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Maddy

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Hi. I have been reading these threads for about 6 mths now but haven't actually shared my story. As briefly as possible, I started noticing slurred speech during the summer of 2006, made worse by a half a glass of wine. Also, I was an avid runner and started to feel "cloddish" in my thighs while running around the same time. I would ask my friend "do I look like I am running funny?" or "do I sound funny?" By march '07 I notice when I was in NYC one night that I was super stiff trying to run across the street to a restaurant, once inside where it was warm I started to thaw out and was better after 5 min. Went to my gynecologist in March and told her these "minor" symptoms I had noticed and she got on the phone right away and sent me over to NYH-Cornell that day. I really thought it was nothing but the neuro put me thru all the tests that you all know so well, most were neg..the MRI of brain showed an "inflammation of something or other" the EMG was negative. By June 2007 the neuro said "if I were a betting man, I would bet PLS" he put me on Rilutek (thought that was just for ALS) 2 weeks after starting Rilutek I ended up in hospital with fever of unknown origin, atrial fibrillation, Congestive Heart Failure, pneumonia, arthralgia...discharged after 2 weeks (almost died and prior I had been the healthiest 46 y.o mother of 3 ever) more tests, went to Columbia Presbyterian to see Dr. Linda Lewis in September "07 -because I had fasisculations she couldnt rule out ALS but once she reviewed my brain MRi and EMG with head of ALS she called me and said def not ALS, probably PLS and I will see you in 20 years! Started Minocin bc of a drug study that showed it could slow down progression of ALS. My symptoms progressed rapidly and stopped Minocin after 6 months -dont know if the Minocin sped up symptoms or just natural progression of disease. Fast forward to now...My balance is poor and I have fallen about 5 times (not bad) one requiring 15 stitches in chin, my legs are super stiff-i walk like the Tin Man-but like everyone else it is worse in cold weather (60 degrees is cold to me now!). I can walk up steps fairly well but am so stiff going down and it takes forever! Need someones arm to get to car because any minor decline in sidewalk or a simple curb is almost impossible to walk down. My left side is more affected, my left hand is very weak and the OT said the Intrinsic muscles are affected. My hand looks spastic when I itch my nose or some action like that. My speech is very slurred, but still understandable...it gets worse as day goes on and almost impossible after a glass of wine. Emotional lability has been a problem for as long as I can remember-at least 21/2 years-I smile constantly and inappropriately, I laugh uncontrollably and the crying jags have been few and far between but bad when they occur. I did have "frozen shoulder" left side back in Dec '06 and doctors refuse to link the two but I know it is related to PLS. Stress brings on the muscle rigidity to the point where I feel like I have Parkinsons, I cant move. I have clonus in both legs and a tremor in my left arm starting in my R. I cant walk on the grass, gravel, at night, up or down a curb without assistance. Otherwise I am a normal, happy, wife and mother of 3 (my oldest son who is 17 has cerebral palsy and is in a wheelchair and cant talk!) OK you all get the picture, I sound like so many of you out there it is a comfort to know I am not crazy.
I haven't gone for a follow up EMG since the first one in March 07 because I really don't want to know if there are changes.
(By the way, my son with CP is gorgeous and he will be going to college next year)
I am being followed by my internist only bc I have been so healthy -ignorance is bliss.
Thank you for listening and sharing your stories which have helped me tremendously!
Sorry, that wasn't the least bit brief!
 

BethU

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Hi, Maddy ... don't worry about a long message ... it's hard to explain a history of symptoms in a brief message! But, do break up your text into paragraphs. It makes it easier to follow.

You've definitely got something going on. The falls concern me, along with your other symptoms. If it's been a year and a half since your EMG, I'd suggest seeing your neuro and getting some more work-ups done soon. Fortunately, you haven't been injured in your falls so far, but best to figure out what's happening before you are hurt.

Congratulations to your gorgeous son, by the way! You must be so proud of him.

And welcome to the forum!
 

Maddy

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Hi Beth,
Thank you for responding. I am 95% sure I have PLS. I attribute the falls to loss of balance which is a symptom of PLS. From what I have read here, falls are common.
 

Zaphoon

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Maddy,

Your story caught my eye. I really feel for you and hope you gain more clarity concerning your condition.

