Symptoms eased

[paul318]

Do people with PLS ever have periods where there symptoms ease?

I have had a few short period where my gait has improved to normality. The longest was early in my illness and lasted for 10 days. I have had 3 other times it has happened which lasted 5 days, 2 days and three days. Not all of my symptoms go. I still have numbness in my toes and fasiculations in my legs, but my gait is normal. I am into day 2 of one of these mini partial 'remissions' at the moment. They usually end with me getting gradually worse over a period of a week or 2 until I am worse than I was before the 'remission'. Either a symptom ends up worse or a new one appears. I have a feeling that this easing of symptoms would rule out PLS, am I right or do people with PLS get short period like this?

Paul

[jl73]

Neurology is too difficult to armchair guess and come up with the right thing. I think that someone said it's best not to worry so much about what is causing it, but to treat the symptoms. Get the treatable stuff ruled out first. Eventually, keep track of your progress and you should see patterns emerge over time.

[olly]

hi paul.
it is possible to have remissions and things may appear to be a bit better,this happened alot during my early years.
it was because of this i was convinced it definatly was ms i had.

as you know in ms you do have periods like this in relapsing/remitting form.
ms effects the grey matter as well as white matter so they can have some symptoms like in pls.

before my dx my neuro did one last mri,he said he was sure it was not ms as that would be more general in terms to my symptoms. he felt it was more a specific region.
this is why even though pls is a mnd i feel it is very similar to ms.

my aunt had ms and was in a wheelchair in her 20's but before she died in her 50's she was walking great with a cane and seemed much better.

i know of many old time pls'ers who are doing great after 20+yrs.....................this is why i tell people not to worry too much if they seem like they are progressing quickly.
i have learnt to just take one day at a time:smile:

[Geo]

Paul ,only way to know for sure is have a Spinal Tap ,this is where MS shows Up . I have good and bad days ,but none where all symptoms leave . My bad days are worse because new symptoms show up, which scares me . As time goes on you learn how to cope with these new symptoms . Armchair geussing is all we have jL we are not getting any conclusive answers from the People that should know ,seems a shame to me ,these people went toCollege to learn this . You would think at least they would have the Guts to say "i'll look into that
But they dont answer to us ,their above us . Is this what higher Education does ,makes you a snob . Geo

[paul318]

I have thought I may have MS in the past. In fact I think that was suspected by the first neurologist I saw. I had 2 MRIs 2 1/2 years ago, which apparently showed nothing. I have also had 2 lumbar punctures which again showed nothing, the last one was in January 2008. MS seems to have been ruled out. The partial remissions I get are very short and as far as I know remissions in MS tend to last months or even years not a few days. I have wondered about primary progressive MS which is much more difficult to diagnose as the lesions are smaller. Unlike relapsing remitting MS it usually occurs in people over 40. and doesn't have remissions. I know that one of the reasons the neuros treat me with suspicion is because of these mini 'remissions. I always tell them they are not complete remissions, just an easing of some, mainly my gait problems. They never listen though.

I really am not trying to do armchair neurology. It is just that I am in limboland and I am trying to find out as much about things as possible. I'm just trying make some sense out of what is going wrong with my body. The neurologists have abandoned me so there is little choice other than asking others who have a diagnosis about their experiences. I do know enough to know that text book descriptions of disease do not always totally match up to patient experience, which is why I asked the question. As I said before I do not know what I have got. PLS is only a possibility and was mentioned to me by one doctor a couple of years ago. I know I cannot diagnose myself and neither can anyone on this forum.

My gait problems have started to return today. I am getting moments when my walking is bad, and others when it seems ok. I can feel the stiffness returning to my hands. Of course it is possible this is all in my head, but I don't think so. I made a video about the possible psychological reasons for my illness, some of you may find it interesting!! YouTube- They were right! It is all in my head! Please don't watch it if you dislike sarcasm

Paul

[Zaphoon]

Paul,

I am very similar to Caroline in her earlier days of PLS. Last summer, spasticity made it difficult for me to get out of bed in the morning. Fatigue was also problematic. The good medical folks did MRI's of my brain and spine to rule out MS, spinal tumors and such.

