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Spastic Paraparesis

Hi, does anyone else have this?

i have searched on the net, but keep getting hereditary or familia, or tropical spastic paraparesis. :?

My neuro wrote this on my notes (for bloods). Well he actually wrote. ' Weak legs. Spastic Paraparesis. ' (I noted no query marker (?) so presume he's not querying it, he was stating a problem I have?)

The only thing I have found is on the MSTrust site which states..
(In a paragraph about the dx of PPMS) "Most commonly this is seen as increasing stiffness and weakness of the legs (progressive spastic paraparesis), but other symptoms can occur such as unsteadiness, tremor or visual loss. "

My legs are getting progressively weaker, painful and suffer with spasms, some quite nasty. My balance is getting much worse too.

Normally things are found easily on the net, but this one has stumped me.

Jx

Inactive user

It's the name of a symptom rather than a diagnosis. It basically means that you can't move your legs properly because of abnormally tight muscles (AKA hypertonia or spasticity). It's one of the things that a quite lot of people with MS get :(

Baclofen and other muscle relaxants can make a really big difference. If you aren't already on one, please ask your GP.

Karen x

Inactive user

Hi J you sound like me, well it is just my right leg just wont work! my balance is terrible and the cramp spasms balance leg locking and stiffness. I don't walk very much at all now to many falls and the fact i don't have the energy.

I take gabapentin and baclofen and they really help.

I don't have a dx yet but doctor seems to think ppms so will just have to be patient

Tracy x

Inactive user

Thanks Karen. It makes more sense as a symptom!! My neuro obviously thinks I have MS, but just wont tell me!! I'm not on any drugs. Neuro offered me them last year, I said I want keen to keep off drugs for as long as poss. He didn't offer me any this time round. GP said no use taking any medications yet as my symptoms are not consistent enough!

Thanks Tracy. This waiting lark is a pain in itself isn't it!! I'm trying to not let it restrict me too much, (sometimes thats impossible) but I figure if this thing gets worse over time, then I've got to keep going for as long as I can!! I haven't actually fell yet (well once last year) but I stumble a lot, or wobble. Not sure how I am going to feel if I start falling! It's bl***y horrible this!!

Take care

Julie x

Inactive user

Hi, I was admitted into hospital with spastic paresis and optic neuritis about thirteen years ago. I still don't have a definite diagnosis although I've had a couple in the past. I now need to use a wheelchair outdoors but baclofen kept me walking at first and it's still a faithful friend.

Spastic paresis is usually from a problem in the spinal cord, especially the corticospinal tract and is part of what is called an upper motor neuron problem. Upper motor neuron problems are found by neuro's when you have very brisk reflexes, positive babinski sign, increased tone and possibly clonus. My mobility in the house is have to swing legs around from hips to move my legs. The other is I try to lift legs and I end up dragging both sets of toes across the floor. I fall and can often tip backwards.

Spastic paresis is a symptom of many things such as spinal cord injuries, MS, neuromyelitis optica, hereditary spastic paresis, primary lateral sclerosis and subacute combined degeneration of the spinal cord due to longstanding B12 defficiency.

It can also be found in rheumatological problems such as Hughes syndrome, sjogren's, systemic lupus and lyme disease.

If it suddenly worsens as mine has lately i always check for a urine infection, constipation, chest infection. Any tight clothing can increase it, I can't cope with wearing a bra now. It can be a barometer to how I'm doing. I've learnt this over years and know when to increase meds and when an infection needs treating.

Jules, I hope they find out what is causing yours.
Jacqui
xx

Hi All......I was rx with TSP 7 yrs ago.......this morning was the first forum i've come across...(google alerts)...I'm somewhat amazed after all this time.......would love to share....it's been a real battle.....I'm a yank, therefore very fragile, so you brits be nice to me.......bill........

Hi, well now...mmm.

After 12 years of being told I `probably had PPMS`, another neuro said I had HSP.....hereditary spastic paraparesis.

I was knocked sideways by this, so I did my research, joined the support group, went to their AGM and made a special friend, who I still see.

A year later, yet another neuro said I didn`t have HSP....but more likely PPMS. Nice, eh?

Still without a firm dx, but feeling totally peed off by all neuros (seen 12 or so)

Now, is your SP of the HSP variety? Did your neuro ask if there are any other family members with similar problems? This is where my dx didn`t stcik. But HSP can suddenly start with anyone....??????

Like MS, there is no cure/treatment for HSP...just symptom meds to reduce problems.

I am a full time wheelie of some 7 or so years now.

What else can I tell you?

luv Pollx

Inactive user

Thanks Poll

My neuro hasn't told me a thing, he told me my legs are 'marginally' worse than last year! (But then he contradicted himself by telling me he still think MS unlikely due to me not getting new symptoms just the symptoms I have are getting progressively worse!!)

