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stilljennifer

Member
Joined
Jul 29, 2010
Messages
27
Reason
Learn about ALS
Diagnosis
07/2010
Country
US
State
Alabama
City
Northport
This can be moved any time but I did want to say thank you to the people who have emailed me. I couldn't figure out my login so I couldn't respond. I CANNOT thank you enough for checking on me and I'm glad to say I am still here :)

I don't know how to start this. I guess I'll start with the good news. None of us think I have ALS. The bad news is that PLS is back on the table. They tried to make it a demyelinating disease, were even going to start shots for MS this month but the lesions I have do not explain the reflexes, gait, etc. so we are on our way back to the NMD department at either Mayo or UAB - waiting for the call from my neurologist.

I definitely have autonomic dysfunction. In April my heart rate was swinging from 35 to 180s and they were talking about a pacemaker but a change in beta blockers helped that tremendously.

My symptoms now are: weak, stiff and spastic left leg (my neuro said Monday that it is definitely progressing and that he could see a difference in several things with me, reflexes are even more hyper as well), cognitive issues (according to one doctor recently I could qualify for disability), trouble speaking at times (stumbling over words, replacing one word with another, etc.) still the fasciculations (though it is SO strange how you grow to live with it), and lovely, lovely drool from time to time. I have a little incontinence but not a lot. I am starting to fall and trip a lot again. I turn to go in a different direction and my feet want to stay where they are and that always makes for a graceful move :) People ask me how I can laugh but how can I not? Maybe there will come a day but in the meantime, it sure beats crying (which is what I'm trying not to do now).

Interestingly, my doctor told me that PLS DOES have exacerbations like MS, and the same things bring it on- heat, stress, exhaustion.

My neurologist has turned into the nicest person in the world and spends forever with me, even asks me for feedback and INPUT now. Imagine that. I almost fired him once (and told him nicely) and then I walked out on him another time (when given the diagnosis of PLS).

I haven't shared with many people (two actually) and it's so hard to believe. I don't know that I do yet (believe) and this has been going on how long? My life has been affected in every way, particularly because of the cognitive stuff.

So now that I got that out of the way, I am just going to say that I am going to FIGHT this thing. How? With my attitude! I'm going to work out when I can, enjoy life as much as possible..... Something I have actually been doing for a year now.
 
Jennifer,

Thank you for being creative and finding a way to post. I was getting concerned, as others surely were.

Your news is not good, but, in light of the other options, its still reassuring that its not any worse than it is. The cognitive issues (to me) would add more grief to living with the other problems.

I'll send you a message to your new user name.
 
Jennifer,

It is so good to hear from you again! Thank you for updating us and it is good to have you back.

You've helped to solidify an answer to my question regarding PLS behaving similar to MS when it comes to exacerbations.

Here's hoping we can brighten your day a bit!
 
Jennifer,
It was good to hear your update and your attitude about all of it. You have done wonders training your neuro. What is your magic secret? I am also very interested in the PLS exacerbations as well.

Lydia
 
Thank you to all of you and yes, Kim! It definitely brightens my day to hear/see you guys.

Lydia, the trick with the neurologist was that he SEES what I have been telling him more now. He saw the reflexes, saw the issues with my gait, saw my results from neuropsychological testing, etc. before but now sees the progression. One time he tried sending his nurse practitioner in and had her telling me that it was probably just this or that....and I was NOT in the mood for it that day :) so I said (verbatim) "I'm not buying this stuff you are trying to sell me. Let's get real here or I need my records for a second opinion" and that was that. He started getting really honest with me. I think that they really do want to give you hope and have hope themselves but now I see a totally different look in his eyes, not one of pity but close. Now when we talk he actually asks what I think and is very honest.
 
Hi Jennifer, so good to hear from you...sorry for your diagnosed. Like your new name...hugs, Linda
 
Hello StillJennifer! Welcome back! It has been a long time since we've heard from you. I'm very glad to see your back and very sorry to hear your news. How wonderful that your attitude is a good one and that you are fighting all the way! We're all here to help you do just that. Now that your back, please keep us posted on what's going on with you.
Take care!
 
hi jennifer, great to hear from you.

i ofton think we are quite similar with symptoms like automic dysfunction and my cognitive function is really failing.
short term memory is bad,can not multi function and can get confused.

your neuro is right about the similarities between pls and ms.
i was evaluated for several years for ms before pls diagnosed.
the grey matter can also be effected in ms thus having pls type symptoms.
with me heat,stress ect does effect the pls and over 11yrs i have noticed stability and exacerbations.

you sound like your in good hands with your neuro and he is on his way to figuring it all out.
take care.
caroline:D
 
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