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[olly]

Hi carendam,welcome to the forum.
I did know of a lady in newyork with pls who had seizure type episodes like you describe.
I think her name was kelly,i met her on a yahoo site called pls friends i joined before here.
Beky here is a member and she will know her,i will ask her.........maybe if you talked to this lady she could help.
Also to consider is mitochondrial desease which can mimic mnd and cause seizures.
I have had odd seizures since a baby but not regular (1 every 5-10yrs)so its not classed as epilepsy.
I did have an eeg when i first got ill and provoked potential test but they were ok,they put electrodes or something on your head and look at the wave lengths.

How long have you had symptoms?
since 2007 or before? just trying to understand your progression rate.

 

[carendam]

Your all awesome! Thank you so much. I know I can't let people bother me. It's hard my brother tells me all the time who cares what they think or why they are staring. Your absolutely right! You have a great attitude! I'm going to try to get out of the house more. It's hard when my hubby has to pick me up. I have my wheelchair and my power chair but I can't get out of them without some help at times and it's hard to get me in the van. I feel bad for my help hubby but he does love me and helps me all the time when I need it. I am very lucky.

I love your attitude! All of you are very inspiring people. Thank you so much

 

[carendam]

Hi Olly,
Thank you so much. that would be great to talk to someone with similiar symptoms. My symptoms started with my legs. My seizure like episodes have been going on for 2yrs. but they are getting more and more violent. I'm alert and all but I can not speak at all. I have been through every test possible and my neuro said there are no more tests or blood work. I never had a muscle biospsy done and i think the drs did speak of that. I have seen 7 neuros and nobody has any answers for me. All I know is that I am getting worse. I can't talk for long periods of time anymore. my neuro said after my last gene test for HSP if that came back negative then there is this one more disease more devastating. It only makes sense PLS. I don't know Thank you so very much!

 

[AKmom]

Back in the 90's, way before the docs had anything figured out, they tried to treat me for fibromyalgia by giving me srri antidepressants. I started having documented seizures. They could find them on a eeg too. Well after being on anti seizure med for a couple years, and me almost dying from being over medicated and still having seizures, I got mad enough at the docs to say enough and took charge of my own care (no I do not recommend for anyone). Long story short, we found out it was the srri antidepressants that were causing my seizures. I no longer have seizures now for the past 12+ years. Not on anti seizure meds either. Would be worth asking the doc if they did a eeg and what the result is. Actual real seizures are not part of pls, rather are usually triggered by something else's. Being Spastic and frozen from pls is different from seizure.

With seizure you can be tight and sometimes aware, but at least for me, it felt like electricity running through my body. With Spastic spasms, its like stretching your whole body and it gets locked, or stuck in the peak of the stretch and you cannot move till it releases.

 

[AKmom]

My post went to moderation.

 

[johnnyliverpool1]

autonomic dysreflexia....siezure like events.....i had a spell when i kept getting them...best you read up on wikipedia and ask neuro.......pretty serious but somewhat avoidable if you look after yourself....good luck, johnny

 

[carendam]

Hi Akmom,
Thanks. I will ask my neuro about that test. I see my neuro on Jan 2nd and thats when I will get my answer about PLS.

 

[carendam]

Hi Johnny,
Thank you. I did look it up and I don't fit the criteria for that. So I don't. I will ask my neuro about that one also. Thank you so much

 

[vickim]

Have you had a muscle biopspy?

 

[carendam]

Hi vickim,
No I have not had that done. The drs did mention that a yr ago, but it never happened.

 

[vickim]

Well that was the test that gave me my diagnosis. Maybe you should look into it.

 

[carendam]

Thanks Vicki I am going to ask my neuro. Does it hurt?

 

[vickim]

They took me to a operating room and numbed my leg with a local then cut about a 3 inch incision and removed a piece of muscle. I got a little panicked being the woose that I am and my blood pressure bottomed out, plus I had'nt eaten in over 12 hours so low blood sugar. Over all it wasnn't bad I only felt the injections of the numbing. I only had to take 2 of the pain pills they gave me and then just motrin.
Other people I talked to here had general anesthesia, so I guess it is up to the doctor. My scar is on my thigh, about 2 inches long and there is a dip where the muscle is missing. Don't let it scare you. Do what you have to do to get a diagnosis.

 

[AKmom]

I had one too. But mine was under light anesthesia. Only needed one pain pill, other than that it really didn't hurt much. No more than a scrapped knee type pain for a few days. Mine is in the side of my right thigh. Same size as vicki mentioned.

 

[carendam]

Oh Gosh. I'm a chicken when it comes to surgery. You both are amazing. Does this muscle biopsy tell if you have PLS? I know my muscles are just getting worse and worse. Thank you