Terrified About Systems

[Alyoop]

Brenton sorry about the brain atrophy issue. Hopefully it is very mild. It is not associated with ALS as far as I know, someone else may be able to comment. I think if ALS caused brain atrophy, then it would come at a more advanced stage of the disease, probably showing up as frontal temporal dementia, but not 100 % sure.
It also can show up in advanced ms, but again not likely as your brain showed no ms lesions so that's good also.

It is good that you have a referral to a neurologist, who will hopefully get to the bottom of it.

Best of luck Aly

 

[trfogey]

Got my MRI results back this from my GP this morning.

MRI was abnormal in that I have mild cortical brain atrophy, and some atrophy in the vermis. Can someone possibly give me some insight into what that might be / mean? He's referred me to a Nuero.

And is it related to ALS?

Did you ask your GP these questions and, if so, what did he say? If not, why didn't you ask him and when are planning to ask him?

You are paying your doctors for the answers to these questions. Why aren't you making them earn their money?

 

[brentonjb]

I actually talked with him for a bit. He was a very nice man. He answered a lot of my questions and preformed a very brief neuro exam, as far my as walking and reflexes are concerned. Said everything was normal, at least in terms of nothing that would indicate I have ALS or problems with my balance or strength.

That being said I'm still having the twitching and stiffness. No longer of my left shoulder, but now it appears to be affecting my left leg. It's coming and going so I suppose that's a good sign? With everything I've read, diseases like ALS do not come and go and just progressively get worse over time.

The atrophy thing has got me down. Although he said that MRI readings can be subjective, so a Neuro is better suited to tell how severe "mild atrophy" actually is. I'm a young adult by definition, and was also diagnosed with ADHD at a very early age. I had been taking medication (ritalin / concerta) up until about junior high school for it. There's an apparent connection between ADHD medication and brain atrophy in young adults, which my doctor and I discussed.

Ultimately I'm really not sure what to make of it all. I'd like to think I don't have any serious disease, but anytime you have limb weakness and twitching I suppose that's a cause for concern, in addition to the atrophy. I guess I'll know more by Tuesday.

 

[Alyoop]

So Ritalin can cause brain atrophy and the docs dish it out like candy! These so called woodier drugs have a habit of coming back to bite us on the ............
If that's so, then likely its the atrophy culprit.
You will get better answers from the neurologist. I have had the brief examinations and they tend to miss things. So hang in there.
Aly

 

[brentonjb]

I have had the brief examinations and they tend to miss things.
Aly

Thank you for the response Aly.

Though your quote doesn't help much for my anxiety / fears of ALS.

 

[Natural]

I have bulbar ALS. I understand your symptoms and reasons for being concerned very well. It is very scary to think about having a fatal disease. Several of your symptoms could lead you down a path of speculation that is a never ending downward spiral of fear. Until you have an EMG done by at least two qualified Neurologists, I would not accept any diagnosis as final. I know of several folks with Lyme disease. It is one of many diseases that mimics ALS, but if caught early is very treatable.

Prepare yourself for the worst and hope for the best is always good advice in these circumstances. I have found that keeping positive may well be the best definition of true strength for any person facing such difficult issues. The glass is always half full for me. I hope it truly is for you.

 

[brentonjb]

I appreciate the kind words Natural. I'm not sure what exactly is going in regards to my symptoms, but I'm really scared.

 

[Alyoop]

I wasn't trying to worry you more. People come here and ask do I have ALS? Mostly the answer is no, like in your case. We are not saying that you do not have a problem.
A quick neurological examination by a general physician can fail to pick up things that a neurologist picks up. However if your reflexes were normal, then it is doubtful that your feeling of being stiff, will be coming from an umn issue. ALS will not come and go. The twitches without clinical weakness means nothing.
So you need not be scared about ALS. I am sorry that I have increased your anxiety, it was not my intention.Let us know how you get on.
Aly

 

[trfogey]

So you need not be scared about ALS. I am sorry that I have increased your anxiety, it was not my intention.Let us know how you get on.
Aly

Aly,

It suits brentonjb to be scared of ALS. He's comfortable there. He has talked himself into believing he has ALS without the inconvenience of, you know, actually having ALS and the progressive symptoms that go with it.

And it will only be the neuros and thousands of dollars worth of tests and examination costs that will ever move ALS off center stage in his anxiety. Even then, I'll bet, he'll be frantically pecking away on his keyboard every time he has a new twinge or twitch, trying to find out if he can check off another symptom on the ALS list.

He built the fear that entraps himself with his own efforts, and he refuses to listen to those who would show him the way out. Sometimes, the best thing we can do is to back away and let him go along his way.

