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jfit

Member
Joined
Feb 21, 2012
Messages
15
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Learn about ALS
Country
AU
State
nsw
City
sydney
Hi everyone, I have been on here lookinbg at these posts for a few weeks now and am actually loathed to be posting here about the do I have's and asking ppl who actually do have to face the terrible facts of this disease on a daily basis about it, but waiting for my next Neuro app is driving me insane and it is really impacting my poor kids with me being in such a frazzle so I guess Im just going to post.


For a few months I have noticed that my right side has felt different to my left I couldn't put my finger on it so I just ignored it. I started noticing trouble coordination my right hand like when putting a fork into my mouth sometimes missing, toothbrush flying out of my mouth into my cheek and so forth. I am having more and more instances where my foot just gets caught on the ground and I stumble. Its not constant but it happens more frequently now.

I do sometimes find myself out of breath for no reason and like its hard to pull a breath in, I have had whooping cough in the past so this may not even be a symptom just a residual affect of this.

I have always been a good typer and can touch type pretty well, but a few months ago I noticed that now I hit the key to the right all the time when I am not looking at the keyboard and cannot touch type with much accuracy anymore.

I am having muscle cramps in my legs and arms, more so on the right side but also the left. I also have twitches but they are all over twitches that only last for a few moments so I believe these are nothing to worry about from what I have read.

The past few weeks my muscles in arms and legs have bee fatiguing very very easily just walking, or brushing my teeth or writing seems to be exhausting and I have to have a rest. When writing my hand seems to get very stiff and like I am unable to open it very well after writing for a while.

My joints hurt in my fingers and ankle. This has been happening for over a year now though and comes and goes in severity. But my right ankle has started hurting constantly and it runs down into my foot and up into my calf. I feel like I always have to crack it for some reason.

My legs after sitting and resting are stiff and hurt a lot when I first get up and it is hard to move for a bit until they kind of warm up I guess. My legs and arms feel heavy on and off.

Also I know these symptoms arnt really part of MND but I will include them anyway. I am having a lot of memory problems and also ALOT of problems when looking for the right words, I say things like dinglebell when really Im trying to say doorbell, or just go totally blank and have to wait and try and remember what I was saying.

I also have slurred speech and trouble getting people to understand me latley like Im mumbling I guess.

Can anyone relate to this, or have any advice. I have had alot of tests and am currently waiting to go back to the neruo after getting MRI and CAT scan which were both clean although they were done without contrast. I guess he will be doing a EMG on my nect visit. Do they hurt?

Thanks in Advance

oh and my limbs mainly my arms go to sleep very easily now when I just lean on them they fall asleep or I wake up laying on my back my arms on my stomach and they are completely dead its worry's me alot. And so do my legs but is mainly only when I am sitting on the toilet (weird I know).
 
Oh I forgot to mention the muscle fatigue and cramping showed up in all four limbs at once, is this typical of MND.
 
ALS wouldn't present in all 4 limbs at once, no. But, lots of things can. I'd suggest starting with your GP and go from there. IF an EMG is ordered, they aren't any fun--but not excruciating either.

Als normally causes weakness--as in inability to do something like button a shirt or open a tube of toothpaste, or in the foot, stumbling and falling from drop foot. It's progressive, symptoms don't come and go. They come and get worse.

If your speech is slurred to the point that OTHERs notice it--then your doctor will address that. I'd suggest following the suggestions of your doctor. Diagnosing neurological issues can take quite a while. ALS is a diagnosis of exclusion. All other possible things are ruled out.

There are several things that can cause sensory issues such as numbness and tingling--that are not ALS.

You said you had an MRI, but not what was scanned. They will also likely do blood work. B-12 is a common cause of some sensory issues in the limbs, for instance.

Good luck--and try not to worry til you know there is something to worry about.
 
Yes, I can relate and have many...but not all symptoms the same as yours. EMG's are not fun- but you will survive. Sounds like you are having priopreception problems...missing your mouth with toothbrush...basically it means not knowing where a body part is in space even though you should. You can test this yourself if you like- put a pen on a table in front of you...look at it. Then close your eyes and grab the pen...if you are fine you will grab pen...if you miss you are having priopreception problems...

Here is a list of things I would suggest getting tested or done:

-MRI- W/Contrast- this is needed to make sure your blood flow is working correctly...actually I am surprised they didn't do this in the first place...it should be of brain and neck at least.
- All vitamins/heavey metals- blood work tested
-Do you have any diseases running in your family - ex. stroke, hunigtons disease, heart disease, MS?-
- Do you live in a tick area or have a dog?- Check for lyme disease.
- Thyroid needs to be checked- specifically T4 levels
-Potassium...should be done in normal blood work but even boderline high or low can be a problem.

- Finally, after all of these, if they come back I recommend these tests...they are expensive so these are more towards the end of the diagnosis period: Wilson's disease( basicailly too much copper in your system), Ataxia blood panel, and Hungitons chorea blood panel. Last two are genetic tests...you will need insurance...if you don't it is literally thousands of dollars so like I said...last result .

Basically, there are thousands of neuro and muscle problems out there...many of which haven't been discovered yet . I do recommend going to Physical Therapy as it will help with priopreception and then you have at least a neuro and another physician working on trying to find out what is wrong. Also, it may help with cramping, muscle problems..and getting you to walk around. This is just the beginning of the journey to finding out what is wrong...so as hard as it is, be patient.

Good luck to you.

P.S. If you don't mind, or want more on my experience since we are pretty close to the same story...friend me on here, and we will PM each other.- Kel
 
How old are you, jfit? And are you male or female?

