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Can we talk symptoms?

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Sille

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DX UMND/PLS
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Hello,
This is my first time posting and I've only been poking around for a week as it was a week ago that my Neurologist said he thinks I may have PLS. I've only had my symptoms for a year and I know that it can take many more for a definitive diagnosis. With that being said, I'm wondering what other symptoms people are experiencing that are not the traditional. I'll start with what I think my traditional symptoms are:
  1. Poor Balance
  2. Difficult to walk
  3. Morning spacisity
  4. Diffcult to stretch my legs when I wake up
  5. Wobbly legs when I go down stairs
  6. Legs really don't work when I get the chills or anxiety

Here are a few I don't see on anyone's list:
  1. Intollerance to alcohol (I get intoxicated and my legs don't work very well after 1 or 2 drinks)
  2. My first cigarette of the day is dibilitating (I know I should not smoke)
  3. Fingers tingle all the time on my right hand
  4. Small of my back is always ichy
  5. itchy head
  6. ears feel full like they need to be popped all the time
  7. penis is extremely sensitive during sex (sorry if that is to much info)
  8. It's not difficult to pee but feel weird (hard one to describe)
  9. heartburn comes on much more easily


Anyway, I think I'll be posting much more often as I go through the coming weeks, months and years. Seems like there is a wealth of knowledge here that I just don't find anywhere else...being that this is very rare and many doctors know little.

Also, anyone have any ideas about forums for PLS that are more active? Just checking.
Thanks
 

tracyliz

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Hi Sille,

I doubt you’ll find more active forums, because it’s a very rare disease, I think I read estimates are 500-2000 cases in the US. I’m excited one exists at all!! ��

I've never read or heard of any of those symptoms in your second para being associated with PLS. For me personally, I don't have any of them.

My progression of symptoms, over 3 years, in 6 month increments, looked like this:

-January 2015: 49 years old, ridiculously healthy, no afflictions ever, very athletic and strong.

- 3 years ago Jun 2015 (50): First fall...I tripped on my toe when racing my nieces and nephews.

-2 1/2 years ago Dec 2015: Could still hike and scuba dive, but ditched the high heels because I started losing my balance and walking oddly. Noticed my toes seemed to keep catching and tripping me, and it seemed like the timing was off on my right leg. Told my doc, she sent me for a brain MRI which came back normal. At the same time, I had elevated CA125 (an antibody that could indicate ovarian cancer) and had a full hysterectomy. Biopsies came back normal. (Maybe not relevant, but autoimmune so who knows.)

-2 years ago Jun 2016: Had to limit the difficulty of hikes, couldn't climb well. Seemed like I walked like Frankenstein when cold. Started to fall more often. Doc referred me to muscoskeletal who identified spasticity and referred me to neuro. Spine MRI came back normal. (No MS.) Tests for all sorts of vitamin, toxic mineral, blood, etc ad nauseum came back normal, eliminating a whole slew of ailments. Neurologist tells me I have hyperreflexia, upward flexing toes, and spasticity in all of my limbs, worst on the right side, especially right leg.

1 1/2 years ago Dec 2016: My right hand begins to respond slowly and can’t do the fingers flicking thing very well. My left leg now behaves kind of like my right one; both seem hard to move correctly and draggy, like the timing is off. EMG test (teeny needles poked in your legs to test the electric signals) came back normal, which eliminates more diseases. I’m in physical therapy now. I start taking baclofen. Not sure if it helps or not, but doesn’t seem to hurt.

1 year ago Jun 2017: Walking with a hiking pole (too vain for a cane) to avoid falls, which happen about once a week now. Both of my hands move kind of funny now, and my fingers rest oddly (second finger bends down, 3rd and 4th rest right next to or on top of each other) although this doesn’t affect normal activities. Sometimes I get surprising urgency to go, and occasionally can’t quite get there in time and have accidents. (I manage this better now just by ensuring I go often.) Another autoimmune thing surfaces, elevated “VGKC” (Voltage Gated Potassium Channel), and because of the autoimmune stuff I go in for IVIG (plasma transfusions via IV; you get them for 4 hours for 4 consecutive days) which in some rare cases fix symptoms like mine. Sadly, no effect. Another neurologist (I have 3 now, working together, that specialize in different areas) starts me on a series of drug trials, none of which seem to have any positive effect, although some seem to make me groggy or irritable, and I quit them all after a short time, except baclofen. Initial panels of genetic tests come back negative.

