Need information to pass on to others.

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Need information to pass on to others.

Postby Walnut » Wed Jul 08, 2009 9:27 am

Hello, I am a member of a Anxiety Forum. I am looking for information to help people who suffer from anxiety disorders who are convinced that they have M.S.
It seems severe, continuous anxiety causes many physical symptoms in anxiety sufferers.
I myself have had many strange symptoms such as vision changes, constant muscle twitching, severe physical pain, burning sensations, tingling, urinary problems, dizziness, strange feelings in my legs and the list could go on in my case.
I see so many of the anxiety sufferers spend to much time on search engines reading sites that tell them they may have MS or even ALS.

I recommend they see a neurologist to get a definite disagnosis. If the neuro reassures them they are suffering from the affects of too much stress then I try to help them cope with anxiety.

I see so many go through weird physical symptoms similar to my own.

Is there any insight that I could learn from you.
Reading the many posts in this forum has been very helpful.
It seems even once they get a neuro workup and an MRI. They continue to worry. "The doctor must have missed it!" Things like this is what I deal with daily.
Even I must admit, sometimes I feel the doctors have missed something with the chronic pain that I have been through and the constant fasiculations. I had a clear MRI. The 1st doctor I seen would not even consider MS because I can take heat. After several visits to many doctors and neurologists, I had to convince myself that they must be right. Even though I know the M.S. diagnosis can be a very long drawn out course through many visits and tests.

Sometimes it seems my advice is in vain.
As I have read some posts here from some very courageous people, it seems MS sufferers are still able to lead normal lives and live healthy lives. For some reason anxiety sufferers look at MS as a death sentence which I cannot see from the posts I have read here.

I am hoping to learn things and get some good advice for those who "fear" they have MS.
As I write this I do hope noone gets offended by my intrusion on your forum. I do not mean to disrespect anyone. Just help others with anxiety and constant worries. Thanks for your time.
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Postby patientx » Wed Jul 08, 2009 10:54 am

I will take a stab at this. I can see both sides of this, and it is a pretty tough situation. On the one hand, you don't want to go chasing diagnoses; on the other you don't want to ignore a possible serious illness.

My advice would be, if you're experiencing neurological symptoms - see a neurologist. If you need a PCP's referral, get one. Then have a full workup, including MRI's, exam, blood tests, etc. If you're not happy with the first neuro, get a second opinion. But at some point (for me it would be after the 2nd opinion), you need to use your own judgment, and stop. If all the tests say you don't have MS, then I would go with that. True, sometimes the standard strength MRIs don't pick up all damage. And the lumbar puncture isn't always conclusive. But there's only so much testing you can do. And it doesn't do any good trying to self-diagnose based on knowledge gleaned from the internet. True, the symptoms can be difficult to deal with from day to day, especially when the cause is unknown. And some doctors are better than others, and some are more dismissive than others. But it isn't good to think you have a terrible disease like MS, when there is no evidence for it.

One example that I can think is similar (and I hate to really use this) is Lyme disease. You're probably aware there are many forums and internet sites devoted to lyme disease (and if you're not, don't go looking for them, and definitely don't mention them on the anxiety forum). The arguments usually are along the lines that almost all symptoms a person can have are symptoms of lyme disease, and it mimics many other diseases, like MS and ALS. And the blood test are unreliable, so even if you test negative, you could still have it. So, many people believe they have it. And I got caught up in this. When i was being worked-up for MS, my GP told me I have Lyme disease. I started the long-term antibiotics he recommended (though not convinced), and soon developed another infection related to the antibiotics. I promptly stopped and never went back. In the months that followed, I often wondered if it could really be Lyme, but now I'm more convinced I did the right thing.

So, my advice would be to get the testing done. If it doesn't look like MS after a full work-up, move on with life. Easier said than done, I know. But let me say this. I got diagnosed with MS about a year ago. And physically, I haven't changed that much yet. But after getting the MS label, something changed for me. If I hadn't been given the diagnosis, I think I would have continued with life the way I was, just dealing with symptoms when I had to. I'm not saying I would have been better off not knowing, but now I see things in a different light, and not necessarily a good one.
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Postby Terry » Wed Jul 08, 2009 5:00 pm

I'm not saying I would have been better off not knowing, but now I see things in a different light, and not necessarily a good one.

Ditto on that one.
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Postby Walnut » Thu Jul 09, 2009 5:31 pm

Thank you so much for your reply. It was very helpful.
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