to every symptom, but when you are familiar with the disease(s), as you unfortunately are, it's easier to see the gaps in the presenting syndrome.
I can't believe you're the 6th family member to be affected, that's beyond awful, and yet you still give time to people like me, thank you.

I appreciate that MND/ALS do not affect sensory nerves, but there is cramping right? That's what I get in my leg- hence I mentioned the pain.

With gratitude and good wishes,
H.
 

Kosmoskatten

Distinguished member
Joined
Nov 6, 2013
Messages
224
Reason
Other
Country
SE
State
None
City
Stockholm
Have you had a spinal tap? Full MRI of neck/spine?

It does not sound like MND, but my advice to you would be if you have not had these tests, is to talk to your neurologist about them. Have you been fully evaluated for Lyme? Reading through your symptoms and progression that comes to mind.
 

Swimmer7

Member
Joined
Aug 5, 2014
Messages
13
Reason
Learn about ALS
Country
IRE
State
Dublin
City
Dublin
Hey Kosmoskatten, thanks a lot for your response. I haven't had a spinal tap or neck/spine MRI. I was reluctant to have the spinal tap for obvious reasons, and my neuro consultant didn't insist on those tests so I let it go. I considered Lyme alright and might just ask my GP to run the bloods anyway as a precaution- though I've no memory of the rash/skin inflammation ever.
I'll look into these things, thank you!
 

Atsugi

Moderator emeritus
Joined
Jan 11, 2011
Messages
5,200
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
FL
City
Orlando
SWIMMER: If you're still here, I have a couple thoughts to add.

First, you don't have ALS. Nothing you related to us says ALS. I hope that the other posters have described adequately how true this is. If not, I would be happy to be as detailed as needed to show you you don't have ALS.

Second, many of the people on this site, while we are very happy to help, are typing with their remaining one finger or by moving their eyes along a grid of letters and phrases. It's difficult for many of our brothers and sisters to read and reply. I think you should ask for opinions and information from a different website--this one is for folks who have ALS and those who might.
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
This is an automated response:

#1 - Read the **** STICKIES **** all is revealed there. 99.9% of your questions will be answered in the stickies.


#2 if you think you have a motor neuron issue, see your PCP and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND experienced!

#3 We are not doctors or diagnosticians, but people who are dying from or caring for ALS people who often type w/ 1 finger or their eyes, etc., so replying to anxiety-ridden hypo's is a pita.

#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 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.

enough said?
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
11,196
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Swimmer,
Diplopia + weakness -- has myasthenia gravis been r/o? A single fiber EMG is usually done if the clinical picture and other tests support the possibility. But yes, you're in the wrong place. Best of luck to you.
 

Swimmer7

Member
Joined
Aug 5, 2014
Messages
13
Reason
Learn about ALS
Country
IRE
State
Dublin
City
Dublin
Thanks a lot, everyone. Your responses are reassuring and appreciate. I'll limp onwards and continue the search. x
 
Status
Not open for further replies.
Top