 

[pumpdoc]

I appreciate the kind words Natural. I'm not sure what exactly is going in regards to my symptoms, but I'm really scared.

I don't know what your problem is, but I do know it isn't ALS. So go to sleep. Man I wish people like you could trade bodys for a day with me, then you would realise what ALS is.

 

[Alyoop]

I would like to think that you are wrong trfogey, but I err to your experience on this forum. As I have said before, I will never understand the hysteria, surrounding a bunch of neurological symptoms......why it always seems to point to ALS ( in peoples minds) when there are hundreds and hundreds of more likely suspects. But hysteria there is, and patience we must have. I am learning each day, seeing a pattern in all this. As people get more and more inward looking and obsessed with every little pain and twitch, they all just get worse......that's the anxiety. I will never understand but I WILL keep trying.
Aly

 

[michael0314]

Just another point of view. I battled with diffrent doctors Ent, Pulmanologist, Gi dr ect over about 6-9 mo. My voice was the first thing to show problems. Then I got a thump in my foot when I walked (could not control my foot on the downward potion.) When I finally went into a nuerologist she asked why I had come to see her. I too had by then gone on the internet ( just before the app.) and believed I had ALS when I told her why she rolled her eyes at me and said she had the degree. My point is your symptoms are not specific to the deases. Through the exam and then because of the exam- a short notice ENG? (they stick needles in your nerve and muscle coonnections and listen as you flex) test instead of eeg I found I did have ALS presentation,. what they call it when its not confirmed. One thing I've learned since being -diagnosed for lack of a better term- is take absolutely every day as a god given gift. Quit worring yourself untill it's time to worry and even then appreciate the things you are given every day. I have weakness in my right side and didn't even know it. I had symptoms that I didn't even relize were symptoms untill DR. google talked to me. If you believe the worst your mind will make it so. Wait till your appointment write down questions to ask before hand so you are prepared. Don't offer your diagnosis to the DR they have the med deg. lol MY nuero said she was 95% sure but I still don't stress and worry myself sick over it! I hope this makes sense to you. Take care and pray for a good diagnosis.

 

[sadiemae]

Once I suspected ALS, we went to the Dr, and after about 20 minutes, I told her I thought my husband had ALS. She said I was right, and then we did all the tests to rule everything else out. Looking back now, he had symptoms dating back 3 yrs prior to his DX.

 

[brentonjb]

Update on my situation:

Had an appointment with my first neurologist this morning. After going over a list of my symptoms, he preformed a fairly standard (or at least it felt as such) set of tests/procedures. Mainly watching me walk, checking my strength and reflexes. And asking me to spell and say different words. After it was over, he told me that everything looked normal. That I didn't appear to have any disease of any kind. He then asked me if I wanted medication to help control the tremors, to which I told him no.

I asked him additional questions concerning my perceived weakness / fatigue, and my speech. He said that it likely wasn't anything serious, but I would need to come back after some bloodwork, so he could make a further evaluation. We also spoke about my MRI, and how atrophy and white matter changes in the brain aren't anything serious and I shouldn't be concerned.

Finally towards the very end of the appointment, I pressed him on the fasiculations I've been having. He watched for a good 30 seconds and didn't see anything. Then, he and I finally caught one (maybe two) in my left calf. About the same area where I've been complaining of having weakness / fatigue. At that point he seemed somewhat concerned, but said that much like my tremors, they too can be benign.

So in conclusion, he wants to do a full bloodwork check, and then come back to see him and go from there. I asked about the possibility of an EMG, but he didn't think it was necessary at this point. Saying he didn't want me to have to take a test I didn't have too. He did say that at any point if I don't feel comfortable, or if he's uncomfortable, he'll send me straight to a University Hospital to have "serious testing done".

So that's where I am at now. In one way I'm thankful that it doesn't "appear" to be anything serious, but at the same time still a little anxious, especially given that he noticed my fasiculation and his demeanor kinda changed afterward.

I did have a question perhaps, for anyone still reading or following my case. My fasiculations are kinda wide-spread, generally speaking my left side (foot,leg,arm), but for the-most-part I've had them just about everywhere. In addition to being sporadic, I catch myself feeling probably 40-50% of them. Regarding everything I've read about BFS, that's a good thing right? I mean, red flags for MND would be twitching and weakness? Because to date I don't appear to have any true clinical weakness, just fatigue and perceived achs /numbess & tingling that accompany the twitches. Thank you in advance to anyone taking the time to read this.

 

[Alyoop]

Great news. And yes you would have weakness that would be effecting something. I am surprised he was concerned about a twitch. Twitching in an effected muscle would look like constant rippling not just one twitch!

Now you should try and get on with things.