Doc Says He Thinks Its Pls

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I've never heard the doc saying anything to me about CIDP. Maybe I can ask him about it next appointment. I even tried to lead him from PLS today by stating, "So, we still don't know what this could be." His reply was, "Clinically, it's primary lateral sclerosis but I'd like to see you again in mid March to see any further developments."

Are they still looking at CIDP for you and if so, I was wondering what your thoughts are on that?
 
He wrote "possibly PLS or a demyelinating disease" in notes from last visit.
 
Hi Kim,
I read your posting this morning, and I have thought about it all day wondering what I should say. I always worry about saying something that sounds trivial or wrong somehow. Absolutely PLS is better than ALS, but still it jolted me to read that is the conclusion (so they think at this point). I guess I was hoping for some flukey more minor thing like Lyme or who knows what. Have you discussed with your neuro. the possibility of trying corticosteroids for a brief period--just in case it is an inflammatory process of some sort? I still think of all the myopathies and vasculitis type disorders out there. Being a retired RN, I would want them to experiment a little on me with antibiotics and the corticosteroids just to see if there is a positive response. have read that some PALS have had a trial of IVIG, antibiotics, and steroids. Just my two cents as I have that kind of personality where I would want things tried. Sort of like the poster from Utah whose husband is trying the anabolic steroids and I think tried some antibiotics too. Sort of living by that quote, "Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out, shouting, 'WOW . . . What a ride!' " All the best Kim.
Laurel
 
Hi Kim. Forgot to mention that I think walking two miles is too far if you are feeling tight and crampy muscles after. Perhaps this is the time to buy a Segway? I want one <g>. Seriously though, only exercise to the point of not causing discomfort after.
Laurel
 
Laurel,

I love that quote at the end of your post! Skidding in sideways, baby! Yep! Quite a ride! Your idea of trying some kind of treatment for something else sounds good to me! Right now, my legs are very, very crampy and I'd almost like to shoot them to put them out of my misery (shooting them with novacaine sounds good at this point...).

There are some "just added" photos of my oldest daughter's graduation from Armstrong University in Savanah, GA. on my profile page. Thought you might want a look at part of my beautiful surroundings!
 
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Kim-

Any step closer to an answer lightens the load. I am glad they are hunting this thing down and sorry that you didnt get the piched nerve diagnosed. please know we are here for you. Keep your awesome attitude. I thought about you again at work. I have a patient that is a primary Lakota speaker. We use alot of sign language, as my Lakota skills are very slim. They (Lakota) used to be code talkers during the War. Its amazing how thoughts of you guys bless my day.

Love,
Cindy
 
Kim

I am sorry I have not been on in days. I guess you win. I am not ready to accept MS like the DR said, to many things don't fit. I have really been worried about you and wanted you to know I am thinking about you and praying. I hope your energy level can stay up. I know one thing for sure, if a good sense of humor gets you through even the hardest times, You already have this thing licked. Stay positive and strong and know we are with you through this.

Renee
 
hi kim.
sorry to hear your neuro suspects pls but its still too early for a definate diagnosed yet.
it takes 3-5yrs for a definate diagnosed,i know some on a pls forum who have gone 10-15yrs before diagnosed of pls as its so hard to tell other than clinical symptoms.
i explained about umn progression in another thread on the pls forum the other day.
umn does not or should not effect just one limb or side in general.
it progresses symmetrically but during the desease course you could get a umn lesion at a certain point in the pyramidal tract that may cause more severe symptoms in one limb or side,i have had this many times and felt like i had a stroke.
i put the wikipedia info on the other thread about all this.

jennifer
i was suspected of having ms for several years but mri's all ok,the fact that my optic nerves were always ok confirmed it was not ms.
optic nerves nearly always show signs even if you dont have eye sight symptoms.

here is the umn info i mentioned.
Upper motor neuron - Wikipedia, the free encyclopedia
Upper motor neuron lesion - Wikipedia, the free encyclopedia
Corticospinal tract - Wikipedia, the free encyclopedia
 
Cindy, Renee & Caroline,

Thank you for your thoughts. I'm not claiming 1st place in the race just yet, Renee and like you, not willing to accept this as anything other than a differential. I agree with Caroline in that it is just too soon to pin PLS on me but, everything fits the picture which is why the neuro mentioned it last visit and was pretty adamant about it over the phone yesterday.

When I see him next month, I will also request copies of records of everything done so far. I am a little concerned about the progression of this "thing". Seems a little fast for my liking. I'm not whining but please give some cheese with this anyway.

You all are very kind and are making this a lot easier to go through!:)

Kim
 
Zaphoon, what a beautiful family! Gosh, I live in GA, in the opposite corner of the state, but have not even heard of Armstrong. Got to get out more I guess - never have even been to Savannah.

No doubt you can keep your spirits up - I guess if it has to have an LS in it better to start with a P than an A. I know that is little solace, but keep looking for that pinched nerve!
 
Kim, I don't know how I missed this. I'm stunned...I really thought/hoped it would be something different. I don't know what to say. I'm grateful it isn't an ALS diagnosed but still....PLS is no easy path, but you know that already.

I hope that you do try what Laurel suggested, just to see; to make sure. And as Olly says, it will take a while for this to be finalized. I understand the fear with the twitches, as you and I share so many symptoms.

Take care of yourself, and don't walk for 2 miles! That would put me under for days starting before I even finished the trek. No delayed onset for me!

Laurel, I also love that quote at the end of your post. It is amazing how metaphors and imagery have the potential to support us in times of need. That one is a keeper!

Lydia
 
KTMJ,

Thanks for the nice comments on my family. I have a 3rd daughter that wasn't able to make the graduation due to ongoing classes of her own. I'll post some pictures of her soon.

I would really prefer having this illness/disorder tagged as something other than PLS. I don't like the idea of having to wait things out for LMN involvement to be ruled out.

Lydia, thanks for the encouragement! I'm still hoping the pinched nerve will show up somewhere.
 
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Zaphoon,

I'm sorry to hear of your diagnosis.

Has an EMG been done? How long have you had symptoms?

I understand your fear of having to wait and see. It is the most horrible thing. My mom has had symptoms for 3 years but had two years of fatigue prior to that. The doctor has included the fatigue years in his count of symptom onset and has now diagnosed her with PLS per his 5 year count. The wait is very difficult and in honesty I still worry because I don't know about the relevancy of the fatigue years. It's so hard. I'm sorry you too have to go through this.
 
SRAL,

Thank you for your kind thoughts and I am sorry to hear your mother has been suffering for as long as she has. Too bad somebody can't come up with a way to cure MND's.

AS far as how long I've had symptoms, that depends on whether or not it started with my right shoulder. That could be 3 or 4 years back. My legs started feeling weak Nov/2007.

The answer to your EMG question is yes, I had 2 this past summer and they were unremarkable.
 
Zaphoon,

Although you have been suffering for awhile, I'm happy to hear that after 3-4 years you have had 2 clean EMGs. This is always a good sign. The fact that after 3-4 years you're still totally functional and mobile (even if much slower than usual) is also good.

I hope that you can find your inner strength to face whatever the diagnosis is even if it ends up being PLS. There is much worse. And as for the fear of it turning to ALS, having such a slow progression and it being 3-4 years since first symptom is a good sign. Live for the moment and try not to think of the "what if".

I see the courage and positive spirit of so many forum members and it puts things into perspective for me. These people are amazing. If only such inner strength could be bottled and shared.

Have a good night.
 
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