You mentioned you had a frozen shoulder in 06. I also had a frozen shoulder in 06 and a chiropracter was able to break it free. I think my troubles started in that shoulder as the muscles in my rotator cuff got very weak and atrophied, thus locking my shoulder up. The weakness spread to my legs (but legs weren't frozen - ha, ha) and then on to my opposite shoulder now in my lower arm (on my previously frozen shoulder side).

There just might be something regarding this starting with your shoulder. My previous EMG showed no LMN involvement. Your post is leading me to believe I, too, could wind up with a DX of PLS but I am opting for something different as is evident in my signature.

This intrigues me. We may have something in common with this frozen shoulder thing.

I try to make it a point not to post my own symptoms (too often) but found it necessary in order to fully relate to your posting.

Hey, would you like to be one of my forum friends? I could always use some more!
(Please, all quiet in the peanut gallery while I work!):mrgreen:

Zaphoon
 
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Maddy

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Hi Zaphoon,
I would love to compare notes, that's why I finally did this. There has to be a connection between frozen shoulder and my diagnosis. It took an entire year of PT and 3 cortisone injections to thaw out.
I continue to have neck issues-very stiff. I also have hyperreflexia which I failed to mention earlier.
I don't want to have another EMG because it will only tell me whether or not it has evolved into ALS. I would like to stay positive-I can live with a diagnosed of PLS.
Maddy
 

Zaphoon

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Maddy,

Yep, had two cortisone injections in my shoulder as well. I was working with my chiropractor to get range of motion and build up strength. I was building a little strength up and then the bottom fell out and the shoulder was weak again.

Ditto on the hyperreflexia, too. The neuros I've seen weren't disturbed by the hyperness as some people are just naturally that way. Shucks! I've never known if I was hyper reflexic or not as there's never been a reason to check before. It wasn't picked up on any of my Navy physicals.

As far as repeating the EMG goes, I understand. Once you've been given the PLS diagnosed, why not let good enough alone? I am sure you see the reason in the doctors wanting to monitor you, though.

Have you had any episodes with twitching/fasciculations? I have them along with cramps and stiffness. Some of the stiffness has let up, though.

Zaphoon
 
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Maddy

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Hi Zaphoon,
I have definitely had twitching/fasciculations (sp?) but neuro at Columbia was definite that based on my EMG and MRI of brain it was not ALS at that time. None of my doctors have seen the fasciculations but my husband has. I have twitching mainly in my left thumb and have had that for years. That actually was the first sx I ever noticed and I thought I might have Parkinsons. Muscle rigidity, stiffness in legs.
No, the doctors are fine with the way I choose to accept it is PLS and not look for it to turn into ALS. My internist is aware of all of my symptoms and says the only reason for further EMG is for peace of mind.
Is your speech affected?
Maddy
 

Zaphoon

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Maddy,

My voice has a tendency to get weak and fade out but only after I have spoken at length. My latest development is fatigue in the jaw muscles. It is sort of a constant, light fatigue.

I have fascics in both my calf muscles where there is also almost constant cramping. Whatever this is I have, it seems to me to exacerbate (hits harder - symptoms are exagerated). There are periods, usually at night/early morning, when I wake up with a very weak right arm and stiff legs, back and neck. At those times, its difficult to get out of bed because I'm so un-Gumby like.

I can't lay on my side at night either because my shoulders can't take it.

That's about where I am, in a nutshell (wishing to crack myself out/up).

Zaphoon
 

Maddy

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Hi
Very interesting! By the end of the day my voice fades out or I just cant form words-I get a little jaw tremor too.
I do get cramps in my legs at night but not excruciating. I just stretch my legs out and it helps. When I get out of bed in the morning my legs are as stiff and rigid as can be, but after a minute or so they loosen up and I can walk, however, very slowly and still stiff. Some days I look pretty darn good though-warm days mostly.
It seems stress of any sort exacerbates my symptoms.
Do you have a diagnosis?
I have to run out (not literally) but will check back later.
 

Zaphoon

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Maddy,

No diagnosis as of yet but a lot of what I have experienced and am experiencing is similar to you. I have no distall problems (fingers/toes) at all outside of my big toe not going down with the rest of my toes on the right foot plantar response (babinski sign).

