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Old 10-03-2004, 01:27 PM   #1
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Question What's the chance that my problems could be Primary Lateral Sclerosis?

I'm new to this board and just wanted to ask for your opinion.

Symptoms started in 95 after birth of second baby.

I'm now 33 years old.

My symptoms are:

95- right hand tight and painful when in use. Would calm down after relaxing muscles.
- cant remember how soon after that the left hand would do this too.
- Then noticed leg stiffness and burning pain when trying to do stairmaster.
96- Felt like I only swallowed on left side ( still feels like that)
- right side face felt tight
- dx' w/fibromyalgia
- pins/neeles sensations down leg
- severe fatigue setting in
98- had mri, evoked potentials, LP, - all normal
- hand shakiness, like a nervous shake
99- developed endometriosis, TMJ, and GERD
01- Develped throat spasms ( throat will totally close off air supply)
If I swallow saliva wrong and it tickles the back of my throat, my throat will just close off. I can breath again once the muscles relax.
- Whole face, both eyes, neck, and throat are tight now
- Right hand,fingers,wrist-bad tremor AFTER using hand or arm (plunging toilet, pulling weeds, washing dog, etc.)
02- neck, back of tongue, throat tightness when reading out loud ( hard to form the words when this happens)
- Still having throat spasms
03- Getting cramps and stiffness now when having relations with husband(cramps in thighs,side of foot, toes, back)
- Still having throat spasms
04- Bladder urgency,frequency,leaking(need to wear pad)
- Right thumb tremor 24/7 (positional)
-Right leg tremor if I have to push down brake peddal too long (at bank line, red light)
- Right eye has floaters now
- Blurry vision at times ( like something's on my eyelash)
- started getting muscle twichtes this year ( under eye, right upper arm, left knee-and thigh, left foot in the arch, lip)

Other info:

- Hard to slow dance because of stiffness and pain (started yrs ago)
- All body muslces feet tight-stiff-burning pain when using them.
- All joints hurt now also
- Finger and hand stiffness when writing
- 2004: Voice goes out every now and then (not too often though)
- Can't sit in an uncomfortable chair for long because of stiffness and pain.

Through the years many things have been ruled out: MS,MG,Lupus,etc.

This years emg/nct was normal. Dr. did note on his report that I have hyperreflexia and bilateral ankle clonus.

I'm worried about a couple things: Parkinsons, McArdles Disease, and Primary lateral sclerosis.

A few dr's (not mds's) say no to pd because i'm too young and don't look like someone with pd.

McArdles has not been checked. And PLS has never been mentioned.

Emg dr this year said I do not have fibromyalgia, Chronic myofacial pain,and that my tremor is not from essential tremor.

I would appreciate any comments. Thank you!!

PS: Years ago I also developed heaviness-stiffness in legs when trying to climb up pool ladder to get out. This year have weakness(?) in legs (when I walked around too long , right leg wouldn't support body to bring left leg up a step and fell onto left shin and knee)
This year also noticed that it's harder to turn in bed. Also noticed my that my fingers like to be closed next to palm, and when I stretch fingers they are very stiff feeling.
I'm most concerned about the throat spasms that i'm still having.
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Last edited by luv2read; 10-06-2004 at 03:10 AM.

 
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Old 10-04-2004, 01:39 PM   #2
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Re: What's the chance that my problems could be PLS?

hi luv2read
welcome aboard
i didn't see any mention of being checked for lyme in your history. all of your conditions are also lyme symptoms. it would be my next move to be seen by a lyme expert if i were you. most drs are not educated on lyme and health departments from coast to coast are not awair of the presents of lyme in their state. in fact more often than not they play down the risk to protect the tourest dollars rather than the general public. i can say this with 100% confidence cause i am living with lyme in ohio and my neourolgest told me we didn't have it in ohio. it is important to see an expert because it is difficult for other drs to get the info right. tell where you are from and someone will give you a dr to call. check the lyme threads and see for yourself! even th als association is in denial. i have spoken to them in person and they still do not mention lyme anywhere on their home page. hard to get donations for a disease that does not exist.
jon

 
Old 10-04-2004, 02:54 PM   #3
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Re: What's the chance that my problems could be PLS?

Thanks for the info.

I'm also from Ohio. I don't know if they've ever checked me for lyme or not. I've had many blood tests through out the years. Last blood testing done this year. Like over $1,000.00 worth!!

I have an appt at Cleveland Clinic in Nov. If this neuro doesn't think it's pd I'll for sure ask him to be tested for lyme.

