Aa
Aa
A
A
A
Close
Avatar universal

PT Evaluation

Hello.  I went for a PT evaluation yesterday and it was very revealing.
Apparently my primary weakness is in my feet.  Not to say I am not weak everywhere else but that is the worse effected area.

Another symptoms that is popping up again that had disappeared ismy speech.
I seem to be very slightly slurring my words. Not every wordbutit becomes noticeable to me and the PT noticed it.

I also noticed that when I am talking to someone for any length of time, I start to sort of drool.
It seems like I am producing more saliva than necessary to speak.
This is mind boggling.

She also said she wanted me to be evaluated by the whole team which includes PT, OT, SPEECH, etc.

Another things she said that made me feel the worse was that she is worried that I am in danger of falling.

I already use one crutch to walk but now she said I should start using both and possible get a wheelchair for longer distances.

My symptoms only started last March and now they are suggesting a wheelchair.  WTF!
I am taking copaxone for a month and a half and the neuro said I have to wait at least six months to know if it is working.  

Question?  If they determine that it is a progressive type of MS, is there a DMD I can take or am I just out of luck?

Three PT also asked what type of MS I was diagnosed with and I told her I had no idea.

Remember, I was diagnosed based solely on my symptoms, not being able to walk, and my more than 30 brain lesions.

Any advise or words of wisdom are welcome.
I am trying to stay positive but every day seems bleaker.
My mobility and my body seem to be shutting down quicker than I can keep up with.

If it weren't for all the brain lesion, I would swear it was ALS!
THANK GOD it is not that.  I'll take MS!

Keep looking up!

Kerri
6 Responses
Sort by: Helpful Oldest Newest
Avatar universal
Dagun
Thanks for your words of encouragement.  Don't worry about using good words, I understood everything you said.

Julie
I appreciate yor prayers.  They mean a lot to me and I know I am being watched over.

Kelly
I think they start everyone on copaxone these days.  Since I was just diagnosed in october, they are waiting to see what happens.  My issue is that my mobility is declining even outside of flare ups.  But again, they have to wait and see.

Jen
Thanks for the Encouragement.  Maybe in five years or sooner I will plateau.  I think that is the hope,

Beth
You empower me to realize that being in a hair is not a nightmare.  
I do have forearm crutches.  I didnt like the ugly metal ones so i ordered gold ones online and get comments about them.  I didn't make that clear in. My post.  I also have a roll actor that I use in really bad days.  I have only used it nce when I brought the kids to six flags.  I used a scooter at the park.

I would prefer a wheelchair outside than the rollator.  They are very hard to manipulate on uneven terrain.  My question for you is where you purchased your wheelchair.  I thnk you have exactly what I would get.

Thanks everyone for your support.
As you all know we have good days and bad days.
They did suggest maybe a foot brace that would make me safer while walking but I heard those are a nightmare too.
I am still new to this and getting used to not being able to do whati used to do.

I'll keep you posted and keep looking up!

Kerri
Helpful - 0
1437229 tn?1296070020
Do not panic that you need extra assistance in walking.  Get that second crutch and use it.  In fact, I would get some forearm crutches.  They are so much better and easier to use.

My story is much like yours.  My ability to ambulate properly declined very rapidly.  I went from a cane to forearm crutches to a rolling walker in a matter of a few months.  Now, I do not leave the house except in a wheelchair, and often I use it around the house if I feel I need to.

The biggest challenge is wrapping your brain around the whole idea that the act of walking has somehow eluded you.  It seems impossible that what you have done for decades has suddenly gone away.  I had to come to grips with it, too.  It still hits me between the eyes at times, and I have a good cry over it.  The tool I now use to cope, is to tell myself that it is more important to be safe in moving around my home or when I go out than wallowing in the fact that I can not walk.  Your safety is vital.

