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Rainbow5

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Up front i thank anyone who patiently reads emails like mine. I had breast cancer(5 years cancer free double mastectomy) and remember looking for help and generous folks pitched in and provided support. So thank you.

I have been avoiding a diagnosis and could use some advice. I will explain but want to put my question up front: what are the benefits of a diagnosis? I.e. do medications exist that might prevent progression or is it better to wait until things are really really bad?

I am 52, female, normal weight. Had some challenges with breast cancer and a bad fall (broke 2 vertebrae followed by aspiration pneumonia). I have epilepsy but it is well controlled. Overall I still think of myself as the runner and biker I was in my 20's. my Dad is 76 and still flies an airplane so I expect to be healthy

BUT. Since 2007 I have had numerous neurological symptoms with zillions of diagnoses. Only now my daily functioning is compromised and I need support. I cannot do my laundry as it requires stairs. I am falling.

Previous diagnoses over the years - for leg pain -RLS, for overall pain, fibromyalgia; for tingling carpal tunnel; for bac pain, muscle spasms. And so on..

But the overall leg weakness is now debilitating. Low oxygen fatigue falling (ankle instability one doc said)

My internist ran some tests - MRI of my spine. Negative

I have severe hyperreflexia and other signs. She wants me to see a neuro. My brother has MS. I KNOW I don't have ALS and don't think I haveMS.

Just scared.
 
Hi rainbow,welcome to the forum.

With the hypereflexia and balance issues umn desease is a possibility but really only a neuro can evaluate you.
If the neuro can see any umn signs they may prescribe baclofen ,I was prescribed it for several years till my diagnosis.
I was evaluated for ms for some years as ms can cause umn symptoms with effecting the grey matter as well as white.
A diagnosis can take a while,some years but as you have had symptoms for 5yrs already it may not take that long.
When is your appointment?
You will find a wealth of information here and were happy to help.
 
Hi rainbow,welcome to the forum.

With the hypereflexia and balance issues umn desease is a possibility but really only a neuro can evaluate you.
If the neuro can see any umn signs they may prescribe baclofen ,I was prescribed it for several years till my diagnosis.
I was evaluated for ms for some years as ms can cause umn symptoms with effecting the grey matter as well as white.
A diagnosis can take a while,some years but as you have had symptoms for 5yrs already it may not take that long.
When is your appointment?
You will find a wealth of information here and were happy to help.
Thank you for your reply. I wonder did I need to post in another area as well cuz my leg pain and weakness is horrible. Is PLS mostly upper body?
 
Hi, pls effect all the body including speech and swallowing at some point.
Pls usually starts in the legs and progresses upwards over several years.
Posting here is fine.
 
:?

I have alot to learn. I appreciate the information...

I have not made the appointment yet. With my epilepsy I have seen neuros. all of my life. This involves seeing a specialist in motor issues but I think I need to take care of it. Quick follow up - when you are sick/laid up with the flu for a few days, do you find an increase in stiffness and pain? While I cannot walk very far on normal days, I do find that on days when I have NOT been up, the pain and stiffness are worse....
 
I am 52, little overweight, I felt peace after my diagnosis, at least you know what you are fighting, not knowing stressed me out. I was walking 5 miles a day this time last year, a mile and a half a few months ago, I still have the muscle but get out of breath easily. The staff at the ALS clinic and MDA have helped so much, the support that you get makes all the difference.
 
my umn syndrome is caused by something in the spine...but the neuros dont know where.despite umpteen mri,s,,,,,,its a strange how do you do, this nerve business.....and you dont need the flue to be stiff...sitting down is enough ..so you gotta stand up to loosen up...but you cant stand and toddle about for too long cos the legs get sore and heavy so you sit down.then you get up again. and so on all day....and bedtime comes...what fun...twisting and turning all night, me bed looks like a bomb hit it...the missus in the other room sleeping blissful...well she wouldnt get any kip sleeping with me...good luck to you but i think you have a long road ahead.....johnny
 
I'm sorry to hear about this. It
Is very similar in my case. From feeling pretty good to very unwell. Thank you again!
 
