Status
Not open for further replies.

LoFaroNYG27

Member
Joined
Apr 30, 2011
Messages
17
Reason
Learn about ALS
Country
US
State
New York
City
Oswego
Hello, I am new here. I read all of the information posts at the top of this board. I know that nobody here is a doctor or has the ability to diagnose anybody with ALS. I don't mean to anger anybody by asking my following questions, I am just concerned. For the last year I have dealt with so much stress regarding symptoms that I have experienced that I just want to get on with my Life. I respect everybody here and I respect all of your opinions. I have both respect for and sorrow for anybody who has ever been diagnosed with this horrible disease. I respect the strength that you all have, I respect the fact that you just keep pushing forward and I respect that you come onto these boards to give support to others who are dealing with this disease and/or concern about having this disease.

Beginning last may I started getting some weird symptoms. Mild headache off and on, muscle twitching on various parts of my body off and on, burning eyes (mostly left) and blurred vision in both eyes off and on, ringing in my left ear off and on, aching pain and tingling in my arms and legs off and on, hair loss on my lower legs, Sharp pains on the top of my head off and on, this feeling as if somebody is touching the top of my head when in fact nobody is, lightheadedness or brain fog that comes and goes and a feeling of pressure around my nose and eyes. Also I feel achy in different parts of my body sometimes, like my legs, back and arms. I got a CT scan without contrast and a brain MRI both with and without contrast done, which all came back clean, thank God. My only known medical issues are vitamin D deficiency, sleep apnea, Scoliosis and early stages of fatty liver.

My diet is pretty good right now, I had the early stages of fatty liver, Sleep Apnea and a very bad vitamin D deficiency, so I was put on a strict diet. I no longer eat red meat, also I try to stay away from too much carbs and sweets, as well as fried foods. The symptom that really worries me the most out of all the symptoms that I have been experiencing is the muscle twitching all over my body. I do stress a lot, I pretty much worry about everything to be quite honest. I stress about money, I stress about my medical issues, I stress about where I live, I stress about relatives. Pretty much everything. But the twitching usually lasts for days and even comes on when I am not stressing. I have been trying to lose weight and get healthier, in hopes that it may rid me of these issues. But so far I have went from weighing 350 lbs to 289 lbs and haven't seen any change. It has been a really long year with all these symptoms and I hope I can find out what this is and get rid of it soon so I can move on. I have gotten blood work done along with the MRI's of the brain and the CT scan. I am not looking for a diagnosis, I know that nobody here can give me that. What I am asking for is input. Do symptoms of ALS come and go like my symptoms do? Do my symptoms sound like typical ALS symptoms? Any assistance you may be able to give me will be much appreciated.
 
Hi there. MND/ALS symptoms don't come and go. Your many sensory issues point away from ALS. BFS sounds more likely for the twitches. You need to get the stress out of your life eiither by meds or therapy.

AL.
 
Nope and nope. Have you seen a doctor and discussed these symptoms with a doctor?
 
Not sure what symptoms you have that you think might be related to ALS. The twitching that goes with ALS is followed up very quickly by serious weakness (as in, partial or full paralysis) in the muscles that have been twitching. No paralysis -- no ALS.

And real ALS symptoms don't come and go, so I'd have to say that, to me, it doesn't sound like you have ALS.

Keep working on the sleep apnea and the weight problems. Also, consider getting some help with the stress, or at least, your ways of coping with it.
 
This might be a little technical for you, but I think it's comforting enough that it's worth saying. "Mental" problems like high anxiety, PTSD, and major depression have all been proven to coincide with high levels of pro-inflammatory cytokines. Whether those cytokines started the mental problems or the mental problems started the cytokines is thusfar unknown. Pro inflammatory cytokines cause most of the big name auto-immune disease symptoms, to give you an idea of what the effects of them can be. The important thing to understand about that, is that when you stress more, more of those inflammatory buggers are produced by your body. But when you feel better or less stressed, they aren't scrubbed magically out of your system. So stress related physical symptoms don't fade when the stress fades, even though it cognitively seems like they would. Instead, you have to wait out the life cycle of the cytokines and whatever adrenalin did your neurological system. It's like getting angry and throwing pepper in your food... calming down won't make your food any less peppery until you get a new bowl or eat through the stuff you messed up. If you run at a truly high stress level, it isn't rare for it to take 6 months for the physical symptoms to back off.
 