I have had improvements but never have been symptom free since this all began. I've had periods where my gate was bad and improved. My hip and thigh muscles still struggle in an effort to raise me from a seated position.

My neuro clearly sees that clinically, I've got UMN issues; hence, his differential of PLS. I believe there is a lot yet to be discovered regarding motor neuron disfunction.

Zaphoon

[Geo]

Paul i watched you on U Tube and noticed at first you seem to have an Ocular symptom ,where your eyelids and eyes seem to get stuck then went away then the left eye seem to stick a bit . Go back and watch it to see for yourself . Ocular Neuropathy along with Motor Neuropathy . Do you have any vision issues that you have noticed . You seem to be forming words OK . Mine would be alot slower . And Its not in your Head other than Neurons . Anyone who tells you this is coping out . Your Friend Geo /and your not armchairing Neurology .

[olly]

i noticed the eye drooping eye problem before and though of mg straight away.
paul i think you said you were tested for that?
sometimes these tests have a habit of not showing anything up,mg is very hard to dx.

i agree with geo,you are not doing armchair neurology. you are trying to fathom what the heck is going on with your body,which is clearly obvious in your videos.

my theory is neuro's rely too heavily on test results,if nothing shows up theres nothing wrong.........................that is bull!!! and what they really mean is"were not as smart as house to figure it out and can't be bothered":-x

paul it could be ms,mg.pls,mito desease or something else.
the intertwinning symptoms are spoken of as an umberella.
you could drive yourself mad trying to figure it out,i know.
untill some further progression happens or something new crops up to make the neuro's take notice,its waiting game.
some people can wait 10+yrs for a dx,if theres something wrong it will show itself sooner or later.

do what you can to make your life easier,eat well,sleep well and avoid stress.
do what you can when you can,pace yourself.
after 10yrs i am an expert.............trust aunty caroline,you know it makes sense;-):lol:
but dont go disapearing on us,we love having you here:smile:

[jl73]

Sorry, I wasn't implying that you were trying to do armchair diagnosing, just that it isn't a good idea to ruminate over what it *could be*. Spend your time thinking about more pleasant things...whatever your pursuits are. That's who seems to do the best, I've noticed. I know that's a tall order. I've come to the uneasy realization that we are all in the same boat-dying, either of old age or some disease or both. It's just that with a disease it is more difficult to deny.

[drvcolombo]

Hi Caroline,

My name is Victoria, and my Mom was diagnosed with PLS about a month ago. I read where you said, not to worry if your symptoms seem to be progressing quickly. At first it was my mother's memory, and just her hip that gave her a problem. THis was very diff. to diagnose. The doctors finally dx. PLS, but said they would re-evauate in 3 months. No she is using a walker and has great problems wtih her hands and arms too. My Mom complains of burning sensation in her hands and arms. She said her hands feel like they are on fire. What is this a sign of? She is extremely exhausted, and lacks energy. Obviously, her life has changed dramatically, in just a few weeks. She is on Lexapro, and has tremendous support of her husband, 4 daughters, and many friends. I know some people do not have anyone. Is there anything she can do for her hands? She takes Baclofen, has PT, goes for accupunture, and take holistic tea.

Paul, I hope are able to find a competent and caring doctor to take the time to help you find a diagnosis. To date, my Mom's doctor is not totally convinced of PLS, but he says this is his best dx. at this time.

I am not so good on the computer, and do not know how to respond to just one person. Hope you are all doing OK. I am encouraged and inspired by you all. I pray for all of you to do well. I am glad I found this site. Thank you for sharing your info and knowledge.

