hemiplegic pls

[olly]

hello everyone.
sorry i have not been about for a week or two,alot been going on.
i had my neuro appointment last week,it was with another neuro as mine of 11yrs has retired.

when i first got ill on odd occasions i temporarily numb weakness down my left hand side of the body lasting days to a couple of weeks.
this was one symptom that made them think it could have been ms.
it happened 4 times during the first 2yrs then several years later.
last week it happened again the day before my appointment and i told the neuro.
well,he told me it was hemiplegia and rarely it does happen in pls and its probabley why i have hypotonia in my left lower leg.
i was flabbergasted,my neuro would never give me a reason for the hypotonia or the hemiplegia.
i am so happy i have learned this,i know you all understand how much better you feel when you get an explanation.
i looked it up on the computer not expecting to find anything but did,here is an article.
also i mentioned about my cognitive problems which he said was associated with the disease process.

Mills' syndrome: ascending (or descending) progressive hemiplegia: a hemiplegic form of primary lateral sclerosis?[/url

http://www.pagepress.org/journals/index.php/ni/article/view/ni.2009.e15/1779

http://www.ncbi.nlm.nih.gov/pubmed/17404520

on a sad note,my brothers motherinlaw has been battling brain cancer for the past 2yrs.
she had a tumour removed and chemo but this time last year they said it had come back and could not do anything.
she has done so well this past year but took a turn for the worse and was admitted into the hospice some days ago.
i am going to see her at the weekend with my mum.
i used to work with her and her daughter worked next door,my brother used to call in my work and eventually got together with claire.
my brother and claire have one son aaron,he is very close to his grandma and it will be so hard on him.

i hope you are all as well as you can be.
take good care.
caroline

 

[olly]

sorry problem with links,try again.
Mills? syndrome: a case report | de Gobbi Porto | Neurology International
[Mills' syndrome: a rare clinical entity] [Rev Neurol (Paris). 2007] - PubMed result
Mills' syndrome: ascending (or descending) progressive hemiplegia: a hemiplegic form of primary lateral sclerosis?
Mills' syndrome: ascending (or descending) progressive hemiplegia: a hemiplegic form of primary lateral sclerosis?

 

[SpringOwl]

Hi Olly,

When I went to my ALS clinic this summer for my first emg, the dr. Said I may have hemipeligic (sp?) because my weakness is one sided and my emg showed no abnormalities.

I didn't believe the diagnosis because I have left sided atrophy and loads of fasciculations. I don't know what hypotonia is.
Always great to get answers!

Amy

 

[johnnyliverpool]

bout time use got back in the fold oll........absence makes the heart grow fonder..dont mess us about again olly...............................or else!...johnny

 

[olly]

hi springowl.
the pls is global as is my weakness but my left side is weaker with hypotonia in that leg..........hypotonia is flaccidity or loss of contraction.
the neurological episodes i mentioned feel like i have had a small stroke,except for the first time i had one i always wake up with this and it stays at its worst for a few weeks.
the first time it happened was about 5months after the spasms started,i was under a rehumi at the time.
i was out with a friend in town and i realised my left lower leg had sort of gone to sleep and i was dragging it,as the day went on it spread upwards to effect the whole of my left hand side and stayed like that for a few weeks.
i think that first time is what caused the hypotonia in my left leg.
this prompted my gp to get me an emergency appointment with neuro.

i had read an acute severe umn lesion can cause weakness like this.
i dont really have true hemiplegic pls,the pls effects everywhere but for some reason the left hand side is getting a rougher deal.

johnny my old mucker,how are you?
sorry these last few weeks its been one thing after another,you know how life gets sometimes.

lynn my brothers motherinlaw is unconcious most of the time now so its only a matter of days.
we were going to see her but claire phoned today and said even when she is awake she can not remember anyone.
my mum said she saw lynn in town 2wks ago and she was her usual cheerfull self,her speech and walking had been effected for the past year.

it makes you feel very lucky even to have pls.

 

[johnnyliverpool]

spring owl...i remember reading an article on the net which listed approx 40 people and their pls symptoms...and with only an odd exception..they all listed left arm and leg or right arm and leg weakness...why? ..i dunno!...anyone got an explanation?.......johnnythick..

