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Feb 11, 2016
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DX UMND/PLS
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03/2016
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England
Hi everyone, I just wanted to see if this is the correct place to post? I have been extensively tested in the UK for ALS. EMG clean, all other testing normal. I have had two neurologists give the same opinion and the findings are "Spastic Paraparesis, cause unknown".
You will see from my DIHALS posts previously that I have all sorts of weird stuff going on, so I won't go through it all again:confused:
I asked if this maybe PLS and the last neuro said he had only known one case in his 20 years, but did not say no. He is referring me back to the NHS and recommend 6 monthly reviews.
So, I am not going to know much for a while and just have to watch and live as best as possible each day.
I understand it could progress to ALS, hence the testing periodically. There is no history of Spastic Paraparesis in my family line.
I just wondered if this is the right place to "hang out" and is it a shared experience that Spastic Paraparesis is just this and usually just progresses on relentlessly,but slowly? Does it ever reverse? My symptoms appear to have been rather fast moving over the year and I would say each day I feel a bit weaker. Any thoughts would be appreciated and do let me know if I don't belong here, :oops:
 

avnl

Distinguished member
Joined
Sep 6, 2011
Messages
157
Reason
CALS
Diagnosis
02/2005
Country
US
State
RI
City
warren
My husband has had symptoms for 12 years. We started with a diagnosis of spastic paraparesis. We were monitored by Dr. Fink yearly. With the arrival of bulbar issues, his diagnosis was changed to PLS. He has had 4 EMGs negative for lower motor neuron signs over a span of 7 years since the onset of symptoms. M is followed now at the ALS clinic at MGH. He is on the cusp of needing a power wheelchair and a Gtube.
Alas, really time will tell where you fall on the motor neuron progression. It can be quite confusing. There are a few few threads that discuss whether PLS can morph into ALS, whether PLS and ALS are variants of the same disorder etc. I am greatful that we have been given the years we have. I hope that you also follow a slow course. Regardless of the diagnosis, you take it one day at a time and problem solve each issue.
Anna
 

ShiftKicker

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Joined
Mar 16, 2015
Messages
2,703
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
So sorry you find yourself here, but warmest of welcomes.

Yes, this is the place to come hang out. I've found it very helpful and the forum community is very supportive. The PLS forum is not as active as the general MND and ALS section, but there are many knowledgeable people who will jump in if you have any questions.

I don't have spastic paraparesis, so can't answer your questions about progression, but hopefully someone will be able to chime in soon.

Fiona
 

Suzannah

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Joined
Mar 19, 2014
Messages
125
Reason
DX MND
Diagnosis
08/2014
Country
Uni
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TEXAS
City
Deep in the Heart of
Hi Hope,

I also went through extensive testing and was eventually diagnosed with hereditary spastic paraplegia - HSP - about two years ago (though that diagnosis has been recently revoked and things are back up in the air).

As you probably know, "spastic paraparesis" is really just the descriptive name of a symptom and not the actual disorder. If you have a form of HSP (and there are a lot, and you can have it even if it doesn't appear to be in your family), that disorder is related, but distinct from ALS. HSP does not turn into ALS (unless it was misdiagnosed in the first place).

If the spastic paraparesis is actually a symptom of PLS or ALS, then all bets are off

I have found it useful to post on these forums, though as Fiona notes, the PLS forum isn't quite as active as the others. If you use Facebook, there is a good group for HSP/PLS from the Spastic Paraplegia Foundation, Inc organization. The flow of information is faster. But you can also find some really good information and support here, too.

Best Wishes,
--Suzannah
 
Joined
Feb 11, 2016
Messages
23
Reason
DX UMND/PLS
Diagnosis
03/2016
Country
UK
State
UK
City
England
Thank you so much for all taking the time to reply! Some very helpful info. It is such a confusing time, but will take one day at a time! I have been following some of your posts and found them very,very helpful indeed.
 

billbell52

Distinguished member
Joined
Feb 1, 2010
Messages
223
Reason
DX UMND/PLS
Diagnosis
05/2005
Country
US
State
TX
City
Garland
If you think you have PLS this is a good place to hang out. PLS is VERY rare. You are 100 times more likely to get ALS. I am not surprised your neuro has only seen one case. ALS can appear like PLS in the early years. Usually after 4-5 years 90+% of ALS patients will show LMN symptoms.
 
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