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prometheus

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I am a little confused about two appointments that I just had last week. My primary neurologist gave me a "probable PLS" diagnosis, and the neurologist that he sent me to for a 2nd opinion gave me a "probable HSP" diagnosis. I know these two diseases may have similar symptoms, but they have two different causes right? The 2nd opinion neuro said that I appear to have a complicated form of HSP, which simply means that it is HSP+ some other symptoms not typically related to HSP (in my case it would be peripheral neuropathy). He said he doesn't think it is PLS because PLS usually includes bulbar symptoms, which I don't have. My primary neuro said that he doesn't think it is HSP, because HSP doesn't affect the arms and I have some arm spasticity and weakness (albeit very slight). So what gives? I told my primary neuro that the the MD he sent me to for a 2nd opinion thinks that PLS is unlikely and that he said that in the complicated form there may be symptoms like mine, and he said he would have to wait a few years for one of the to to be ruled out, but that he thinks it is PLS. At least we have narrowed it down to a spinal disease I guess.
 

Geo

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You also want to look at Toxic Neuropathies . HSP is Heredity Spastic Paralegia Heredity This is what someone else in your family had ,thats the word Heredity . If you dont have the Genetic Marker , would say No . alot of the same symptoms ? How Long ? Have you had this ?. The Bulbar issues in PLS mostly comes After The Legs But sometimes Bulbar First ,Not always .Until they Come up with a Comprehensive and Conclusive test ,the Geussing will go on . Upper Motor Neuron is not Spinal in the Sense its Purely Upper Motor Problems which end up causing the Lower Issues ,as the Signal doesnt get there right .Spinal Neurons are the Lower Motor Neurons ,Upper are the ones in the Motor Cortex .First Order Neurons . Alot of People who have PLS have been misdignosed as HSP and this is why They have a mutual Web Site . Geo
 

prometheus

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Heriditary Conditions

Thanks Geo,

The issue of HSP has been an interesting topic of discussion with both neuros. paternal Great-Grandfather and maternal great-great-grandmother both had neurological symptoms that mirror my own.

The problem, according to both neuros, is that my GGrandfather did not have access to good health care (He was Basque and lived in a small fishing village outside of Bilbao, Spain). Even if they were able to get him to a good doctor, genetic testing would not have been around. He died at 106 of a "bite" (I'm not sure what kind of bite). He developed his condition while in his early 50s and lived a long time with it, although severely crippled.

My GGGrandmother lived in the US, but according to my neuros, she pre-dated the discovery of HSP (she died in 1873). Her symptoms, as described to me by our family genealogist, were stiff legs, loss of feeling in her legs, poor balance and a slight (but functional) mental retardation that manifested itself after the onset of her disease.

My 2nd neuro says that some forms of complicated HSP can cause mental retardation. He also said that HSP does not always show up in every generation and often times skips several generations and well as being sporadic in some cases with no known family history. I asked about genetic testing and he said that it can confirm HSP but not rule it out as less than half of the genes causing the 30+ variations of HSP have been identified. My insurance does cover it so we have ordered a blood test which I had performed on Friday.

I have had my symptoms for less than a year, which I believe would be too soon to rule out just about anything as things can change dramatically over the next 2 years. Both were open to each other's diagnosis, which is why they both gave probably diagnoses rather than a true diagnosis.

My primary neuro also thinks that my family has a history of whatever I have, but he thinks that it could also be PLS and thinks it the more likely (unless it develops LMN symptoms then we have ALS). Apparently PLS could be genetic in some cases? That's what he said at least.

Maybe I need to find a neuro outside of the Kaiser Permanente Network. I think if I ask for one they are supposed to refer me to one. or at least I can ask for a referral to a specialist.

What was that website that you mentioned? The mutual website.
 

Geo

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spffoundation.org ? Or google it Spastic Paralegia Foundation
 

Geo

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My Mom had some sort of Dementia at age 82 ,her mother had also some sort of Neurological issues ,but they didnt talk about these issues ,one they had no health care (couldnt afford it)two it was considered not polite to ask your grandma why she acts the way she does. Like why does grandma laugh alot for no reason? . Or why is grandpa in bed alot ? Lots of Skeletons in the closet they didnt want out . Geo
 

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Isn't that funny how the older generations simply wouldn't talk about it? I'm running into that as well. It sure would help if they did. I'm resolved to document everything I can so that my descendants can have something to draw from should they come down with something.

I think another reason why my 2nd neuro is leaning toward HSP is that it makes more sense from a mathematical standpoint. PLS is extremely rare so the odds of seeing someone with it are slim. Then considering that I'm only 35, have lower extremity onset and no bulbar symptoms... I think he's playing a number's game. HSP is more common, typically hits in the 2nd -4th decade of life, starts in the lower extremities and does not have bulbar malfunction. I think I see his reasoning. I suppose as long as he doesn't close his mind to PLS/ALS then it shouldn't matter to me. My understanding is that they treat them both the same. Is that true?
 

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i think they both are more or less spot on with what they told you, hsp can be tested for but can skip generations but only about half of the genes can be tested for at present, hsp can have minor arm involvement but pls would tend to have bulbar symptoms. very very rarly you can have hereditory pls, i suppose it's a wait and see situation for bulbar symptoms to develop. some people get a diagnosed of one then changed to another years later.
caroline
 

prometheus

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Thanks Olly. I suppose I haven't learned to play the game yet. I really want a diagnosed right now and when I keep hearing different information and them telling me to wait for a few years... well, I just get frustrated with the whole thing. I can see how they both make sense and can be confused.
 