I appreciate all of your help. I really did not know rather the symptoms of ALS could come and go or not prior to reading all of your replies. I didn't know anything about the disease, except that somebody I know had mentioned that the muscle twitching could be ALS. Of course, the person who said that knows as little as I do about it all, but I wanted to find out from some people who knew more about it than we do. My friend had thought that the symptoms of ALS could have various symptoms coming and going. He had said "Some symptoms can come and go as the brain maneuvers to bridge gaps, get around roadblocks, make new connections if there has been mild damage." That is what he sent in the message to me and I thought from the beginning that he was probably not correct, but I had no information to tell he he was wrong. I looked up the question of rather symptoms could come and go online, but didn't have any luck. I guess to answer trfogey's question, the symptoms that I had thought were related to ALS were the muscle twitching and the tingling in my legs and slight weakness. I was not aware that directly following the twitching, the muscle has paralysis. It is so difficult to get facts straight on the disease. To answer Ms. Pie, yes I have gone to the doctor a few times for this. I was given a CT scan without contrast, a blood test and Two brain MRI's one with contrast and one without.

I really appreciate all of your input. I agree with one thing that you've all said, I know that I very much need help with my stress. It is something that I have been putting in the back seat to these symptoms. But, I am definitely going to get some help with the issues and hopefully my symptoms will subside. I have to be honest, prior to all this I knew nothing abut ALS. I didn't even know of how bad it was. But, now that I know I am doing my part. This disease needs a cure and I signed up for a walk to fight ALS that is taking place here in September. Nobody should have to be given the prognosis of ALS.
 
I forgot to mention, a while ago I also lost some hair on the sides of my ankles and started getting some brown blotches. At first it looked like dead skin, but never went away. The physicians assistance didn't know, but thought it could be from fluid in my legs. I just wanted to make sure that it couldn't be atrophy. I tried finding pictures to compare, but was unsuccessful.
 
Also, I forgot to give some information. On the bottoms of both legs where the hair is gone and the brown spots have formed, if I lay that leg on the corner of a couch for long periods of time it ends up having a dent on the side of my leg. Now I know that anybody who has their body sitting against something is going to have a mark where the object had rested, but with this it ends up being a very big dent that lasts for a few hours. I am not quite sure what atrophy is and I don't know if this could be atrophy. I apologize for keeping at this, I just didn't want to leave out information that could be important. I appreciate everybody that takes the time to reply to me and help me. You're all very good people to do it, for me and for all the other people you've helped on these boards.
 
atrophy is a loss of muscle. The 'dent' in your leg could be caused by an area that is swelling? Skin color changes and hair loss are usually circulation type of issues. Sounds like maybe you need a good internist.
 
Get it checked out Lo. I feel safe in saying you don't have ALS and most likely something from which you'll recover. Good luck!
 
My advise would be ask the doctor about Lymes Disease
 
Thank you very much Ms.Pie, it means a lot to me. I will get it check out and I hope you're right about it being something that I will get over.

Thank you too Liz, I will tell my doctor about it when I go.

I have also been getting a tightness in my throat, as well as pain and a very froggy throat. I had heard that those aren't the particular symptoms of what happen to ones throat with ALS. But, I thought I would mention it anyways because it just began happening yesterday.
 
I have been twitching nearly 4 years, all over, including tongue rarely. It all started during very stressful time and I even had some strange neuropsychiatric symptoms few weeks before - depersonalisation feelings, strange "brain fog". Then the twitching began, I can even remember my very first twitch - it was near my left elbow and I thought it was funny.
Fast forward, 4 years later I have no weakness I know about and never had a cramp (well, not painful cramp, not sure if these non painful spasms after muscle stretching are considered cramps?)...
I hope my condition is benign and wish the same for you...
 
Last edited:
Yeah, I know that a lot of people have said stress could be a factor. The worrisome part for me is that I have gotten weakness in both my legs as of late. But, I have had pain as well around my knee caps and down my legs. And sometimes the legs feel stronger than other times. So, I am hoping that factor means that ALS is still not even a possibility.
 
P.S. Thank you very much, I wish you well too!
 
Status
Not open for further replies.
Back
Top