So, embrace the idea of a wheelchair.  I was able to be fitted with an ultra lightweight wheelchair of around 15 pounds.  I picked out the color, the trim package (no kidding) and all the bells and whistles I could.  Now, when I run into people in the mall (some times literally, LOL) that I know,  they comment on how cool my chair is.  Then, suddenly all the self-consciousness is gone.  I even ran into a friend who is a motorcycle racer, and he ranted on how incredible my wheels and tires were, and how he wants those very ones for his bike.  In that moment it did not matter whether I was standing or sitting.  All that mattered is that I was safe, and could enjoy being out and about without concern, and saving my energy, too.

I do not minimize the challenge you will face accepting all of this.  It is huge, I know, but if I can do it you can.  If you have further questions, please feel free to contact me.  I will be happy to help.

Most sincerely,
Beth
Helpful - 0
1382889 tn?1505071193
Kerri!  I cannot answer your question but I can offer you my prayers and support.

You have a great attitude and a very kind spirit.  Yes, there are things worst than MS and ALS is def one of them.

None of  us know where our MS will take us. You are not alone in wondering what the future holds.

Know you have friends who care about you. Sorry I cannot help with your questions but wanted to let you know I will be thinking of you.

Julie

Helpful - 0
338416 tn?1420045702
Dagun, I think you did just fine!  

From what I hear, that's a great idea - just have a wheelchair in case you need it.  There were times when I would have been better off in a chair - but when I need a chair, I'm so tired that I end up on the couch asleep anyway.

You're in a difficult place right now, because they haven't seen how your disease is progressing.  So they can't diagnose you with a specific kind of MS.  That will depend on how you do in the next year.  If you keep going downhill and don't have any remission, then they'll probably diagnose you with progressive MS.  But if it looks like you get better at some point, then they'll stick you in the RRMS pile.

Your speech - you say it seems like you're drooling, and you're slurring your words.  I had a similar problem.  My mouth was numb, and the muscles around it didn't work very well.  I had a real problem with the left side of my mouth - very loose, and if I wasn't careful, I would drool out of that side.  I also bit that side of my mouth quite often, so it stayed sore.  (Numb to the touch, but if I bit into it, oh yeah, I felt that!)  My guess is that you're having weakness in your mouth muscles.  Mine got better, but it took a long time.  (3 years.)  

I'm sorry to hear you're doing so bad.  I hope you are in the RRMS category.  I wasn't sure when I was first diagnosed, because I seemed to be declining, and I saw no improvement for a long time.  Five years after diagnosis, I feel a lot better - probably as good as I'm ever going to feel.  All you can do is hang in there, take the medication, and see what happens!
Helpful - 0
Avatar universal
I'm glad that you are getting physical therapy treatment - as well as an eval for PT, OT, speech, etc.  It is scary that your symptoms started not even a year ago and they're already suggesting a wheelchair.  

If you have PPMS, like I think I have (even though my DX is RRMS), then unfortunately, the answer would be no, there are no disease modifying drugs for people with PPMS.  However, if you have secondary progressive, then some DMDs may work for you.  I'm surprised you're doing Copaxone, since it's not considered one of the big dogs.  But maybe it was a choice that you made based on a particular reason.  

Like you said - thank god it's not ALS !!! That would definitely be worse.
Take care,
Kelly
Helpful - 0
1689801 tn?1333983316
Hi Kerri, I am so sorry for everything that you're going through, I can't even imagine. I know a young woman here in Iceland that has just started to need weelchair on and off, she think's of it like "it's better to have it in case she gets tired". She started to get worse very quick, but now she's on meds and is alot better plus looking to a brighter future, but she ofcourse went through deep depression at first.

I don't know much, I'm just a limbolander still looking for answers, but I wish you the best in all of this and hope things will get better soon. Just keep on looking out for the best help you can, best neuros, doctors and informations, because nobody can take better care of you than you self. Sorry I don't have enaugh of English words to say what I want to.

My best to you,
Dagun
Helpful - 0
Have an Answer?

You are reading content posted in the Multiple Sclerosis Community

Top Neurology Answerers
987762 tn?1671273328
Australia
5265383 tn?1669040108
ON
1756321 tn?1547095325
Queensland, Australia
1780921 tn?1499301793
Queen Creek, AZ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease