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Hi there,
I really hope that there's someone who can help. I have to be honest and say that until yesterday I had never heard of PLS.
I'm afraid it a bit of a long winded story and I hope that you bear with me.

I am 47 and live in Australia. I have had so many tests during the past couple of years it's just not funny! Anyway, back to the beginning.

It started in my hand. I was tightening a drill bit one day and my fingers locked. I say locked rather than cramped but it's difficult to explain. Doctors look at me strange when I say locked. It only lasted a few seconds but when the muscles were put under strain again they locked / cramped repeatedly. Over time these muscle locks / cramps started to occur elsewhere in my body especially my legs. My feet would cramp when driving, my calves when walking...whenever the muscle was extended or stretched it just cramped. I could only walk short distances without my legs getting tired and I would hobble (that's the best word!) around. The pain and stiffness in my legs was (is) worse on a morning and late at night. I described it to the doctors as a lazy persons illness as it's not as bad if I sit around watching tv or not doing much...but it's extreme if I exert myself...like a battery that gets flat from use!
I have had arms full of blood tested...have had an ultrasound on my liver, an MRI,a muscle biospy, two muscle conductivity tests, visits with rheumatologists and now my third neurologist! In between all this there has been countless visits to my local gp...I am convinced that most of the doctors think that it's in my head!
I have a visit on the 14th of this month with a neurologist to get the results of the muscle biopsy.... According to the neurologists they have excluded MS, muscular dystrophy and MND as there's no muscle wastage or lack of strength.
Just to compound the story I have to add that there's something that has made things better. I mentioned to my gp that the symptoms were less severe when I was sick with a cold or flu...she latched on to auto immune diseases and prescribed predsolone which is an immune supressant and anti inflammatory. The solone takes away the stiffness and cramps, puts a spring in my step...but only for a while. The heavy legs, the aches behind the knees and the refusal (best way to put it) of the legs to listen to the brain to walk faster and become less heavy wears off on an evening and all the problems return. It also only works for a while before the dosage has to be increased and doesn't remove the cramps.
Anyway...do you reckon it's PLS?
All the tests are clear...I am the sickest well person around...sorry...I know how many people are suffering and to what extent but everything says that I am fine.

I would really appreciate any comments. I have to admit that I actually felt relieved to find something that fitted my signs and symptoms. Is it normal to go through such a long period of tests before PLS is diagnosed?

Thanks....

Shaun
 
Shaun,

A few of the hallmarks of PLS are pathological reflexes (hyperreflexia, Babinksi sign, Hoffman sign, jaw-jerk, etc...) spasticity, hypertonia and muscle spasms. (You didn't mention having any reflex issues.) Those are all signs of upper motor neuron dysfunction.

PLS is much, much more of a rarity than ALS, something like 1 in 10 million or so (depending on who's statistical data you want to believe).

Odds are, you don't have PLS and yes, it usually takes a few years for a diagnosis of PLS, according to all I've read on it. It's usually a provisional diagnosis for 3 years once it is suspected.
 
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Some docs are hesitant to diagnose for PLS because it sometimes becomes full blown ALS over time. Also; at least in the US, ALS diagnosis will get you disability while PLS is more debateable with the deciders in our systems.
 
It is hard to say. Did your doctor note spasticity or reflex changes? Have they tested you for Lyme's? Ultimately, you sound like you are at the stage where you have to learn to live with "it", whatever it is. They can't cure what they can't find. Let us know if we can help you with that.

There was a guy diagnosed with HSP who posted on Carecure, asking if anyone else with HSP/PLS had any relief from antibiotics. No on else shared his experience. Perhaps in the long run they will find a different spastic/cramp/weakness disease which the two of you share?
 
Hi Shaun,
Welcome to the forum.

I am just down the road from you.

I agree with Zaphoon re tests etc.

In my case I had "slowness" in left hand first up, probably 3 years before ALS diagnosis.
I have no pain and only get a cramp, say once a week lasting only a moment or two.