 

[AKmom]

Olly its good to see a post from you! I was wondering how things were going with you and with Beky since you both seem to not be around lately. Glad you are getting some answers.

So sorry to hear about your bro's mil. Its always a tough time for all when a loved one is close to crossing over. My prayers are with all involved.

I read the articles you posted. I had started 20 years ago with just weakness and gait change in my right leg. Most anyone would say to me is I must be depressed. That would really make me mad because I wasn't depressed..I was angry at loosing abilities to run and kick a soccer ball. It has progressed through the years and only a year ago (after seeing over 10 different neurologist plus quite a few other specialists) that finally one mentions the pls and when I looked it up it was like reading my whole story online! As for the Mills syndrome..I am not quite understanding. Are they saying that it IS pls? Or that it usually runs as a secondary to als or pls or ms or some other condition?

Back in 04 I had TIA's (mini strokes) that ultimately led to a small full blown stoke that shows on the mri. But I have regained most all of what I lost I think. Seems that shortly after that though...my left side was doing what my right leg had done. And now it progressed to upper limbs including muscle wasting noted in my left thumb muscle (I am ambedextious but use my left to write) and also in my shoulders. This is a new change since this summer. I also have muscle twitching and bulbar symtoms. I am thinking it might be time to go back to the neuro doc and get a new emg since the first one was good. Although the thought of having the test done again does not appeal to me.

Anyway, Olly I wish the best for you and that you can get the help you need. I certainly can understand how frustrating you must be with things happening like they are. Hang in there!

 

[johnnyliverpool]

joyce, a soccer player eh?..at a guess, you was a flying winger, left footed with an eye for goal...my legs were the first to go spoiling my soccer days.........johnnywishiwasstillplaying

 

[Tokahfang]

I am in week 4 of not being able to get enough calories through the system (get to see a doc on Tuesday about that) and recovering from strep throat. My fighting spirit is not so fighting this month, and my hands are contracting which has set back my computer use until they settle. I am sorry not to type so much, I hope you all are well.

 

[AKmom]

actually Johnny, I coached 28 different teams in 16 years. And that was just the soccer. I also coached basketball and little league. Every youth age group all the way up to sr. high schools teams and special olympics grown ups. Led quite a few to championships. But I would practice with them. I would demonstrate technicques as well as run the 1 mile lap with them at the end of each practice. I had even coached when I could no longer kick a ball or run...used some students that were on my teams for years as team captains who would teach the new players. But coaching became more and more difficult as I could not remember names of players if I got stressed and I would fall on the sideline if the ground was uneven and I was pacing while watching the game. Most of all I missed playing against the kids when we did scrimmages during practice. Just took the fun out of it!

Beky I am sorry to hear your having such a rough go of it. I do pray that you get feeling better and they can figure out how to get those calories in you. Let us know how things go with the doc if you can.

 

[olly]

hi joyce.
the last article states mills syndrome can be caused by other neurological deseases and could be a variant of pls in were only umn signs are present.
i think the variant of pls would involve one side after re reading the article.
i am a bit confused again now but it seems probable that my left side (spinal pyramidal tracts)are degenerating more than the right side, though both sides are effected by pls.
i had thought about tia,s.................does what i describe sound like them?


beky.
cake,pud,cake.pud,cake..............in any order.
i know how it feels,i am battling to keep weight on by eating high calorie fattening foods............to loose any more pounds would put me in the anorexia zone.
about your hands i also understand,i think joyce is the same with hers.
any prolonged use sends them stiff and painfull with spasms and you can not use them at all..........i say them but its usual my right hand as i am right handed.
it takes away enjoyment..........can not do my embroidery anymore, can only use my ds for half an hour.
hope you feel better and a bit happier becky.

 

[AKmom]

olly if I describe my tia's to you it would be better if you decide they are simular or not. My first tia happend to me after a long flight down to Idaho. My mom picked me up from the airport and we went directly to an all you can eat buffett that she likes. I had gotten my plate of food and my papa and I were in a discussion about somehting while waiting for the others to finish getting their food. All the sudden while I was talking...the whole right side of my face disappeared. There was no hearing or site, I lost track of the conversation and there was a long pull as it were...a dizziness that I can only describe as the feeling you get when you are being put under anisthesia for an operation. I thought I would pass out. But I could hear clear as a bell to things in the restraunt with my left ear. I had closed my left eye when the dizziness started. I distincly remember the though of "Not now!" as I had my lil dd with me and she needed me still. Then just as fast as it came it was over. I was confused on what I was talking in my conversation. My mom arrived back to the table...nothing was said by papa. I debated on whether I should say something or not. I decided not because I didn't want to go to the er. So I waited to see. I did end up having a migraine for a day and a half after that.

Then the next time it happened was a few weeks later I was at church. I was talking with someone and my right eye and ear started to go dead. I say started because the vision only browned out and the ear went very dim but not completely out. I had stopped in my track on the conversation and totally forgot what we were talking about. It was only a hicup in time length.

A couple months down the road from that time I was sitting up in my bed watching some tv. The right leg went completely dead! No warning...just it was totally gone. I rubbed it, pinched it, hit it and tried to move it to no avail. Nothing...nada. Paniced I yelled for my hubby. Then just as quickly it came it left. That was about 2 minutes of not having a leg. It only happened one other time after that but it included both legs and a partail arm on the right. Lasted only a few minutes. I had mention each of these events to my doc of that time. (he is no longer my doc for obvious reasons...he ignored my telling him these things and then I had a complete stroke that was ignored by him too). I would have dizzy episodes that would make me forget what I was saying..they would last only a few seconds but happened frequently. The doc of that time would give me antidizzy pills to take that would cause me to be sleeping. After a couple days of taking them I stopped. Didn't see the point if they were not taking the dizziness away and were just making me sleepy.

So then the day I woke up and knew I had a stroke. I had gone to bed as always. Muscles tight and spastic and just unbarrable pain in my legs that I had attributed to restless leg syndrome. I had taken ambien to get to sleep and a tizanidine. When I woke, the first thought was , wow! no pain! I thanked the Lord for such a blessing as it had been years that I was ever pain free. I opened my eyes which felt heavy...like I was waking up from a deep sleep caused from anithesia. Again I praised the Lord that I must have slept well. It was already light out and my hubby was not in bed. I am a habitual riser at 7am or earlier. I looked at the time and it was 930am! I was shocked! Church would start in an hour and I needed a shower and to get everyone ready to go!

But for the life of me I felt so weak and sleepy. I lay there battling off the sleepy feeling. So I pushed myself to the edge of the waterbed. Thats right I slept on a waterbed and the mattress was an old kind where it was a bag of water in a wood box frame. I struggled to roll onto my left side so I could swing my right leg off the bed. My right side had been weak for a couple years now for unknown reasons (at that time) and I depended on my left to get me there. But now I could not for the life of me push my body up with my left side! I did a faceplant into the wood frame as gravity and enersia took over and pulled the rest of my body over the edge of the bed and I landed on the floor. Puzzled I tried to get up my my left side was so weak. I shift my focus over to the right side to do most of the work. Once I got to a stand I faced to direct path to the bathroom ...2 steps and I run into one wall on the left. Another 3 or 4 steps I again on the left run into the bathroom door frame. At this point the thought of stroke enters my mind.

But as things would have it...we didn't have health insurance and hubby's company was struggling so much that he wasnt making a paycheck so we were living day by day on funds that we had stored all the years for retirement. I didn' t want to go to the er and have all the expensive test done only to be told either 1: yes you had a stroke so now you will have to go to physical therapy that will cost....(you get the point) or 2: we cannot find anything and think you should go home and get some rest...that will be 1000 dollars please.

So I went on about my day. But by the end of the day I knew I needed to see a doctor. I was seriously forgetting words. I was wanting to sleep all the time. I couldn't get into the truck without a seriouly boost from behind. I could no longer open a door with my left hand. I kept running into walls. So on monday Iwent to see the regular doc but got his wanna be doc intead (PA) and basically my symptoms were dismissed even though I could not stand with my eyes closed without falling over and when I lift both arms ....the left one would sink to the floor. And after years of hyper reflexes...there was absolutely non in the left...including the arm too.