Can lyme disease cause throat spasms 6 yrs into symptoms? If I get the tiniest bit of an itch in the back of my throat I will cough to get to the itch and then my throat will totaly close off. Once the throat muscles relax I can breath again ( usually within 20 seconds).

Does lyme disease cause tremors in the wrist and fingers AFTER using arm-hand muscles?

I don't know too much about lyme but have heard a few stories of people being dx'd with something and it turns out that it was lyme disease.

When my youngest was like 2 yrs old , he was playing outside. The next day I found a tick imbedded in his groin area. It must of went down his
diaper. We called the nurse and she told us how to get it off. We asked if we should save it in case he get sick. She told us to just throw it away.

So, yes there are ticks in Ohio!!! I don't know where in Ohio you live, but we live in Akron.

Can Lyme cause one to be hyperreflexic and have bilateral ankle clonus. This year was the first yr any dr has noted this and I've been having problems for 9 yrs.

Forgot to ask ya, Were you originally dx'd w/als? If so, you must of had an abnormal emg? Was the emg abnormal because of lyme disease? My emg was normal this year.
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Last edited by luv2read; 10-04-2004 at 03:17 PM.

 
Old 10-05-2004, 08:43 AM   #4
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Re: What's the chance that my problems could be PLS?

hi luv2read
i live north of dayton about 20 miles. i was dx with als in troy and then confirmed at the osu hospital by abnormal emg. i had asked both drs to test for lyme and both chose not to test saying "we do not have a presence of lyme in ohio". i did not leave the state to get this. first exposer was fishing lake erie then deer hunting se ohio in 2000. i have spoke with others who went to the cleveland clinic and they missed it. if i were you i would skip the cc and go to hermitage pa to one of the lyme experts there. dr joeseph or dr swammi. lyme is the #1 infectous disease we are facing today. cdc recognises 26,000 new cases in the usa in 2003. it has been estimated by the lyme association that it could be 10 to 20 times higher than that due to inaccurate testing. it has been documented that people have been infected for many years before it was properly dx. children have been born with this disease from conseption. it is sexually trasmited to partners and can be spread thru blood transfusions as well.
let me know if you need more proof.
jon

 
Old 10-05-2004, 09:42 AM   #5
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Re: What's the chance that my problems could be PLS?

Thanks for the names of the dr's!!

I'll keep in touch.
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Old 10-05-2004, 09:38 PM   #6
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Re: What's the chance that my problems could be PLS?

My husband was told by a local doctor who is an expert on foreign diseases and parasitic diseases that Lyme does not exist in most of Michigan, where we live.
But I verified with our vet that 5 years ago our dog was dx'd with Lyme, treated and lived a normal dogs life from then on with no symptoms of illness. They also confirmed that they have documented many animals with Lyme in our area. So, yeah, many doctors are in denial from the start.
My husband is experiencing aching, muscle weakness, fatigue
and lo-grade fevers off an on. I think we will keep looking for another doctor, although he will be seeing a neurologist soom for an MRI.

Emily

 
Old 10-06-2004, 02:51 AM   #7
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Re: What's the chance that my problems could be PLS?

Hi Emily,

Thanks for the info.

At least I don't get the fevers. My temp is usually a few degrees below.

I wish you and your husband luck in finding out what's wrong.
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Old 10-06-2004, 07:17 AM   #8
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Re: What's the chance that my problems could be PLS?

Does anyone here know someone dx'd with primary lateral sclerosis???

The reason that I'm wondering about pls is because of the umn signs and the other symptoms I'm dealing with.

Would having hyperreflexia, bilateral ankle clonus, and twitches + all my other symptoms raise an eyebrow with anyone?

Three years ago I started getting throat spasms. That's 6 years into my problems. Does this happen with pls??

When my head and neck get too tight and heavy I lay down and take a nap. I can't stand in one place too long. Can't sit in an uncomfortable chair for too long. Can't jog. Can't jog on treadmill. Even walking for too long bothers my whole body.

Anybody??????
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Old 04-23-2008, 02:57 PM   #9
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Re: What's the chance that my problems could be PLS?

I have been tested for lyme 4 times in the last 6 years. If you've read up on Lyme you know it is a "bad" test and hard to get a true positive. I've had 3 negative and 1 equviocal. However, each negative has positive bands present but not enough to meet the CDC's criteria for Lyme. I've traveled 3 states away to a Dr. who has devoted 20+ years to lyme research and am currently being treated by him. This is my 3rd round of treatment.

