I need advice?

[Flor]

Hello, I am new to this forum. For everyone who has this disease My heart is with you all. I am concerned about something. Well I am an artist. I work with oil paintings (it has fumes) . I used to paint and enjoy it before I got sick. On July I got mono with Epstein Barr. The weird thing is that my symptoms were muscle weakness and twitching . Since I am 26 doctors say oh you don't have Als so we are not even going to test you. I am worried because this symptoms don't got with mono. And since I have been always working with fumes and stuffs I am worried. I don't know if I have it or not. But all this fear has made me have extreme fear to paint. I don't want to paint anymore because I am scared that the paint and fumes will caused damage in the future. I haven't painted in more than 6 months. I am still sick with weakness and twitching and muscle aches. I feel my leg pretty heavy. how many of you were exposed to chemicals before Als? How many of you got mono? I will apreciate your adviced.

 

[vickim]

Hello
I don't know about paint fumes, but I worked and ran a military laundry for 20 years in wich we processed 7 million pounds of laundry a year to include drycleaning. I was diagnosed with mitochondrial myopathy this year. It has been a 5 year journey. My neuro did'nt believe it is genetic because no family history. I too painted early in my 20s but when I started having children I didn't have time. During all the testing I had they found I had epstein barr. My symptoms are simular to yours. Musle cramps, weakness, twitching, sensations of crawling and stinging or burning. I have neuropathy in my feet which causes me to use a cane. I have extreme fatigue. All I can tell you is that my neuro said it could have been caused by environment. There isn't alot of info on mito out there so I don't know. My advice is to see a doctor who will listen. My pcm did listen and referred me to a neuro, but it took 3 neuros to find the problem. Don't give up get different opinions and find a doctor who will listen and not assume because of age you don't have this or that. Never say never.

 

[Grateful]

Flor

I think that the fact that your doctors do not believe that you have ALS/MND doesn't mean that they are saying that there is nothing wrong with you; what they are saying is that your symptoms don't look like ALS/MND to them. You might like to look at the very helpful post about the difference between perceived weakness and true clinical weakness, and bear in mind that your doctors test you for true clinical weakness.

I'm not sure why you ever thought that you had ALS/MND in the first place; is there any particular reason for this? It can take a long time to recover from a viral problem, certainly longer than a few months, so you can't rule it out on the assumption that you would be fully recovered by now...

 

[notme]

There is no indication that artists get ALS more than anyone else. Mono can cause issues for many months, and its a virus, so it wasn't caused by painting, either.

The most common cause of twitches is BFS. Did the doctors find any weakness when they saw you? If they had, regardless,of age, they'd have ordered an EMG if for no other reason than worrying about being sued.

Muscle fatigue can have a multitude of causes, most are benign.

 

[bigguy]

If this developed in conjunction with epstein-barr and mono, chances are strong it could be a passing postviral syndrome.

 

[MommyRissa]

Flor,

I think that it's important to understand the difference between ALS twitching and benign twitching because there is one. Firstly, and anyone please feel free to correct me if I'm wrong, I believe that the majority of twitching in ALS goes unnoticed in the beginning. Also, as the wonderful stickies point out, twitching in ALS is secondary. That means that it is the disease already in progress, as the muscles are losing their nerve connections and dying. You would have noticed one of two major things already, weakness and/or atrophy. Clinical weakness means the inability to do something that one was once able to do. For example, you would not be able to turn a door knob, hold your coffee cup, or open a bottle/jar of any kind. That also goes with things like falling and dragging a foot. Atrophy would be very obvious muscle loss.

Muscle fatigue is not muscle weakness. If you can still pick up that paintbrush and paint then you do not have clinical weakness. Your leg will not FEEL heavy, you will not be able to move it like you once used to. Your hands will not FEEL shaky, they will shake no matter what. Your arms will not FEEL tired, you will not be able to lift them up high enough to brush your hair. ALS is not a "feeling" disease. Once it starts it doesn't stop. It doesn't stop you from picking up a gallon of milk one day and then allow you to pick it up the next. Once something stops working, that's it.

Twitching itself is not uncommon. It's actually very normal and lots of different people twitch for different reasons. Most twitching is benign and nothing to be afraid of. You should look into BFS.

You have had some pretty heavy health issues recently and it's normal that your body is still trying to recover! Stress and anxiety can prolong that whole process. If you went to see your GP and they weren't worried about ALS then I think it's safe to say that you too should not be worried. If you do not have clinical weakness there won't be a lot of cause to send you to a Neuro for an EMG/NVC unless you are displaying characteristic symptoms of another Neurological disease or ailment. I'm not saying that you shouldn't continue to pursue the answers to what's bothering you, not at all! I'm saying that in the incredibly long list of medical illnesses, ALS should be at the very bottom, every time, and furthest from your mind. It is an incredibly rare disease.