What has your primary care physician suggested might be wrong with you?
 
Hi all thanks for your respones.

I have had vit b12 test done thats fine.

I am going to get my thyroid test back today as they have re-tested it because they noticed although it was within normal range it had dropped from 1.2 to 0.9 the last time I had it done, so she done a few different tests. I had a MRI of the brain and upper neck, I was surprised it was without contrast also but hey what can you do. I am in Australia and on a pension so tests are not really a problem for me as they are all covered by my medicare, I just have to pay for the actual Neuro app, but get most of that back, so if all else fails I will ask for them tests. I haven't got a history of any neuro problems in the family but do have breast cancer and heart disease.

I am 31 and female. I tired the pen thing and I was able to grab it.

Thanks again.
 
Oh and they haven't really said just umm and arhed without really saying anything. MS was a possibility but has been ruled out with clean MRI. As was nerve problems in the neck but that was also ruled out. I have seen my neuro twice before but am going back in 3 months as he has been away and I cant get it until then.
 
I just got my thyroid and blood tests result back. There all fine so now I have to wait again for the Neuro app.

Regards Julie
 
I also have recently had a holter and they have found some supraventricular eptopic beats so I am getting that looked into as well, I know this has nothing to do with ALS but just thought Id add it in case it has any relevance for anything else.:|
 
Ah, Julie. Problems with the heart have to do with your problems....not AlS in particular, but you haven't been diagnosed with it yet!

In fact, all the problems you described could all be related to a heart issue...I was throughoughly tested in the heart when the dr knew I had similar problems and he said it could represent that... Definately, follow up on this lead...
 
Thanks for the info, I will def follow that up I have a cardio app today. I have something else that happens to me also, which I know is not ALS related but I am going to put it in my thread i hope that is okay. About a year ago I started waking u with a racing heart, a weird sensation in my stomach like it was dropping and then a huge intense hot flush. This waxed and waned and the symptoms change slightly ever so often for example the hotflushes stopped and were replaced with a electric shock type feeling running down my left side. I would be left with a tingling numbness in that area for a few hours, they have progressed into somewhat unusual episodes which my doctors are perplexed with. I will get this sudden overwhelming feeling that I cant stay awake and will fall in and out of what I call consciousness but Im pretty sure Im going to sleep not falling unconscious? Then just after I fall asleep I will get this sensation my head goes funny, I jolt wake sometimes forget who I am where I am who my husband is, then my heart starts it just races its not anxiety as it has been happening so long I am usually calm about it now, but alot of time I have a weird buzz in the right side of my head and feel like I am about to convulse or fall unconscious sometimes I cant even lift my head off the pillow, it lasts about 60 to 90 seconds then I usually break out in a sweat and usually it dosnt happen again. I usually now when an episode is imminent because I get a strange sensation in my heart area before the whole falling alseep part starts. The big ones with the racing heart and so on only happen just after I fall asleep. As mentioned I have had MRIS and cat scans, and also an EEG which I didn't have an episode when it was on but it found nothing unusual. I know this has nothing to do with what I was first referring to that is all new this is an older problem that I have had for a while and thought Id take a shot at anyone knowing what this sounds like as my docs are at a lose and I am getting very weary and scared about what it happening to me.

Thanks Julie
 
That is definately a weird symptom. Is it possible you might have an atypical seizure? (I would say it might be this because of the confusion after waking up, and the weird body sensation upon 'waking'. )

Racing heart, and 'electrical' feeling down left side is again example that something is going wrong with the heart.
 
autonomic dysreflexia........causes the weird and not so wonderful....and more than a little dodgy.......look it up babes then ask about it...............................johnno
 
Thank you Km and johnny for your reply's. I am currently waiting for a event monitor which i will have for 4 weeks to see if we can get any more info on my heart problem. I have noticed a change in sensory feelings in my hand and arm also, I am aware it says with ALS there is no changes in touch or feel, but there is conflicting information on this all over the place. I do have a question with the muscle fatigue that some people had with ALS in the early stages if they had this symptom before the weakness began. Did it get better after rest, did your muscles feel better again after a few minutes sitting down or where they always fatigued? Or did this symptom come and go in severity again I am aware that once a symptom starts with ALS it may plateau but never gets better, but again I have read conflicting reports on this in the early stages......

Regards
 
I am aware it says with ALS there is no changes in touch or feel, but there is conflicting information on this all over the place.

The reliable information about this topic -- whether or not ALS presents with sensory symptoms or not -- is not conflicting. Sensory symptoms very rarely occur with early ALS and, given the fact that ALS is a very rare disease to start with, "very rare sensory symptoms" probably means a literal handful of cases since the disease was identified more than a hundred years ago.

When you start dealing with practical numbers, the chance of having ALS/MND cause sensory symptoms is essentially zero. But you're not interested in practical numbers, are you? You need for something serious to be wrong so that you can justify your silly behavior.

I am aware that once a symptom starts with ALS it may plateau but never gets better, but again I have read conflicting reports on this in the early stages

If you would stop reading information that is not reliable about ALS, you might give yourself a chance to believe that you don't have ALS/MND. When real ALS symptoms go away, something worse takes their place. Muscles stop fasciculating because they become paralyzed and don't move any more -- ever. Muscles don't cramp any more because they become paralyzed and don't move any more -- ever. Reflexes go away because the muscle becomes paralyzed and doesn't move any more -- ever.

Do you see where I'm going with this?

If you get better after a rest, then your muscle problem is not being caused by ALS. What is causing your problems -- none of us know. The only thing we do know for sure is that you need to direct your questions to the doctors who are treating you because that's where you're going to get real answers.
 
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