6 mos ago Dec 2017: Still falling about once a week. Went to two walking poles after a really scary one that whacked my head pretty good, and although it didn’t do damage (superficial) it bled like hell and really scared me. (The worst falls are the “backwards” falls because you can’t protect your head.) I have a serious “shuffle step” going on now. I have always had “restless leg syndrome” in that I get a little leg jerk when I’m really sleepy, but now I get that jerk even when not sleepy, and it seems to pull my whole body, and makes me gasp when it happens sort of like when you get a random shiver, but much stronger. Another autoimmune thing, this time the thyroid antibodies. Thyroid issues are pretty common, but because random antibodies seems to be a thing with me now, got the full body PET CT Scan with an oncololgist and came back clean for cancer. The endocrinologist has me on meds to fire my renegade thyroid. Choked up and lost it when I finally asked the doc for a handicapped parking tag. Gave in to a wheelchair in the airport, it’s just too big and too hard.

Now: A walker. Which contrary to what one might think is actually quite empowering because it improves self sufficiency, I should have gone to it earlier. Not only do I not fall (hallelujia!) but I’m not clinging to walls when I use it, and I can carry stuff on it, which is AWESOME…it’s very liberating. (Funny how we adapt to the “new normals”, right?) Also, I have started to develop cramps more often, something I rarely had before, in my shins and the top of my forearms. (Previously everything was painless.) I have trouble lifting things and lateral movement with my right arm, but not sure if that’s due to my disease or the last vestiges of a torn rotator cuff from a fall a few months ago. And my whole body jerks, although still not often, seem more severe. Also I wake up every hour (weirdly like “on the hour”) almost every night now, so am going to a pulmonologist next week to see if everything’s still cool with my breathing. I can still drive. And I work. And I’m still doing a lot of things, just learning how to do them differently. Walking’s pretty hard now, though, and exhausting. My symptoms ebb and flow (good days and bad days) with a downward trend, but always seem worse if I’m tired or cold.

I don’t have a diagnosis yet for PLS, but my differential diagnosis is now down to either that or HPS. My primary neurologist believes it is PLS, but I think we need to do one last genetic test to confirm which it is. He noted that I don’t have a raspy voice and my face and tongue are ok, but other than that, all roads point to PLS. My mother’s first cousin had ALS and died two years after diagnosis. My mother’s brother has MS, but is doing just fine in his 70s. I am a gulf war vet who served 5 deployments, and we are 2X as likely to develop ALS, which in my thinking probably is true with PLS also, there just aren’t enough cases to say. I’m reluctant to do the genetic test because I’ve decided to file for disability with the VA and don’t know if the diagnosis would screw up my chances.

Very long winded answer to your post when I could have stopped at the first sentence, ha ha! I guess it’s the first time I’ve written down my symptoms like this. Anyhow, tells you what my symptoms were and weren’t, if helpful.
 

lgelb

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Re: Is it something else?

A procedural note, Sille -- I moved your new thread post to this one, to keep them together. Then I moved the thread to where people who do not have definitive diagnoses yet go.

Best,
Laurie
 

Clearwater AL

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tracyliz and sille...

I must point out both of you have claimed on your "Bio Interest to have been
diagnosed with UMN/PLS... when in fact neither of you have a confirmed diagnosis.

tracyliz, your 12 paragraph, 4,000+ word case study adding to someone else's
Thread when you do not have a confirmed diagnosis lacks accomplishment.

Maybe both of you might consider changing your Bio Interest... until you
actually have a confirmed diagnosis. :)

Sille... "I know my progression is still in its infancy and I'm yet to be definitively diagnosed."