So I did my own physical therapy. Being a coach its common sense. I had lost about 75 pounds during that time and frustrated I might have been about the missing words I would have...that eventually improved although I still miss a word now and them. When hubbies company finances improved we got new insurance and i guess its was a blessing that it was never diagnosed as a stroke because the insurance company would have denied me coverage (there was no law at that time). So I started seeing a new doc who is still my doc. His first visit I told him the story because he was finding things that looked like neurological problems. He sent me to get an mri and sure enough...there was the stroke. I have had a few tia's after the stroke but nothing as serious as the first ones.
I really do feel that the left side had strengthend up pretty good with the weight training and physical therapy I had worked on. However the past year or so I have seen a decline much related to the right side weakness and spaticiy that I have had for 20+ years. So now its the pls that is first and formost the thing to beat in my mind! Can't take the competitiveness out of this coach!

 

[olly]

joyce,thankyou for explaining all that.
as i said except for the first time i have always woken up with the left sided weakness,like you said it feels like i can not feel that side including my face but if i touch my left hand side i do have feeling.
but it is very noticable weakness when it happens.
funny thing you mentioning about the speech suddenly going,that happened to me once when i felt ill while out...........i tried to say something and it came out all gobblediegook.

we seem very much alike with the stroke like episodes,odd siezures ect.

forgot to mention like you i also had a few of these episodes some years before pls onset..........very strange

 

[Tokahfang]

My diet is still slightly more than pudding, my church got me a vitamix and I can eat many foods liquified, as well as mac n cheese with half the mac thrown out. The problem is my stomach... I eat one bowl of high calorie food.... say mac n cheese made with Benecalorie for 850 calories. Then if I eat anything else or even drink too much, I am nauseous as all get up and reflux full mouthfuls. Some days I manage a smaller meal about 10 hours later, some days I don't. I have had a hiatal hernia since age 13-15 (got the symptoms at 13, endoscopy at 15), and it might have gotten worse or complicated. Some people with mnd get some vagus nerve damage and low gastric motility, it could be that. I see a gastro on Tuesday to sort it out. After over 10 months of little hunger and less and less food options for my swallow, my self discipline isn't up to overcoming nausea, reflux, and vomiting for food I don't desire or enjoy much. I made it 10 months making my calories every day... it's just so hard now. I'm hoping they have a drug or surgery or option to make it better.

 

[olly]

hi beky .
i started with stomach problems a year ago,untill then never had any.
i get constant upper gastric pain and sometimes burning ,the pain can have me doubled up when its bad.
lost so much weight since stomach problems started despite trying to eat as normal and increase calories,though i do get days when i just dont have any appetite.
thought i had a sore throat infection some weeks back but gp said it was gerd.
i take omeprazole (20mg an hour before a meal)for acid.............domperidone (30mg x3 a day before meals)to aid gastric emptying..........and buscopan(10mg x3 a day) for gastric spasms.
if i remember to take them all regular they do help,sometimes i forget to take the ones i need before meals.
i need one of those pill boxes to remind me to take everything in my long list of meds lol.
dont know why all this has started but i do know like you said some neuro deseases can effect the nerves to your stomach.



on another note...........i thought i had seen the light but now i am more confused as ever with all this left sided weakness episodes ect ect ect.
you feel comfortable of sorts with everything then something comes along to rock the boat and turns things upside down.
so i think its best to except the overall diagnosed and think of the other things as additional little pests.
as my old neuro said, nothing is certain till autopsy with things like pls/mnd.


sadly lynn my brothers mil and old work friend of mine passed away on monday morning in hospice, 2yrs after diagnosed with brain cancer.
this time last year they said there was nothing more they could do and gave her a few months.
we are thankfull she lived for so long and was doing quite well and active considering till 2wks ago then thankfully it ended quickly.
her funeral is next wednesday and my parents are taking me.

take good care everyone.
caroline