PLS Therapy

[stilljennifer]

My counselor says I should be here so I am. It's not that I don't like any of you. Actually I like some of you a whole lot. I just don't want to be here.

So my neurologist (who keeps saying I have PLS) sent me to UAB who called me back again today after I finally sent my records. He called me twice actually. He also put some dude on my case who calls me and tells me what to do. He said I am presenting with a lot of issues. Oh really? Google this. Weakness, pain, and fasciculations. Oh wow, we see/hear that all of the time, right? Then add in autonomic dysfunction.... bradycardia and tachycardia. Oh yeah, don't forget Supra-ventricular tachycardia... but shhhhhh! Nobody knows. Oh and the one that I get teased about the most that only ONE person knows (my husband outside of the doc who told me)... I have cognitive decline... so bad that I qualify for disability... so bad that my functioning IQ is 20 plus points below my IQ.
Yes.

You got that right. That's why my counselor wants me here. Nobody knows. I'm tired of telling anyone. I'm tired of IT. I'm tired of being tired. I don't want pity, confused looks...I AM CONFUSED. How am I supposed to counsel/support them?

Anyway, I see her every two weeks now. She keeps telling me I have to think of my health in all of my decisions. My husband wants to take care of me. I don't want him to. I don't want him to see me get worse. He has already seen some of it.

So I am here and apparently whether you guys want me here or not (feel free to kick me out, Al, I tried to get my doctor to fire me today, too)....

But they wouldn't. Instead I get a team. A team. I get a team and a new EMG... Thursday... along with twenty something blood tests... along with a person on my case. I HATE THIS. I DIDN'T ASK FOR THIS. I tried so hard to get out of this. I even wrote him a letter and asked him to postpone it when I sent my records. Instead I get a freaking team. I think I'm going to go find a nice pile of sand that I can put my head into.

This is my last doctor. If he can't help me, forget it. I'll just get my teeth cleaned, my gyno visit and take my vitamins.

 

[stilljennifer]

Re: therapy

That was a downer, wasn't it? Actually I want to clarify that I love that we have this support forum... It's been such a huge help. So please know that I am very grateful. I just wish that none of us had to deal with this at all. Maybe my attitude will change; I'm working on it!

 

[AKmom]

Re: therapy

Sorry for your frustration! My problem is the exact opposite. I don't have a team. I can't find a neurologist in my state that wants to take my case because they feel incompetent. Thus my regular gp who doesn't know anything about this disease is treating me based on information I have gleened from this site and research that I have sent him.

I know what your going through. Its difficult to accept that we are not infalable and have a life altering illness. But there comes a time when you need to get hold of yourself and take charge. First that comes with acceptance. Because if you do not accept it then you will spend all the valuable time and energy fighting the inevitable verses working with it and making the most out of your limitations. I have noticed that when I get stressed over anything I tighten up into a spastic mess and no amount of baclofen or zanaflex help. Yet now that I have reconized this fact and have met it head on with decisions of not taking on the stress by changing my attitude about the situations, I have been able to master my current destiny on how I deal with stress and the physical aspects of controlling a PLS symtom without taking extra meds.

My point is the faster you come to grips with what is happening to your body the faster you will be able to find joy again in the things that really matter.

You are welcomed to the group and we will be here when we can to help if we can with encouraging words and friendship as well as info that we might know. Its a great resource and it sounds like your docs and hubby are all in support of you. Take that and inbrace it because you are truely blessed. Its much better than feeling alone and having to deal with PLS.

 

[stilljennifer]

Re: therapy

Thank you, Joyce, you are right- I am having a hard time accepting this. I mean still, maybe they are wrong? And then last night my husband pointed out that they are checking for lower motor signs with the EMG (again). It's been well over a year since the EMG. Surely it isn't that. I haven't had much of a decline; I really don't see the point in doing this again but I am... most likely my very last EMG. My neuro says PLS, my new neuro (that he sent me to) has said everything from SMA to Mitochondrial disease, to MSA to PLS and even mentioned some kind of tumor but I couldn't understand him on my cell (bad reception at the moment) and didn't want to ask him to repeat it. They are also saying that they think of everything is related.

We (my husband and I) work hard at finding distractions.

I am sorry you cannot find a team. I hope that you do and very soon! I'm going to try to be a supportive person on the board and not just sucking up support like a sponge

 

[Alyoop]

Re: therapy

You are very very welcome. We have all been through exactly what you have and are going through. Your thoughts mirror what I have been through over the last 3 years. tets test tests, and the best of all was actually the psychologist. I thought at first it was just babble and no one could ever help me with the despair that I felt losing my planned fiture as supergran, etc. In fact afterseeing him for 6 months, he helped me taks a grip. No soft pussy footing around with my guy. Just raw in your face truth. No always easy to hear but it beats the you will be fine from everyone else.
You are facing a huge change and you are grieving for the old you. My heart aches for you. Hang in there and feel free to vent on the forum whenevr you want. Noone will understand more, and don't fire your doctors, you can at somestage take control of the situation regarding tests etc, but not now its too early. Once i knew where I was with the illness, I declined my repeat EMG in a couple of months and said I will come back when I feel things slipping. He said that was fine, so I know I can see him whenever I like.

