Hello! 33 and neurologist thinks have PLS

[AKmom]

Out of curiosity, has your blood surgar been checked? Total guessing but I wonder if its neuropathy that is causing the loss of sensation?

 

[olly]

His nvc was ok joyce,i think with neuropathy it would show with an abnormal nvc reading.

 

[AKmom]

His nvc was ok joyce,i think with neuropathy it would show with an abnormal nvc reading.

oh...I missed that. I had some areas on the NVC that were poor activation or not activating at all and "they" (the wanna be doc at ma yo) called it normal, so go figure.

 

[Moonwolfy]

I am 35 and started having symptoms at 32. My onset was super fast. I had some weird muscle spasms and then within a few weeks I started walking really weird and my balance was off. I was given a walker. Then my speech started stuttering and within a few months was completely unintelligible. I was in grad school to become a therapist and my program would not let me continue due to speech issues. What was worse is the doctors did not believe that anything was wrong. Since all tests were normal they kept saying it was psychological that I was too young to have any series health problem. After two years of doctors saying either I was crazy or I was a medical mystery I found a neuro that actually was good and said it's PLS. I understand feeling like u r cut down in your prime. I been using a iPad with a speech app to communicate for over 2 years. I just started some meds and I been able to stutter some words here and there so I'm hopeful I will get my voice back somewhat in future. Just try to hang in there and be positive. I think everything happens for a reason. This experience has tested me beyond what I thought capable but has made me a stronger and better person for it..not weaker!

 

[olly]

Just try to hang in there and be positive. I think everything happens for a reason. This experience has tested me beyond what I thought capable but has made me a stronger and better person for it..not weaker!

well said and a 100% true.

you do have a fast progression but hopefully it has slowed down now.
I was 31,first 2yrs were the scariest but since then it has been very slow.............its about 14yrs now since onset.

Welcome to the forum moonwolfy

 

[Fedupbeingill]

Out of curiosity, has your blood surgar been checked? Total guessing but I wonder if its neuropathy that is causing the loss of sensation?

Blood sugar has not been checked. It was last checked when I started university about 8 years ago. I find it hard with the neurologist and doctors as the neurologist says its PLS but doesn't really go any further than that and my GP doesn't have a clue about neurology and says it's up to the neurologist. I don't see my neurologist again till April.

 

[Fedupbeingill]

I am 35 and started having symptoms at 32. My onset was super fast. I had some weird muscle spasms and then within a few weeks I started walking really weird and my balance was off. I was given a walker. Then my speech started stuttering and within a few months was completely unintelligible. I was in grad school to become a therapist and my program would not let me continue due to speech issues. What was worse is the doctors did not believe that anything was wrong. Since all tests were normal they kept saying it was psychological that I was too young to have any series health problem. After two years of doctors saying either I was crazy or I was a medical mystery I found a neuro that actually was good and said it's PLS. I understand feeling like u r cut down in your prime. I been using a iPad with a speech app to communicate for over 2 years. I just started some meds and I been able to stutter some words here and there so I'm hopeful I will get my voice back somewhat in future. Just try to hang in there and be positive. I think everything happens for a reason. This experience has tested me beyond what I thought capable but has made me a stronger and better person for it..not weaker!

When all my tests came back clear I started to worry people would think I was mad and just imagining it. Thankfully my neurologist kept telling me that though the tests were clear there was obviously something wrong.

 

[johnnyliverpool1]

thought your neuro said you had pls....and because he said that you say hes good......strange......pls is the rarest of the rare......odds are you aint got it..........lots to choose from yet....good luck, johnny

 

[Moonwolfy]

Olly,
Yeah it was a very fast progression that first year with the second year having a bit slower progression. I'm now trying different meds so hoping speech and walking will improve. Swallowing and breathing has already improved a lot recently,as my neuro was concerned I might need a Peg. So I'm grateful that the Peg can now wait.

 

[Moonwolfy]

When all my tests came back clear I started to worry people would think I was mad and just imagining it. Thankfully my neurologist kept telling me that though the tests were clear there was obviously something wrong.

I'm glad that doctors were compassionate and on your side. Dealing with the disease and not knowing what it is is stressful enough. People were stunned when they saw how I could not speak and walked weird that doctors thought I was perfectly fine. So for me I was worried every time I saw a new doctor that I was going to have to convince them that I wasn't crazy..lol.

 

[MISTRO]

Have you read or asked about HSP. Hereditary spastic Paraparesis. Its symptoms are similar to Pls but affects longest nerves. I read it tends to be younger people and can also cause sensory deficits which are not part of pls mechanism. My neuro suggested this for me but i am 52. I probably read this stuff at emedicine.medscape.com. You don't need a family history for the recessive genes to suddenly show up.

Be of good cheer.

Mike