Old 01-29-2012, 06:49 PM #1 (permalink)
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Default not good. im scared.

Hi all. This is hard for me...its scary to realise that I may have pls. Im still in denial that something is wrong...i only have mild issues with walking, its not that bad.

I suspected a problem but hoped it was in my head, i could not believe i would have a problem as im only 24 years old. Im a new mummy and have spent the last year devoting my time and energy to my baby.

I've been seen by a neurologist who has told me that i have a progressive condition involving my brain and spinal cord. I did not understand some medical jargon but he found many abnormal signs including spasticity in my legs and its starting in my hands....weakness in my feet and hands. Deformities in my feet, i believe it is called a spastic equinovarus deformity. He found that i have ataxia and my pupils are different sizes too. I also have problems with lack of sensation in my toes.

In my teenage years i started to get clumsy and was terrible at sports. My feet started getting slowly deformed and weaker to the point that it has been hard to get shoes to fit and i cannot wear high heels. I started getting restless legs and cramps..i noticed how weak i felt and how i felt so umbalenced. I even have a weird symptom which i didn't mention to my neurologist...some time in my teens my smile got wonkey, it has stayed slightly wonkey since then has caused slight asymmetry in my face. My vision got worse, going from perfect to short sighted. People made comments as my feet stomped very loudly when i wear certain shoes

Current symptoms:
Spasticity
Weakness
Curled toes and spastic equinovarus feet
Tiredness
Crooked smile
Cold feet
Impossible to wear high heels
Poor posture..struggle to stand up straight
Lose my balence and fall to the side
Mild cramps
Awkward gait
Get tired quickly and cant walk far
Difficulty running
Very thin feet and lower legs
Poor eyesight
Numb toes
Pins and needles
Weak ankles
Pain in hands when they touch something cold
My muscles are very stiff if they get cold
I cant excersize as my muscles are tight and crampy
Mild muscle twiches...could be due to antidepressants.
Go through phases where i drop everything and i cant explain why
Depression
Terrible with using my hands.
weird vision...flashing lights in my eyes and jumpy vision...like I cant see for a second, it goes blurry.

Any of this sound like pls.? Im being tested for hsp and inherited ataxia and they will send me for a scan...presumably to look for lesions etc. My cousin got diagnosed with progressive ms at a young age and she has similar symptoms.


This is very hard. I've gone through post natal depression and anxiety and now this.
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Old 01-29-2012, 08:36 PM #2 (permalink)
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Default Re: not good. im scared.

Mummy 24, have you had PLS confirmed by your neurologist? Only some of your symptoms point to pls and you are way too young for the normal age of onset, which is most common in the 5th decade. Also pls does not usually cause sensory issues. It maybe could be progressive Ms, which can be hard to diagnose.
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Old 01-30-2012, 10:43 AM #3 (permalink)
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Default Re: not good. im scared.

Hi, no my neurologist never mentioned pls...he thinks it could be hsp. I've heard that hsp and pls can be very similar and since I cant find any family history of hsp or anything similar, I presume that pls could be a possibility.

I know my condition may be hard to diagnose but im so worried as if it is hsp, there is a chance i could have passed this on to my daughter...this is making me feel anxious, as any parent would be.

Before I went to the neurologist I did expect that there was something wrong, but at the same point I didn't want to believe it. I never had a clue about spasticity although now I understand why my feet keep turning in very badly. I assumed I had something called charcot Marie tooth disease as my foot deformity looks like a classic CMT foot, but I know cmt doesnt cause the spastic paraplegia.

Im doubtful that I will get a diagnoses any time soon. I've read a bit online and im confused about my symptoms.

I am sure enough that it isn't ALS as my progression has been very slow, started in my early teens and im still able to walk without assistance.

It could well be primary progressive ms...but I cant find anything much about my foot deformity being common in ppms...my feet have high arches, twisted in ankles, very thin, curled up big does and they turn in and point down
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Old 01-30-2012, 12:21 PM #4 (permalink)
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Default Re: not good. im scared.

i just get blurry vision.. am not depressed in the least... pins and needles , no....but something similar i cant describe...the rest of yr list is all familiar to me.................i will be interested how u get on in the next few months...good luck...johnny
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Old 02-01-2012, 09:22 AM #5 (permalink)
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Default Re: not good. im scared.

it is scary to have so many symptoms and few answers. And it is scary to have a new baby. It is wonderful you've been able to devote your time and energy to your baby under these circumstances. Babies can at times be a bright spot in a dark time. I find that these health problems can put people in a helpless situation...babies however are the best place where you have control. Your efforts will pay off down the road in your child's life. Continue to seek support for yourself, your symptoms in any way possible, to make you as strong a parent as is possible. and know you are not alone.
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Old 02-01-2012, 11:33 AM #6 (permalink)
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Default Re: not good. im scared.

Also, sounds like it could be both Charcot Marie tooth and another disorder either MS, HSP or Pls. I have seen CMT and some of your symptoms sound like it.
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Old 02-01-2012, 12:12 PM #7 (permalink)
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Default Re: not good. im scared.

Your comments about being clumsy in your teenage years is classic of someone with a hereditary disorder like CMT or HSP. You should have had an EMG to rule out sensory neuropathies.
I have feet the same as yours and spasticity. They are not sure that I have pls, but my EMG at the moment does not point to any LMN involvement, or hereditary sensory neuropathy. HSP is still in the differential, I think.
I can tell you that with 99% certainty you do not have pls. The picture does not even start to fit. You can breath a sigh of relief as it is a worse prognosis than the others, as it has bulbar effects in 100 % of cases eventually.
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Old 02-01-2012, 10:02 PM #8 (permalink)
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Default Re: not good. im scared.

I was wondering about CMT as well (Charcot-Marie Tooth). Mummy listen to Aly--she is a great resource with lots of experience.
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Old 02-02-2012, 01:52 AM #9 (permalink)
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Default Re: not good. im scared.

Dear Mummy, first thing is you need to relax and enjoy your beautiful gift you have. Second, many people, including myself have unknowingly passed on a faulty gene to our children. I just recently found out about mine; for me it's basically too late. But now with all the different DNA/Gene studies going on, my children and grandchildren may not suffer. Thirdly, RELAX, I know that is going to be hard, but please do that and go back to number 1. Let the doctors figure it out and enjoy today, tomorrow and every day after that.
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Old 02-02-2012, 06:19 PM #10 (permalink)
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Default Re: not good. im scared.

Twenty Four is way too young to have this problem. I was diagnosed with PLS at the age of 71--still not sure it is the correct diagnosis but fits better than anything else. I share about 90% of your symptoms. Some of them come and go.

It is my belief that PLS can be triggered by some sort of trauma. This is a personal observation--not a medical fact. Having a baby, although perfectly natural, takes a toll on the body--usually temporary.

I was a klutz as a young person and have had mild symptoms for years (I now realize) but nothing I couldn't overcome or compensate for until now. I'm going to be optomistic and think you may get better and hold off major problems until you are much older.
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