I do get a burning sensation in my big toe on that foot, though, but not real frequently.

My signature bafoons my diagnosed status. I'm believing for PNS - Pinched Nerve Syndrome

Zaphoon
 
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Zaphoon

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Frozen Shoulder Thoughts

The Doctor that looked at my shoulder in March of 07 had an MRI done on it. It showed atrophy of the rotator cuff muslces, particularly, the teres minor. He diagnosed the shoulder as having tendonopathy. I had ongoing problems with the shoulder since 2005. I injured it after throwing a football for a prolonged period of time without warming up and thought it would eventually heal.

The atrophy was explained as non-use atrophy. Shucks, I had been lifting pianos on a daily basis as well as doing tuning but I had been babying that arm. The problem, to me, was that my upper arm was getting so weak, it couldn't be used to the extent it had been used before. I babied it from then on.

Here's my take:

1. The muscle in my right shoulder was probably the first to be affected (2006) by whatever this is (PNS? ha, ha) that has spread to other muscles/regions.

2. Hence, the atrophy? The muscle got weak and was atrophied due to much less use.

3. This weakness spread to my legs later in the year (07) fascics first showed Jun/08

4. Spread to my left upper arm/shoulder May 08

5. Spread into lower left arm/forearm Sep 08

6. Somehow got into my jaw? (fatigued feeling)

This is how I would connect my frozen shoulder with all else that has been going on.

Zaphoon
 
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brendapals

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Maddy,

Welcome to our happy little family! You will find lots of support on here, and the greatest bunch of people you'll ever "meet".

take good care and,
Never give up,
Never let up,
Never lose faith,
brenda
 

Maddy

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Thank you Brenda!
Maddy
 

lydia

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Hello Maddy,

I was intrigued by your history- so much of what you describe is similar to my own experience; more so than any other member here. I currently have a "diagnosed" of BFS and lowB12 given by an inattentive neuro so I am not sure how much stock I put in it. I see a movement disorder specialist in a month. I don't think I have ALS at all. My stuff has been going on for over a year and if it were I think I would be alot worse off.

Anyways, can't help it, have to list our similarities:D:
I also noticed slurring after a single drink (only beer!) and thought what is up with that? Then the slurring came at the end of the day, then earlier, and earlier, until now I can mangle words with no problem first thing in the morning.

I also have morning stiffness that wears off after a few minutes, and difficulty with going down stairs. A combination of the two is an accident waiting to happen. I have had no falls, thank goodness.

I also feel "cloddish" when trying to hurry by walking fast.

My left side is also more impacted, even though I feel issues on both sides. I have neuro-confirmed thinning/wasting in my left forearm (but curiously she still gave me a diagnosed of BFS).

Walking in dim light is very difficult ( is that what you meant by "at night"), and uneven ground is treacherous. I can do it, but it ain't easy! I described in an earlier post what happens if I try to take a step when my eyes are closed; my walking is nearly as bad if eyes are open and it's relatively dark.

My left hand works fine, but has issues with clumsiness, slowness, uncoordination, fine motor, etc. BUT it was your description of your spastic hand that caught my attention. When I eat finger food (popcorn, m&ms, etc) it is like I am a one year old trying to pick up cheerios...right up to the way my hand goes to my mouth. Like I have a toddler's hands-just kind of cram the food in and the hand kind of splays across my face!

In late summer I had an incident where I laughed hysterically and without end at the news of someone's death, and another day where I cried (sobbed!) all day for no reason. I stayed home from work, I knew I was in no position to be in public yet had to run errands later, and cried at the stores, at the gas station, etc. It was only those two times, and it hasn't happened again (the last was nearly 5 weeks ago) so maybe they were just flukes....but to laugh like that over the death....I'm not a jerk, really!

I have had twitches since Jan 07, clean EMG in summer 08. My original differential was MND vs PD, now both have been scratched in favor of BFS and low B12.

Welcome to the forum!

Lydia
 

Zaphoon

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Lydia,

Do you have any weakness in your muscles?
I would prefer a diagnosed of BFS but not sure if weakness is a hallmark of it.

Zaphoon
 
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