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Old 12-05-2011, 07:38 PM   #1
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temporary recurrring paralysis unexplained???

Hi guys, i'm new to the site and would like to thank everybody or anybody in advance for taking the time to read and or respond to my message here. I appreciate that there are 10,000 or more members and a lot of activity happens here (posts etc) so once again much appreciated for caring about my plea in particular, i hope i can be of help to others on the site too

I'll try to be as brief as possible with my condition. The most distinctive and recurring symptom that i have experienced is a right sided temporary paralysis that is brought on when i move my right leg. it comes on when:

1. When I stop at traffic lights and wait for the lights to change and then begin walking again (this happen 80% of the time)

2. When i get up after sitting down for a while (50% of the time)

3. when i stretch my right leg whilst sitting down (30%)

I won't bore you by listing every other occasion that triggers my paralysis, but the pattern seems to be whenever i engage my right leg in movement.

The Paralysis Description/frequency

basically imagine someone having a stroke and reduce it by 30 or 40%. my right leg becomes difficult to move as does might right arm and my face/mouth on right side droops slightly. This lasts about 15 seconds and happens about 5 times on average each day. It's gotten more frequent over the last 18 months but i initially experienced it approximately 3 years ago when i was doing leg extensions in the gym (a place i have long since stop going

Other symptoms

possible ibs (stomach pain/discomfort)
Face got unusually bloated about 3 years ago and never decreased no matter how skinny i got or amount of water i drank)
hair loss/thinning (unusal both mum and dads side have hardly any mpb)
Varicose vein in right calf (possible link ?)
mild tinnitus (right ear mainly)
twitches in most parts of my body (comes and goes)
problems with eczema and dry lips that come and go
fatigue

There are probably more i could mention, but i'd love to hear any responses or opinions especially on paralysis symptom. Thanks again for reading and btw i've had an mri scan and seen two neurologists who've found nothing wrong but i do have a positive ana level.

 
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Old 12-06-2011, 10:07 AM   #2
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Re: temporary recurrring paralysis unexplained???

If I were you, I'd go see a rheumatologist......arthritis specialist. You don't have arthritis but they are also the ones who deal with auto-immune disorders and a positive ANA can mean one of them. Lupus comes to mind. It has the positive ANA and has a neurological component that can do the things you describe. It is often called "the great pretender" as if can look like almost any disorder out there.

The ANA is the specialty of the rheumatologist and that is where I would start.

Jen

 
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Old 12-06-2011, 02:40 PM   #3
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Re: temporary recurrring paralysis unexplained???

really appreciate speedy response jen that was incredibly quick reply thanks.

I saw a rheumatologist a couple of months ago who seems to think that my ana levels aren't that relevant because i don't have enough symptoms to qualify for an auto immune disease.

Do you think she's wrong? i wasn't entirely convinced that i'd had a really thorough examination tbh. Apparently only 5% of people have a positive ana level without there being an underlying auto immune disease so that seems like too much of a coincidence considering.

I was also told that the blood test i'd had for ana was also for lupus and that part of the test was negative. Any idea as to what's going on here? and even if that part of the blood test was negative, is that test conclusive enough to rule it out indefinitely?

Thanks again Raf

 
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Old 12-06-2011, 02:54 PM   #4
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Re: temporary recurrring paralysis unexplained???

There are a lot of auto-immune disorders and some have a positive ANA and others don't and sometimes the ANA can come and go and go up and then come down. That is why they are so hard to diagnose. Lupus is only one of them.

You need to take into account where you have traveled (foreign diseases and parasites), the jobs you have done(exposure to toxins), your genetics....so many factors that you need a doc who does this kind of investigative treatment. Maybe you'd be better starting with an infectious disease doc who could then refer you to an investigative rheumatologist. Obviously something is wrong and they just have to take the time to figure out what. And then you have the inevitable problem that not all diseases can be tested for.

The way many of these docs work is to slowly exclude what may be wrong so even if this other doc didn't help find anything, maybe her results did rule out something.....but what. If all else fails, I imagine your NHS has someone who does this kind of work but probably in London. You may have to contact someone at NHS and find out who is their best investigator of rare disorders. Here in the US, we have such a program through the National Institutes of Health called the Undiagnosed Diseases Program. Place of last resort for some. You should have something like this with your system.

Good luck trying to figure this one out.

Jen

 
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Old 12-06-2011, 03:42 PM   #5
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Re: temporary recurrring paralysis unexplained???

Thanks again i'll look into the undiagnosed program suggestion . My doctors/gp's at my practise seem to have given up on trying to find out the problem to be honest (which is extremely frustrating).

As i mentioned before i've seen two neurologists a rheumtalogist and had a couple of mri scans as well as a fasting blood test and an auto immune blood test and they've basically thrown their hands up and said there is no one left to refer me to so just live with it basically.

I'm in two minds as to whether to change practises again i don't have a massive amount to lose, however i've already left one practise (who were useless) to join the one i'm at the moment who are marginally better. The thing that stops me going to another practise is the lack of an angle insofar as i don't know what other tests to request maybe an examination on my right leg/calf? or another referral to see a seperate rheumatologist?

Thanks again you've been really helpful

 
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