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i went to see a mnd neuro last week and still no definate diagnosed after 8yrs, i have all the signs/symptoms of pls including bulbar ones now, my neuro said he thinks it's some kind of spastic paralysis. but the neuro last week said he wont diagnosed pls as mri is normal, yet nords, other neuros in usa and plsers all say mri's are normal in pls.
i know a diagnosed will come either during life or on autopsy, my main concern is dealing with/treating symptoms now iv'e gone past caring about a definate diagnosed. i just hope some of these morans iv'e seen, especially him last week have good lawyers because theyll need them .
caroline
 

Geo

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As Ive said before the geussing will go on .My MRI,s Have all been normal EMGs also etc etc I mean 100 years plus now come on People . If you and i did our jobs this way we would be fired MY friend . The Problem is The Politicians and Drug Companies run the Show Here ,anybody see the Problem with that
Duh I wander how much Pork has to change hands to get the job done ,We have Rich Farmers who are Paid to not work . HMMMMM im wandering is something wrong with this Picture ? .I think we use to call this Priorities HMMMMM $$$$$$$$$$$$$ . Can you Imagine some Person who knows theres a cure But MONEY
How Many Dollars can I get ? .I was never raised this way and i couldnt sleep knowing someone would die tonight ,But i'll get richer . Cant Imagine someone so EVIL . We all want a deffinate Diagnoses ,its no fun living in Limbo . But it beats Dieing and i thank God for eveyday i get . Geo
 

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It seems funny to me also My kids know if im constipated . My Daughter and i share things as we are alike
she gets alot of the things i did get . i love to share . My life is an open book i have nothing to hide .Those who cant share there feelings live in a small world . Geo
 

olly

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that final thought is what my son would say"too much information" lol
you are what we brits call"a case and a half" geo:lol:
i personally think there is a conspiracey goning on with the neuro's in my area.
every pls'er and some pals say mri's are normal, lindag from spf foundation who has pls said only on a very odd occasion does it show up in mri, spf published a booklet through nords saying this and was distributed to 14,000 neuro's in 450 clinics.
but this neuro last week said that was wrong and more or less called me a flat out lier.
iv,e been thinking of writing a letter to the hospital board of directors and local mp, to make a complaint about the shocking way i am bieng treated.
we may have the free nhs here in the uk but it is in a shocking state, hospitals are filthy,people dying of super bugs and viruses and never come out alive,post code lottery if you have a terminal illness you may not be able to get treated and left to die depending were you live.i would pay to go private if i had the money to do so, i have no faith in the nhs system or docs anymore.
i had cancer at the age of 23, i went to doc for 8mths in pain, examined me and said i was fine there was nothing wrong, in the end i was sent to the hospital and during an endoscopy found i had 3 small cancerous tumours,thankfully i knew my own body and something was wrong and it was caught early enough to treat but if i,d listen to that doctor i may not be here today.
i am going to have a discussion with lindag from spf to see how i can sort these neuro's out and start a campaign for more awareness for pls/als.
caroline
 

Geo

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was one of those radical Union guys . Only thing is farmers and Doctors have the government right where they want them . Incompetant Nincompoops . We had to retest every year to get our license renewed and also had Continuing Ed . Had to keep up on new things . The Big Babies dont have to because they'll refuse to be Doctors . My Thaughts are We Dont need You ,We Have enough Quacks . I beieve in the Clinic Concept Where you have several Doctors of the same Disipline Looking at you .This is what they do at Mayo ,I had 4-5 Neuros look at me . They were very thorough ,Expensive ! But i received an Honest Answer and very straight forward .We're not sure what you have but you'll problably not die from it . Then i came back home and got a diagnoses of PLS from a MDA Neuro . According to all Present Clinical Knowledge
We should not have any Symptoms .BUT Medical Technology is so far behind the Curve they cant see it . If you or I encountered a Problem in our Jobs , would we say ," i dont know " or would you make some concocked story up that has lots of big words in it . Personally i would say this has me Baffled so i would like you to get a second oppinion,im going to refer ,this person . I also wanted my customers to know why something happened instead of keeping them in the dark . This is why they always asked for me to come out to their house . Now you go to the Doc. and he doesent sit down and talk he scribbles a bunch of crap down and walks out . If you start asking questions he cant or doesnt want to answer he'll get on the deffensive . Geo
 

MICHELLE40f

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hi

prometheus,You sound like me,my neuro diagnosed me with HSP,no blood testing,because insurance wont cover and the test can be neg. and still have a diferent gene causing it,i often wonder if i have HSP OR PLS,I have some slight arm and swallowing/slurring problems,when i ask him about this he says its all part of my disease! now a different neuro at the same office is the one who did my emg and he put that pls could also be a differential diagnoses but that i would be quite young for this disease. all this started for me 7 yrs ago,and i am now 41,lol oh actually i am 41 today to be exact.hehe Happy b-day to me.:mrgreen: i almost forgotted cause i been reeeeal busy lately.....lol
 

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geo

i am going to send the nords booklet, emails and another neuro's statement who treats pls patients all stating pls does not show on mri, mri is to look for lesions on white matter not grey matter to the neuro i saw last week. the hospital i went to is in leeds were jane tomlinson lived you may have heard of her, she had terminal breast cancer and raised about 2million for cancer research but she was denied a life prolonging drug because of this post code lottery, the health system is a sham yet these medics and hospital directors ect get big fat wages and complain about the hours they work.
what about the people who are suffering and dying, basically they dont get a say in anything.
caroline
 
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