He has ordered spinal MRI (He said no point in doing another brain MRI as last year it was clear!!!!!) and an LP and a VEP

It wasn't until I read the notes I was supposed to hand into to reception to book my further tests..

On the bloods one.. he wrote "weak legs/spastic paraparesis"

On the others I read.. "Possible MS but MRI NAD"

and.. "Evidence of demyelination ?MS"

SO my neuro hasn't told me a thing, but I read what he wrote about me anyway!!! (Reading between the lins I think he is possibly thinking PPMS, but just wont tell me !!)

I think, as Karen has pointed out, he written spastic paraparesis as a symptom of MS?? Not as a dx?? But as he wont tell me anything I'm doing a lot of guess work!! Very frustrating! (during examination, my legs were very brisk and my big toes went upwards!)

I know my legs are getting worse, very stiff, painful, spasms (some very nasty) and although I can still walk, they tire very easily and struggle walking after relatively short distances. (One thing I am 'concerned' about is during all this research into spastic paraparesis, it seems a lot of MSers get it? It seems to be connected with PPMS a lot?? And people with it seem to end up in a wheelchair?? (I know the percentage of MSer's who end up in a chair is low, but do they have spastic paraparesis??)

I just wish the neuro would tell me what he is thinking.. and tell me what is wrong with me!!! I think then I can battle on and face this illness head on!!

Sorry this message is turning into a rant so I'll end it here.. :)

Thanks again Poll!

Julie x

Inactive user

Hi again.

Just read your reply to Poll. I think spasticity is probably more common in people with PPMS and with SPMS, but it definitely happens in RRMS too and there is no way that everyone who gets it ends up in a wheelchair. It's really important to get the right treatment and meds to prevent it from doing its worst though. When it's bad, then yes, a wheelchair is often necessary, but there is no reason why that couldn't be a very long way off.

Remember, MS is massively variable and extremely unpredictable. A wheelchair may be in your future, but it may not. And if it is in your future, it might be 10, 20 or 30 years off. And do you know what? There are worse things than wheelchairs! I'd take being in a wheelchair but getting to my kids' weddings, seeing my grandchildren, etc, than being without a wheelchair, but not making it that far. MS sucks, but it gives us a chance to live a life.

Sorry if that was a bit full on - but one of the things I was terrified of when I was first diagnosed was a chair. These days, it's one of my best friends - it allows me to have a much richer life. Actually getting to the stage where you start to use one sure as hell changes one's perspective! I guess that's like everything though - when you face your fear of the unknown, you discover it's not so scary after all!

Karen x

Inactive user
bill wrote:
Hi All......I was rx with TSP 7 yrs ago.......this morning was the first forum i've come across...(google alerts)...I'm somewhat amazed after all this time.......would love to share....it's been a real battle.....I'm a yank, therefore very fragile, so you brits be nice to me.......bill........

Hi Bill, and welcome to the site :)

We are always kind on here. Well, most of the time anyway!

I think you'll find that most people on here won't know anything about TSP (me included!), but you're very welcome nonetheless. We share symptoms, and that means we share a lot of other stuff too (like dealing with them!).

Karen x

Inactive user
bill wrote:
Hi All......I was rx with TSP 7 yrs ago.......this morning was the first forum i've come across...(google alerts)...I'm somewhat amazed after all this time.......would love to share....it's been a real battle.....I'm a yank, therefore very fragile, so you brits be nice to me.......bill........

Hi Bill, welcome from me too.

Jules, as I posted above spastic paresis can be caused by many other things. My VEP's have been positive for years and optic atrophy shows on MRI. I still don't have a diagnosis.

You could be surprised how much an anti spasticity med like baclofen could help with your mobility, stiffness and fatigue. I was housebound and missed so much of my daughter's life before I got a wheelchair. It enabled me to go out into the real world again and gave me a new lease of life.

It affects people differently. My Mum has been a wheelchair user for a long time. My daughter was two when my Mum started using a wheelchair and about thirteen when I started using one. I suppose that I'm lucky in that I have a role model who has achieved so much as a wheelchair user.

What bothers me is not a wheelchair but my condition that's progressed and still not having a definite diagnosis.

Jacqui
xx

Hi, Karen and Jacqui..........Good day to you............Well it seems I've made a slight error..not unusual for me........I thought Spastic Paraparesis was the same as Tropical Spastic Paraparesis.........What you folks speak to is a symptom of MS.?....whereas TSP is a disease upon itself.....a virus........both diseases cause demyelination.....symptoms are the same.....STP is progressive.......After many many neuro's and several mis-dx and all is said and done......the only difference between the two diseases is... MS forms scar tissue on the atons and TSP does not.................Anyway, was hoping to actually speak to someone who has TSP..........The search continues.......my heartfelt best to you.......Bill............