Cheers
Peter
 
hi shaun (my sons name and same spelling)
could you give us any info on your neuro exam?as to reflexes?
do you have any balance issues? you did not mention this but it is a very prominant symptom in pls.
i do get cramp in my feet and calfs,mainly left where i have more clinical weakness and zaphoon is the king of cramps.
i do understand,i am very stiff on a morning and i do find the more you push the stiffer and slower you get.
my first symptom that others noticed was clumsiness,dropping things far too ofton and balance problems then i developed spasms and stiffness and then dragging my left foot .............several months later on my first neuro appointment he detected clinical weakness(though weakness can progress over many years with pls)
looking at research stuff lately i have found so many things that can cause symptoms like in pls,that is why the reflex tests are so important.
with abnormal reflexes they can narrow it down to deseases that can effect the umn's,with mri's,blood tests and genetic testing they then can find the diagnosis or everything comes back ok and there only left with hsp or pls.
hsp effects mainly the waist down were as pls effects all the body.
take good care
caroline
 
Hi there,
Thank you ever so much for taking the time and effort to respond. I really do appreciate it. The info that you have provided seems to indicate that's it's something else (who knows what!) especially the reflex issues indicating that it is not PLS.
I will just have to see what the neurologist says on the 14th but I don't really expect a result.
Thanks
Shaun
 
You all give me hope that my LMN signs are only in my arms are something related to my neck--because if so--everything else fits PLS. My ALS neuro noted both UMN and LMN--but didn't really specify which area were LMN--I know the only areas that do the fasciculations are my hands where the atrophy is.

I would so much rather hear that I had PLS rather than the ALS she suspects. Ya all wish me good luck and that she finds the bilateral hand atrophy is from my neck! That'll leave me some hope of not ALS. I keep reciting Zaphoon's comment "It can only be ALS when it can't be anything else" line to myself.

Shaun, I get the same hand cramps you mention--my daughter has actually had to take my hand and move it--it simply locks in weird exceedingly positions with my fingers almost like claws at their worst.

The baclofen has helped--I don't think I've had one of the hand mega-cramps since I started it. I've never noted any improvement on prednisone, though--I've had to take it numerous times due to my asthma.

Shaun--don't be surprised if they can't figure you out quickly. The hand issues with me are within the last year--but the leg issues are ongoing for several years. Perhaps the fact that prednisone makes you better does mean perhaps something auto-immune. I think most auto-immune things are at least treatable.
 
hi shaun.
i take it your neuro exam with regards to reflexes ect was ok?
did the rehumatologists do the examination test for fibromyalgia?
fibro is very good at mimicking pls with its symptoms and they can only tell the difference by doing a physical exam.
you should see a rehumatologist again for a second opinion on fibromyalgia.
you can find lots of info on the web,would post some but it would go to moderation.
by the way the locking hands thing may be something called trigger finger,it can happen with other joints also.

let us know how your appointment goes.
take care.
caroline.
 
Hi,
Thanks for the comments. I appreciate your feedback.
The rheumotolgy professor didn't do the pressure point test for fibromyalgia. He didn't mention fibro at all!Before my visits there were glowing reports from the other doctors about how good he was so go fugure! I guess that in some way i'm the victim of the state health system which is a godsend when you are a low income earner but tortourously slow and unpredictable. The prof scheduled loads of tests but because they were negative he shook my hand, gave me a script for predisolone, said he doesn't know what's wrong and sent me on my way. I limped and shuffled to the car and was driven home in tears...the sickest, well person I know! If the neoro visit has the same result I just don't know...and this is the third neoro...he's sent the muscle biopsy for "left of field tests" whatever that means.

I think that it's the not knowing and the medical doubters that is so difficult to deal with especially when it goes on for years and the pain, cramps, fatigue and quality of life is so bad.

Shaun
 
Shaun,

The hallmark for diagnosis Fibro is pain above and below the waist that lasts at least 3 months. The pain can be felt usually near joints--so, we kind of feel 'stiff and sore'. It's actually not the joints--it's where the muscles connect to the tendons that is hurting. Being tired, less energy, poor sleep are all part and parcel for fibro
 
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