Regardless, never let anything rob you of your passion. Don't stop painting! If you are afraid of a certain kind of paint then maybe you can look into a different brand that is non-toxic or organic! Maybe you could even begin making and mixing your own paint. But don't give that up. That's something that is therapeutic for you and good for the soul!

 

[Luke]

BigGuy made a good point. I mentioned a similar thing on your other thread. Get back to the doc.

 

[Lolita]

Hello,
I am new here. I had mono 7yrs. ago, and was more sick than the average person that gets it. I had fatigue and abnormal sensations for about a year. The dr. finally did a blood test again, and said that I had the antibodies still fighting it present. Even to this day they are present. Finally I thought I was better, except that I had fatigue some days, started losing my hair, and then bam I had some slight vision blur, tingling, and severe fatigue. They kept doing MRI's, but they all came back normal. 7 yrs. later I started feeling breathless and muscles started twitching everywhere. My neuro thinks that I have ALS and is sending me to a specialist at the Univ. of Alabama. I had an abnormal EMG study, and slightly elevated protein level in my spinal fluid. Although you cannot see it...I feel like I have an internal tremor going on in my body, and also my leg or my trunk out of nowhere will do a sudden jerk. Just 1 time, and dont know when its coming...Flor if you havent already...see a neurologist for further testing. The 1st couple I saw just did an MRI looking for MS. I feel they should have done more.

 

[Ms. Pie]

Great post Mommy! I agree with everything you said.

 

[MommyRissa]

Thank you Ms. Pie!

 

[Flor]

Yes, I have seen a neurologist and my insurance doesnt want to cover for more test. I am scared because I know the tingling, tremors, and heaviness and not mono symptoms. And I scared that in the future I might develop ALS. I know something is not right with me. By the moment I am seeing a homeopath doctor and he is doing a detox, gave me suplements, vitamin e and protandim supplements, herbs etc. I am scared because of my symptoms. I am scared that mono can cause damage in the future and the ct scans I had. My homeopath explained me that pesticides are neurotoxins, I live near the Everglades . And that some foods are neurotoxins too. He changed my diet to healthy and home cooked foods. I am scared and sad. A few weeks ago I wasn't able to walk. Now it's getting a bit better but I am very scared. I think I will save $ to go to a neurologist and do further testing.

 

[Luke]

ALS doesn't get better. If you couldn't walk and now you can, that should provide you great reassurance.

 

[Flor]

Lolita please tell me when you had a diagnosis. Why your doctor think you have als? I have all your symptoms .

 

[rose]

Hello,
I am new here. I had mono 7yrs. ago, and was more sick than the average person that gets it. I had fatigue and abnormal sensations for about a year. The dr. finally did a blood test again, and said that I had the antibodies still fighting it present. Even to this day they are present. Finally I thought I was better, except that I had fatigue some days, started losing my hair, and then bam I had some slight vision blur, tingling, and severe fatigue. They kept doing MRI's, but they all came back normal. 7 yrs. later I started feeling breathless and muscles started twitching everywhere. My neuro thinks that I have ALS and is sending me to a specialist at the Univ. of Alabama. I had an abnormal EMG study, and slightly elevated protein level in my spinal fluid. Although you cannot see it...I feel like I have an internal tremor going on in my body, and also my leg or my trunk out of nowhere will do a sudden jerk. Just 1 time, and dont know when its coming...Flor if you havent already...see a neurologist for further testing. The 1st couple I saw just did an MRI looking for MS. I feel they should have done more.

Lolita,

Elevated protein

 

[rose]

Hello,
I am new here. I had mono 7yrs. ago, and was more sick than the average person that gets it. I had fatigue and abnormal sensations for about a year. The dr. finally did a blood test again, and said that I had the antibodies still fighting it present. Even to this day they are present. Finally I thought I was better, except that I had fatigue some days, started losing my hair, and then bam I had some slight vision blur, tingling, and severe fatigue. They kept doing MRI's, but they all came back normal. 7 yrs. later I started feeling breathless and muscles started twitching everywhere. My neuro thinks that I have ALS and is sending me to a specialist at the Univ. of Alabama. I had an abnormal EMG study, and slightly elevated protein level in my spinal fluid. Although you cannot see it...I feel like I have an internal tremor going on in my body, and also my leg or my trunk out of nowhere will do a sudden jerk. Just 1 time, and dont know when its coming...Flor if you havent already...see a neurologist for further testing. The 1st couple I saw just did an MRI looking for MS. I feel they should have done more.

Lolita,

I know its scary not knowing what's wrong.