How do I reply to each person?my first reply was to Janie h.
 
I don't want to feed your fears with names to spook yourself with, but please trust me when I say tons of things could be causing this kind of situation. It really will take a good doctor and series of tests to work that out. It is worth it to find out if whatever is causing yours is curable or at least treatable! But also remember that some things really are just a series of different problems, not everything gets one big broad label, so don't demand a scary label if one isn't there. Just do your best to follow the doctor trail until at least all the curable and treatable options are looked into. Whatever happens, you will know you did what you could, and that is actually a big comfort whichever way things go.

As an aside, anxiety and fear causes symptoms of its own - real, physical symptoms. Those make it harder for the docs to do their job, so don't do things that make you more anxious during the diagnostic process. Don't spend time reading about things you might have or anything like that. Like quitting an addiction, this could mean consciously replacing that activity with something else. What that "something else" is, only you in your life situation can really know. But if you are experiencing leg weakness, I am sure there are challenges of daily living you can learn to deal with better!

Ok, now to answer your actual question. Is a diagnosis worth it?

I would say yes. Firstly, because you might have a curable or treatable condition, as aforementioned. But even if you don't, and even if you don't get a formal name for your condition, the process of diagnosis makes a trail of documentation. That documentation is how you would prove to your insurance, charities, and government agencies what you need in the future, if you do come to have such needs. My genetic results meant that my doc could only tell me verbally I had PLS, but was forced to write down HSP on forms. The testing to get there is what convinced ALSA that I needed a power chair loan. I am still living in that loaned power chair, and it, by itself, makes all the testing and whatnot worth it.

The downsides of a diagnosis are not many. The only ones I can think of are the inability to get long term care insurance at an affordable rate (but you are a cancer survivor, so that's not really in the picture, is it?), and that statistically people who get diagnosed seem to live a slightly shorter term for some diseases (and you beat cancer after a diagnosis, so I don't think you're one of those statistics). If your job would fire you for having the condition you have, you won't be able to keep it long either way, right?

Finally, we are a pretty helpful and friendly bunch. On topics like practical daily living advice, how to break less glasses when you fall, what brand of disability aids is good, etc - we are great at that! So please toss us any questions of that kind you come across. But also remember to keep an eye on yourself, and if you find our chatter making you more fearful, just back away for a while. We'll still be here when you have your next question. ;)
 
How did you come to post in the PLS forum?

You might try above in the "Do I have ALS" area for a broader response.
 
As always, Beky, Johnny, and Caroline are spot on, Rainbow. At least as it relates to PLS, the length of time -- and the multiplicity and variety of testing -- that lead up to a PLS diagnosis are ordinarily extensive.

In my case, I had CT scans (cannot have MRI), EMGs (all "clean" - albeit with some scattered fasciculations), spinal tap, and TONS of bloowork: Copper, HTLV I and II, CK, etc., etc.

If testings such as the above is clean, coupled with existence of UMN signs on exam (plantar reflex, clonus, spasticity, hyperreflexia, etc.), then neuros usually begin contemplating HSP or PLS. Even from that point forward, many - perhaps most - are reluctant to give a diagnosed. of PLS, because some provisional PLS diagnoses may, in fact, later turn out to be ALS.

For now, PLS is a diagnosis of exclusion -- and so it typically takes a very long time to diagnosis. I found that my energies were much better focused when I turned to symptom control -- which, for PLS'ers, is THE central quality-of-life issue, I believe. Symptoms are always "in your face" -- as Johnny says above, they're with you even in your dreams. All of this sounds somewhat dreadful, but it is quite true.

Meantime, Rainbow, you really should see a neuromuscular specialist - these are very specialized neuros who have seen PLS (while even THEY have not seen a lot, because the disease is simply not that prevalent, they've experienced enough to know it when they see it)!

Mike
 
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