Inactive user
bill wrote:
Hi, Karen and Jacqui..........Good day to you............Well it seems I've made a slight error..not unusual for me........I thought Spastic Paraparesis was the same as Tropical Spastic Paraparesis.........What you folks speak to is a symptom of MS.?....whereas TSP is a disease upon itself.....a virus........both diseases cause demyelination.....symptoms are the same.....STP is progressive.......After many many neuro's and several mis-dx and all is said and done......the only difference between the two diseases is... MS forms scar tissue on the atons and TSP does not.................Anyway, was hoping to actually speak to someone who has TSP..........The search continues.......my heartfelt best to you.......Bill............

Sorry to disappoint you - it must be tough not having someone to talk to :( You're welcome to stick around. A lot of people on this forum don't have a diagnosis at all, so the more experience we get on here, the more likely they are to get some advice that works for them. Anyway, I wish you the best of luck in your search, but feel free to pop on here when the mood takes you :)

Karen x

Inactive user
bill wrote:
Hi, Karen and Jacqui..........Good day to you............Well it seems I've made a slight error..not unusual for me........I thought Spastic Paraparesis was the same as Tropical Spastic Paraparesis.........What you folks speak to is a symptom of MS.?....whereas TSP is a disease upon itself.....a virus........both diseases cause demyelination.....symptoms are the same.....STP is progressive.......After many many neuro's and several mis-dx and all is said and done......the only difference between the two diseases is... MS forms scar tissue on the atons and TSP does not.................Anyway, was hoping to actually speak to someone who has TSP..........The search continues.......my heartfelt best to you.......Bill............

Bill, I can imagine you having a hard time to getting to that diagnosis. I know it's a virus that mainly affects the caribbean etc, but don't much else about it.

I don't see why you can't stick around here as your symptoms are basically the same and at least you would have others who can relate to how they affect you. It's hard having a rarer diagnosis as support is non existent.

Jacqui
xx

Karen, Jacqui........Hi........Thanks for your kind responses......I will check in every now and than....... If anyone on your forum has questions about TSP, would be happy to share......Stay well on that side of the pond..........bill............ps. I was in your lovely country a couple of times back in the 60's..... fond memories!!........

Hello,  

Back in June I saw my new neurologist,  much nicer than the old one.  He said I have spastic paraparesis and early signs of PPMS but still not committing to diagnosis.  Showed me lesions on the MRI and what he called fuzzy bits that they don't know what they are but probably contribute to my symptoms.  He said I had to notify DVLA as it was notifiable, thought that would only be for MS?  Anyway still waiting to get my licence back.  He said he would report on symptoms when DVLA contact him and would say I could probably drive with hand controls and would need to renew every 3 years, again thought that would indicate PPMS.  Have had hand controls anyway for 2 years.

 

M

Hi Martin,

Sorry to hear about your diagnosis - or the lack of one.

But yes, you have to tell the DVLA about any condition that affects/might affect your ability to drive - and would be expected to do so of your own accord, even if a doctor didn't tell you (i.e. it's personal responsibility).  There's no way the DVLA should remain unaware that somebody has needed hand controls for two years!  Lucky you haven't had an accident in that time, as you could have found your insurance was invalid, if you were driving with problems the DVLA didn't know about.  You should tell the insurer as well, but they are not allowed to raise your premium.  Some insurers don't really seem interested (because it doesn't affect premiums), but that doesn't mean you shouldn't tell them.  Again, the duty is on the individual to tell the insurer about ALL relevant circumstances.  If you don't, and you have an accident (even one that's unconnected), the insurer could use it as an excuse not to pay, saying they weren't in full possession of the facts.

Tina

Insurance through Fish at the moment and have kept them aware of all changes as they've happened, thank you for your reply.

Hi, new here, been diagnosed with hsp and don’t understand some of the jargon here ! I decided to stop driving even though I tried hand controls as I noticed I was being impulsive. After much wkseing I spoke to a Danish neurophysiotherapist who recommended a Christiania cargo trike and am involved with wheels for wellbeing. I also find walking tiring, balance gone and found fascinating comments about this disease on a vet site about cattle!. 

Just upgraded with electric peddle assist wish I had done that earlier! 

What am I rambling about? Maybe the choices are not only sticks, wheelchairs and cars? :-)

I have MS

Hello Evilc

We used to have a forum member who had been diagnosed with first PPMS, then HSP, then the doctors took back the hereditary label and just called it Spastic Paraplegia. There aren’t a lot of HSPers who use this forum. Although some of our problems are similar, there are also quite a few differences. 

So our knowledge of the disease is really quite fragmentary. 

I think there’s an HSP Facebook group. If you are on FB, you could join their group, you may find there are more solutions and answers to your questions there. 

Sue

:-) thx. Couple of comments, I was really commenting on the transport issues in the thread, and my background is one that wants to find relationships and connections, thus I think it is critically important to have cross disease discussions because the differing perspectives might highlight something important. I am very suspicious of silos and we are trying to tease out a tangled bank! :-)