[paul318]

Geo and Caroline:

I have noticed the problems with my eyes. This is more prominent with my more recent videos and has been pointed out to me before. I am surprised none of the neuros have picked up on it. I do have some visual disturbances. As for my speech, that can vary a lot or though speech has become more problematic in recent months. Volume, stuttering, slurred speech and slow speech do occur. It gets worse the longer I speak.

jl73:

I do agree with your point. The problem is my symptoms impact every area of my life. No matter how much I try to ignore them or distract myself with things I enjoy they have a habit of reminding me they're there. I agree that having a diagnosis doesn't change things and that we are all going to die anyhow. But a diagnosis does help in other ways such as having some type of prognosis as to what is likely to happen, getting support from relevant patient groups and being able to claim on critical illness policies. Without a diagnosis it is impossible to get some of these things. I know that hanging around forums like this might be counter productive and no one can give me a diagnosis. But wondering what something could be, that affects every moment of your life, is only natural. It maybe that I should stop frequenting any of these forums. I feel very isolated. My family are wonderful, and supportive but they cannot understand what it is like to be so disabled. People on forums such as this one can understand what it is like and many here either are or have been in a situation similar to me. Sharing what is going on in your life can in itself be therapeutic.

Everyone else

Thank you for all your contributions to this thread. Knowing I am not alone is helpful.

My symptoms have returned to much the same as they were before they eased. I am hoping the downward spiral isn't too dramatic. I usually find I keep going down after these period of easing to a place where I am physically worse than before the symptoms ease. I'm trying to keep positive and keep things moving. I have contacted PALS which is a patient organisation that works in the UK's NHS service to try and resolve problems patients have with accessing care. I am not sure they can do much, but I have sent them a very long email explaining everything that has happened to me, particularly they way I was treated at The National Neurological Hospital in London. I am hoping they will advise me what my next course of action should be.

Paul

[olly]

drvcolombo.
how old is your mum?
from my 10yrs experience and contact with many pls'ers i found the early years with pls seem to be the hardest and most progressive.
this could be the initial impact of the desease on the body,yes it is progressive but in most this slows down to a steady pace.
long term use of baclofen and other meds also make things easier,yes i still have spasms,stiffness,myoclonus ect but its not as bad as when i first got ill (except for jaw spasms which are a newer addition in the past few years). i have been on baclofen for about 8-9yrs now.
my main problem now is weakness which no meds or pt can help.

as i have said before i know some who are newly dx in there 30's who are severly effected,then theres the old timers who have had it 20+yrs and are doing ok.

if your mum has been ill less than 3yrs then they can not say it is definatly pls,plus there is no sensory pain like burning with pls.
sensory pain is associated with neuropathy so her doctor is right to question the dx.
hopefully in her next evaluation they maybe able get a better picture as to what is wrong and if it is pls or not.


paul.
i totally understand your reasoning that is why i told you not to go running off.
here i get alot of support as i do my family but sometimes they dont understand,how can they?
plus you can discuss things you may not want to burden your loved ones with.

[drvcolombo]

Hello Caroline,

My Mom is 67. She was diagnosed about one month ago. Yes, the Dr. will re-evaluate and may change his dx. next visit. What is the burning sensation? She says it is extremely painful. She feels as if she has blisters on her hands, yet, they look totally normal. I do think the shock of it was devastating. Some days she is better than others. I understand that a positive attitude is helpful, and when you get hysterical adn cry, it makes you tense up ever more. We are trying. Thanks for responding.

Victoria

[jl73]

Hi,
I reread my post, and it comes off sounding wrong and discouraging. For me, I can spend way too much time trying to overthink whatever it is, wondering. I'm in a clinical trial, and don't know if I'm in the placebo ground or the active group, and it can drive one crazy. So I think that was my point. Also, I was told that yeah, you might never know what you have until you die, and then we'll figure it out. I agree, it's nice to know what might happen, uncertainty about the future drives me crazy, but a nurse said every time you step into a car, you don't know if you will step out, but people live quite well with that uncertainty. I've always said the hardest thing is accepting you have a lifelong illness, and the second hardest thing is once you really accept it, is not allowing yourself to become the illness. I type these things as I had 2 big leg muscle jerks, impossible to ignore. These kinds of illnesses are really overpowering and can take over a person's life, where it becomes the primary focus of one's thoughts.
And the part about everyone is dying, I like to think of it like this: no one's body is perfect-we age, but maybe some people's bodies are a little less perfect. So maybe put this way, more people could understand your problems.