I'm really freaking out...

[Rachel W]

Hi Guys,

I left a message a while ago but now things seem to have gotten much worse.

It all started out in August when I had an eye exam and I found that I had some distortion in my right eye. I freaked thinking it was macular degeneration, but had retina scans and everything and I was fine.

So, I go home and for the next few days I was doing research and I found that it can be caused by ocular neuritis which is a common sign of MS. I tried to think positively as I was in a car accident in 2004 and had suffered damage to my vestibular nerve on the right side which causes me to get dizzy for months at a time, so figured that maybe it happened then instead (as it is hard to detect without just looking through my right eye to read (which I never do and I had noticed bleariness at a few doctor's visits but assumed that it was because I had just been covering that eye first).

But of course, being anxious, I had noticed that I was weak in the legs (a little before actually, but I had also been spending a lot of time on the computer with legs curled up under me for days on end). But the weakness became really bad, but when I exercised it went away, or reduced greatly. Then I thought back to two incidences where I had tried to grab something and had difficulty, one was when I was in a major rush and took a few times to take a receipt from someone, and then one was when I couldn't get the corner of a paper towel. My typing had also been a little off but I am a random typer and I was really dizzy at the time and this is one of the usual symptoms especially as I felt that I had been overdoing it doing some contract computer design on the side.

When I thought of these I was convinced that I had MS, but then something worse happened, I started worrying about ALS (MND). Since then I started noticing every little thing my hands were doing, and how they looked. My hands have gotten weaker and weaker and pcking up small objects is really difficult. I have twitches everywhere, and they have concentrated in my hands and arms. My legs feel either weak or stiff when I walk and I have cramps in my calves. I am now convinced that I have ALS.

I went to my GP and he said that he did not want to examone me as he did not have any knowledge of the disease and wants me to go to a neurologist. My boyfriend booked me to see one in a really good hospital but the guy specialises in ALS which has frightened me more. I want to go to a general neurologist so he can be more open minded I guess.

I am so scared. At this point I don't know how it could be anything else. I am at the point that if they told me I have MS I would be happy!

Can anxiety do all this? Could the initial symptoms that I remembered afterwards be just coincidences as it seems strange that I worry about a disease first before showing most of the symptoms (the others were not bothering me until after I first started worrying. I would not have been worrying at all if it had not been for the sight issue and that isn't even a symptom. Would that be too much of a coincidence?

I don't even see a future for me anymore. I am terified and crying a lot.

Please help!!!!

Rachel

[randomworry]

hi rachel

i know its hard but please dont worry take over. the body is really complicated so what symptoms you may think are serious are more often than not caused by something simple. do something you enjoy in the mean time to take your mind of things

all the best

[teabag]

Oh Rachel- i was exactly where you are about 4 months ago and still have days where i think that i have ALS. Did you think this because of something you read on google?
I also get muscle twitches and perceived weakness but the doctor said it was anxiety over another issue and that worrying about my body was my way of dealing with things. Its such a horrible feeling and you feel trapped by it all. I think once you have seen a neurologist you will feel such a sense of relief and you will be able to move on with your life.
I also firmly believe that if we think hard enough about symptoms then the body will respond accordingly! Sometimes i find that if i have been thinking about twitching then it happens- weird hey!!?? Anyway good luck and remember that we are all here for you. Many hugs, Teabag. xxxxxxxx

[Rachel W]

Thanks so much. It is just that my right hand (which is my dominant hand) seems thinner on the top, so when I clench my fist the tendons stick out, whereas they don't on the left hand, and then if I bend them down at the wrist then the bones of the wrist seem a little more prominent.

A gallon of water also seems much heavier to me. Does perceived weakness make things seem heavier? Can it make it harder to move a part of the body such as a finger (e.g. when clicking a mouse?) and make picking up things feel 'weird'?

It is just freaking me out so much, and i am now getting more scared to make the appointment with the neurologist because I have convinced myself so much. :(

Thanks for all the support.

Rachel

[Rachel W]

I have another question. I now noticed that when I make a fist, I have deep rivets between my tendons on the back of my hand (on the right hand - my dominant hand), but not on my left. I actually thought that when I have been looking for atrophy I had rivets on both when clenching my fists, but now it is just in my right. However I am not sure and perhaps I didn't have rivets and now I do. Does anyone else here have deeper dents in their dominant hand when making a fist? Is there a chance that the dominant hand has more refined muscles and that is why, or is it just a confirmation of my worst fears?

I also now started to worry about swallowing as I already feel that I slur my speech. I couldn't stop swallowing, and the more i did it the less it seemed to work properly. I made my throat sore and now my voice is a little hoarse. I am driving myself crazy... :(

Please help again... sorry to be a bother...

[Rachel W]

I haven't been here for a while, but I continued to deal with weakness in arms, ankles, some speech problems and twitching. I was convinced that I had ALS.

I went to a neuro who specilises in this and other similar diseases finally on Monday and he gave me a full neuro exam which was completely normal and said not to worry, but just to be sure he wanted to give me an EMG and NCV.

I had my NCV and EMG tests today. They did my right leg and then my right arm and decided that there was no reason to continue as they were SO clean!!! Not a twitch or anything (although my left knee decided to dance a little in celebration). The tech did the nerve conduction and then the doctor himself did the EMG. I asked him about the weakness/shaky feeling that I get in my hands. I asked if I could be getting an EMG too early and he said no.

I also asked that if it was more in my mouth would the other tests clear me so he said "Well, I can stick a needle in your tongue right now if you wish". I hesitated (obviously) but then said yes. He stuck it in my tongue via under my chin, which he says is easier and less irritating (it sounds awful but hardly hurt). He had me stick my tongue out twice... crackling, and then silence when I had it relaxed... "CLEAN!".

I made sure that I mentioned my cramps in my legs and asked him again about my speaking and such, and my fingers when using the touch-pad on the computer (my middle finger gets extra weak and stiff) and when I try to double click, my finger will only click once).

I also asked him that would he definitely know if I had something wrong from just the muscles he tested rather than working on every muscle and he said yes. He also said clinical weakness is easy to detect and my neuro exam was clean so he is completely sure that I don't have anything wrong and doesn't think that any more testing is needed. He said that I could come back in 6 months to get the tests again and I asked him "Should I be worried about the fact that you want me to?" He replied that we did not need to do it, he only does it as it seems to make patients happy. I will hopefully be in the UK for nine months by that time to visit my family. He said that if I had any more concerns in the future I could come and see him. He said that it makes his day to be able to give someone the all clear, as he has days when he has to give people the worst news (he has diagnosed people with ALS and knows the disease and other MNDs etc. well as that is what he specialises in).

I asked him what I should do when my hands feel weak (and he said just to walk around and rest them). The problem is, my fingers always feel weak when I type. But I should be relieved that according to him if I had something bad then he would know it. It is hard not to worry as I am weak as I am typing this but I know that I should just relax and hopefully the symptoms will lessen with time.

So, for all those who have twitching, and even have additional symptoms, don't worry too much. There is a difference between feeling weak and the clinical weakness that a neuro would detect!!! If you need to send me a private message over worries you can also do that and I will be glad to chat with you.

Thanks for everyone's support here!!!

Anxiety can cause pretty much every symptom under the sun except a CLEAN EMG and CLINICAL WEAKNESS!!!!

Take Care!!!