I now have last stage symptoms of lyme with neurological complications. Trouble with balance, tendon's not working, Clonus, extreme fatigue, extreme difficulty walking or standing, memory problems. I could list 10 more "minor" things.

I'm facing surgery to help stabilize my foot and ankle to improve walking and tendon surgery to correct the Clonus problems.

I've not had a MRI or any spinal taps. I'm going to a neurologist in a few weeks.

I said all of this to really say....If you think it could be Lyme's, get educated and be persistant. Most Dr. don't know enough about it because of the CDC's standards are so rigid on the diagnosis.

 
Old 05-25-2008, 05:41 PM   #10
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Re: What's the chance that my problems could be PLS?

Hi,
I was dx with PLS in 92 at the age of 41...at CLeve Clinic Foundation.
Dr Mitsumoto, then Head of neurology saw me after I experienced some of yur same symptoms.
I was avid runner and noticed a dragging occasionly of the left foot. I noticed a finger would be spastic, again many of your same dx.
I would do the lymes dx, but I would see a dr with PLS training. Dr Pioro at CCF is a good start.
Good Luck
Going on 16yrs wiith PLS..
Quote:
Originally Posted by luv2read View Post
Thanks for the info.

I'm also from Ohio. I don't know if they've ever checked me for lyme or not. I've had many blood tests through out the years. Last blood testing done this year. Like over $1,000.00 worth!!

I have an appt at Cleveland Clinic in Nov. If this neuro doesn't think it's pd I'll for sure ask him to be tested for lyme.

Can lyme disease cause throat spasms 6 yrs into symptoms? If I get the tiniest bit of an itch in the back of my throat I will cough to get to the itch and then my throat will totaly close off. Once the throat muscles relax I can breath again ( usually within 20 seconds).

Does lyme disease cause tremors in the wrist and fingers AFTER using arm-hand muscles?

I don't know too much about lyme but have heard a few stories of people being dx'd with something and it turns out that it was lyme disease.

When my youngest was like 2 yrs old , he was playing outside. The next day I found a tick imbedded in his groin area. It must of went down his
diaper. We called the nurse and she told us how to get it off. We asked if we should save it in case he get sick. She told us to just throw it away.

So, yes there are ticks in Ohio!!! I don't know where in Ohio you live, but we live in Akron.

Can Lyme cause one to be hyperreflexic and have bilateral ankle clonus. This year was the first yr any dr has noted this and I've been having problems for 9 yrs.

Forgot to ask ya, Were you originally dx'd w/als? If so, you must of had an abnormal emg? Was the emg abnormal because of lyme disease? My emg was normal this year.

 
Old 11-05-2008, 07:21 PM   #11
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Re: What's the chance that my problems could be PLS?

I have been dx with PLS. Last month. My problems started about two and a half years ago. It started with creepy sensations in my legs, shortly thereafter I started limping even tho there was no pain. My left leg was affected. I started to stumble alot and tripping and falling quite a bit. The slurred speech came about 7 months into it, then weakness in my left hand.

Balance is a big issue for me. I can only walk across a hard flat surface even then it is very difficult. Currently my voice is almost gone, the only people who can understand me are family members and they are having problems understanding me. I still fall frequently, my guess is a wheelchair is not far off.

Betty60

 
Old 07-06-2010, 02:33 PM   #12
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Re: What's the chance that my problems could be Primary Lateral Sclerosis?

Hello,

I was diagnosed with PLS in Feb 07, changed to Upper Motor Neuron predominant ALS in Sep 07. Sensory issues probably aren't consistent with PLS, although some people with PLS say they have them.

Very brisk reflexes, clonus, babinski, jaw jerk reflex, tremnor's reflex, hoffman's reflex, spasticity, muscle fatigue, cramps, spasms, and progressive muscle weakness would be signs of PLS. PLS is very rare though (estimated to be about 1 in 10 million people or around 500 people in the US.. I suspect it is more common than that though. Usually they say if your symptoms do not progress into lower motor neuron signs within 4 years your diagnosis can remain PLS, otherwise ALS). Lower motor neuron signs would show up on EMG, would include muscle twitches (although some with pure PLS can have benign muscle twitches) and lead to progressive muscle atrophy. PLS usually has a mostly clean EMG.

I would just ask your neurologist why PLS isn't being considered and there may be something either in what you posted or something else s/he is seeing clinically that leads away from PLS. PLS is a diagnosis of exclusion.

Take care,

Rob

 
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