Tracylz... "I don’t have a diagnosis yet for PLS."
 
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tracyliz

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Hi Clearwater,

Perhaps it wasn't intentional, but that came across pretty mean.

For as the bio, there's no choice for "not yet diagnosed". When registering, the instructions on the site says to leave all 0000s for the date if one isn't yet diagnosed, which is exactly what I did. Sorry if you find that offensive for some reason, but that is how the site registration is set up.

As far as my long post, frankly, you didn't have to read it. You could have skipped right by it and also avoided having to do a word count. I was responding to his question about symptoms, and he apparently appreciated my answer. Sure it was too long. First time I've ever written about my experience, or talked with anyone with symptoms anything like mine, finally not alone. I'm surprised I was greeted with such a cold response, it is surely not what I expected. To say I "lack accomplishment" is simply unkind.

Perhaps you had a bad day. I'm a real person too. Let's please treat each other with mutual respect and kindness as we move forward, thank you. Peace.
 

tracyliz

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Hey Sille,

My neurologist is suggesting I get the surgery for a baclofen pump, so I was reading up on the side effects of baclofen. (I currently take it, but have reservations about losing control of the dosage.) When reading the side effects, there were a bunch of rare side effects that sound like what you described. Are you taking baclofen? If so, maybe that's a question worth asking your doc about?

Cheers,
Tracy
 

ShiftKicker

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Tracy and Sille-

Unless you have officially been diagnosed with Motor Neuron Disease, we request folks stay in the DIHALS section only. While PLS takes years to be formally diagnosed, neuromuscular specialists can tell you if what you have is "a" motor neuron disease- which includes ALS, PLS and PMA. A diagnosis of "Motor Neuron Disease" does enable you to post outside of the DIHALS section. The normal procedure is for people to start their own thread in DIHALS if they have not received a firm diagnosis and not start posting within the forum proper or on other people's threads until a specialist has made a diagnosis.

Tracy, you are in the muddy and unclear area between two different diagnoses- PLS or HSP. That's a difficult place to be. I recommend you check out the SPF (https://sp-foundation-org.presencehost.net/), as it is a group that incorporates both possible diseases and has a lot of information. I also recommend you have a look at these two threads:
https://www.alsforums.com/forum/do-i-have-als-als/30138-getting-diagnosis.html
https://www.alsforums.com/forum/do-i-have-als-als/26591-read-before-posting-answers-common-concerns-about-possible-symptoms.html

Sille, you have some ways to go before receiving a diagnosis. It sounds like you are on your way to receiving the proper medical care you need. Please let us know what your next steps are with regards to your path to diagnosis.

In the meantime, please let's keep this thread for Sille, the original poster, to report their diagnostic journey only. Tracy, feel free to introduce yourself on your own thread so the conversation can focus on your own pathway is not mixed in with other concerns as Sille is not yet diagnosed.

Thank you.
 

lgelb

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Al, I moved the initial thread from PLS to DIHALS so that it is on me. I should have inserted a comment more clearly in the thread. Sorry about that.

Best,
Laurie
 

Sille

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Thanks for your thoughts. I don't need the pump yet and have not been taking anything, Just trying to be proactive and arm myself with as mush information as I can.
 

Clearwater AL

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Tracy, I take 90 MGs a day. 30 + 30 + 30. My Neuro has discussed the pump.
And we have discussed Riluzole.

Baclofen is like a trap... as you know you can not just stop taking it. That
can be dangerous. Cutting back defeats intent. The pump has advantages
versus taking large amounts orally... GI track.

PS. Didn't mean to come across mean. Just a topic that has been debated.

As for your comment concerning my comments to the the length of your
post. You made the point... most readers do skip over long posts or just
skim read it. Minute details are insignificant.

Many members here are not capable to read numerous paragraphs with
numerous sentences. Just for future reference. :)

I do apologize... sorry if I came across harsh. Even this one. :)
 
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ShiftKicker

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