Love to you
Aly

 

[Zaphoon]

Re: therapy

Jennifer,

Thanks for taking the advice of your counselor and coming back to us. If I could, I'd take your place on the EMG table.

 

[Tokahfang]

I don't think there's any one of us who hasn't had a day where we threw our hands up in the air and gave up on life.

I haven't spoken of this here, just to my closest family and friends, but your post prompted me. I just discovered this month I am experiencing cognitive impairment, specifically in my executive functions. I haven't had it all tested our properly, and I'm not sure I want to, but when I'm not on my Provigil, it shows itself very obviously. How do I cope when my practical planning bits are busted? Poorly! And I want to tell people, so they'll keep an eye on me, but I don't, because I don't want to be treated like a child.

Do I tell my doc? With my situation being what it is, being able to explain to them what my body is doing is essential. (Very few have ever heard of UMNDs.) I don't think they would take me seriously, or that I would get proper care if I admit to what my brain is doing. But I am the first documentation on this gene mutation, and I don't want to mess up that data. So when do I let them in on it?

So on some days, I just give up. I don't do anything, read a book or something all day, ignore my calorie count. The next day I usually feel more equipped to take on a day. This is all too much to wrestle with for every day to work.

 

[Alyoop]

Beky I talked to mu husband about this cognitive issue a few days ago, as I had a day of messing up my words. I could just be an aura connected to my epilepsy, but I asked the question about UMND really causing cognitive issues. He said absolutely, its well known. If its messing with your motor nerves its messing with a whole bunch of other brain functions.
Maybe we can all go ga ga together!

 

[Tokahfang]

Executive impairment is pretty common with the gene I have mutated, but doesn't usually progress to full on FTD. I very much hope that is the case for me, since I have managed the checklist of every other SPG7 complication so far except for cerebellar degeneration.

MND and the front temporal lobe are definetely linked, I was under the impression the other parts of the brain came out ok?

 

[arkallen]

Ahhhh,
This thread really is about not knowing what's next isnt it? Jennifer, I understand much of this feeling as well, and I so hope that you are finding peace inwardly no matter how confusing it gets outside. Sometimes I feel like I really need to just put the medical community at arms length. They mean well I'm absolutley sure; but it can all be incredibly intrusive and it's easy to feel controlled.
Blessings to you!

 

[stilljennifer]

Wow... you guys are incredible. Kim, you are so sweet but I imagine you have already had your share of EMGs plus your legs are probably hairier or I might give it a chance.

Beky and all who are talking about decline, if you want to know about executive function decline and keep an eye on it, get a referral to a neuropsychologist. That's what my husband is (newlyweds=3 months). They will test you and then very likely follow up in a year or so. There was a very obvious decline and the notes the doctor made were depressing like "Jennifer probably has a hard time finding a sense of direction during the day", "Jennifer will have trouble coping with the decline".... "Jennifer is a getting dumber by the day"... Okay, not the last one but the other two and then some... Fun stuff I tell ya...

I have to admit that I have been blessed in the doctor department lately. Once my regular neuro realized that my reflexes were pathological and my gait has worsened (he observed it in his office one day), when he saw two different reports on my cognitive decline he was all over it. Now I'm going to a teaching hospital and this guy is literally jumping with excitement over my bizarre case. Beky, are there any teaching hospitals where you live?

So you guys are AWESOME! Thank you, thank you, thank you. I'm so glad I have you and this forum!

 

[caril]

Re: therapy

Jennifer,

Thanks for taking the advice of your counselor and coming back to us. If I could, I'd take your place on the EMG table.

Yes I totally agree with this. This is very good job you have done.

 

[Al]

I won't throw you off Jennifer unless you're really naughty. Or won't listen when you ask a question, get a good answer and then argue with the people trying to help.
So far you're doing just fine.

AL

 

[Alyoop]

Hey Jennifer
Can't believe that someone else is exactly like me. It's kind of comforting in a very bizarre way! Sorry, I really wish you weren't going through this. Because it's so rare, most neurologists in NZ have not seen it, probably because it's population is only 4 million. My neurologist said he had spent hours coming to the decision that it could be nothing else, and how hard it was telling a senior neurologists wife, that she had a rare condition.
I asked hubby whether or not I should get cognitive testing, he thinks it's a good idea. Will organize it when I get back from holiday. I asked for it when I was seeing a psychologist at the beginning of the year, but he said not while I was so stressed. That in hindsight was a good decision. It will be good to have a baseline if I am overreacting.
Bet you are finding it strains to be a "member" of the neurological "family" with a neurological illness, especially a rare one.

Aly

 

[olly]

i dont really talk much about my problems on the forum but after reading the above posts i feel the need to share.
my cognitive dysfunction is so bad its boardering on dementia and effects doing simple daily things.
i forget to pay bills,got two summons a few weeks ago and had to scrape together imediate payment.
it can take me days or weeks to get round to doing something,everyday i remember them minutes later forget.
i was very good at writing but now i find i substitute words because i can not remember others and thank god for spell check.
more worrying is i forget time,sometimes i start to do something and can not remember how to do it.
forget to turn things off like the cooker............which the other day after putting the pan back on the ring nearly burnt the kitchen down.
some days i feel i am going mad............well madder than i was before pls lol.
pls i think is partly to blame but after 10yrs on baclofen i think is also a culprit.