Newbie. Waiting for a diagnosis

[Stifflady]

Hi. My first posting on this forum
I'll tell you a bit about myself
I have been experiencing increased balance and walking difficulties since January I had to take sick leave since may.initially they thought it was a cervical disc problem but then decided my symptoms didn't fit. They are
Hyperreflexia. Ankle clonus +++ spasticity both legs. Severe in left leg. . Arms mildly spastic
I have had numerous falls. I now can only walk with a walker. My balance is so bad. . If I stand up too straight I fall back like a log. If I trip my body becomes paralysed and I fall foresees like a log. I am unable to protect myself from falling which is frightening. . Does anyone else get this? I've just spent a week in the national hospital of neurology at queens square having investigations
My MRI brain was clear and they confirmed that the bulging disc in my neck was not the cause. EMG normal. Results outstanding for lp some bloods and genetic testing. They have ruled out stiff persons syndrome and pd . Th neurologist said that the possible diagnosis would be pp ms, pls or hsp I also have a very exaggerated startle reflex whenstartled my body goes rigid and can cause falls. I would be really grateful if anyone could relate to any of my symptoms. I'm not looking for an armchair diagnosis. I just need to talk to people who understand Feeling helpless and frightened sorry to ramble. X

 

[alex scared]

hi stifflady sorry to hear you going through all that . . But we have stuff in common first I am a few hours west down the english coast from you second i also new here and third although i got different symptoms i also waiting for some kind of answer. . I think your perfectly entitled to reach out for support . . Its not rambling . . Its natural . . I already spoken to some wonderful people here that are full of support . . It is an anxious time for sure but dont hesitate if you wanna talk. From my limited knowledge here one positive i got from your post was normal emg . . That is good. Far more qualified members than me will help you through that. . One thing i also learnt anxiety is fuel to the fire . .try and keep mind occupied . . One day at a time . . Good luck . . . Alex

 

[arkallen]

It's so natural to feel afraid and helpless isn't it? For some reason I find that not knowing what's actually wrong is more difficult than dealing with the symptoms themselves. I certainly feel for you, hope you find some clear answers soon!

 

[Tokahfang]

They were between PPMS and HSP with me, and then PLS as I progressed farther. This is definetely a place you can come and talk, as well as the PLS-Friends and HSP-friends groups on yahoo. You will find many who share your experience and can give you helpful advice.

To my mind, once it was PPMS or HSP/PLS, there was a certain amount of relaxing. There were no big treatments to decide between, and nothing I have to be doing about the situation. They are all treatable by symptom only, and lifelong in nature. That made the game about learning how to get around and live in this new life of mine.

Some people find physical therapy helpful, some don't, but it is worth trying to see how your body reacts. Mine becomes extra spastic, so it wasn't the route for me, but for those who are still ambulatory, it can improve walking and reduce falls.

Wheelchairs aren't just for those who can't walk at all - they give security and extend the range of your mobility long before you need to use them full time! I wish I had gotten a wheelchair instead of dropping out of college. If you can get one the good way (through insurance), make sure your balance problems are accounted for. A manual wheelchair has to be set up different for people with poor balance.

Others can speak more specifically to balance/falls, as my balance has always been obscenely good. I also had the opposite of the more traditional foot drop - my toes/ball of my foot are stuck up, so I haven't been able to push off them for many years, but they don't trip me. My legs were stiff as boards standing for many years, but with my excessive balance (for a PLSer, anyhow) I was able to walk like a circus stilt walker for most of that time. It was weakness that finally kicked me off that plan.

Have they started you on anti-spasticity drugs? They sap your strength and sometimes have other side effects, but can be good.

Welcome to the board!

 

[Alyoop]

Beky, sorry to cut in on this thread, bit I was stunnned. My feet both hace toes sticking up that don't touch the ground when standing, and I cannot push off with the right one at all. That is one element to my funny walk. I try to work out why I cant push off its weird as my ankle weakness in anly mild, so I felt I should be able to.

Newbie, we all know how horribly frustrateing it is waiting. I am in a holdind pattern as well, and slowly getting worse as my wekness increases. Having a definite name would be easier, but many in this group, have the same problem, so it has aleviated the anxiety greatly.

Wish you well. Its great that you were lucky enough to have a top team at Queens square, Beky was right use aids, I have just started using a stick but only very occassionally. It makes a massive difference to my stability andI can walk a bit faster. I wish I could overcome my fear of the bthing and use it all the time, but it scares me.

Aly

 

[Tokahfang]

For your toe area to push down, your mucle groups in the back of your leg need to contract and the front movement muscles need to relax and allow that to happen. If they are spastic, they don't relax, and don't have enough "give in the rope" to let it happen. Foot drop is more traditional because most people seem to be spastic the other way, but it is all leg spasticity.

What is really amazing is that this spasticity combined with the simple mechanics (tendons, ligaments, and bones) can produce an effect not unlike tenodesis in the hand. Individually, not one of my muscle groups in my leg is capable of holding me, but my legs can mechanically get me across a small room and back!

 

[olly]

hi stifflady,welcome to the forum.
the diognostic process you are going through is very typical and it can be slow,sometimes several years.
i have the same symptoms and it was thought i may have had ms so had repeat mri's for several years plus genetic testing even tested for stiffmans before being diagnosed with umn disease in nov 07.
it would be good to ask for baclofen if you are not already on it.
like you in the early years i had alot of falls and was very very stiff.............but after 10+yrs on baclofen i dont fall anymore and less stiff,balance still not great.
hsp tends to stick to the waist down were as pls effects all the body including jaw,speech ect eventually.
there are a few of us brits here so we can help with any other questions like adaptions,benefits ect.
take care. caroline

 

[olly]

beky,my old pt said my left arch had fallen due to weakness but i feel especially with slip on shoes that it feels more raised and i get pain under my foot.
also find it hard keeping shoes on on that foot.

strange but my legs feel stronger (used loosley)when walking than standing still,when standing i tend to rock from one foot to the other to keep standing straight.

 

[AKmom]

stifflady so sorry you are having to deal with these health issues. You have come to a great place for support. We all might progress differently but it seems that they symptoms pretty much are all the same. If you have only been stuggling with it since the beginning of this year then I can see where your shock of what is going on can make it even worse for you.

I myself have been dealing with symptoms for about 20 or so years. And only recently have they started pointing it toward this diagnosed of pls. And now that I understand what pls is...I have a hard time accepting that the docs didn't realize this in 20 years! So I do hope they find out for you a diagnosed soon and that you can be treated to help with your symptoms.

Take care.

 

[Stifflady]

Thanks for all your comments , it's good to talk to people who have experienced similar symptoms and the agony of getting a diagnosed. From what you say I'd better start being a little more patient.
I have been taking baclofen for 4 weeks until a couple of days ago I felt it was helping but now I'm back to being stiff as a board again, so frustrating! Speak to you all soon thanks again
Cerian

 

[olly]

4 weeks is not long enough for it to get into your system,it can take upto a couple of months to start and see a difference.
what dosage are you on?
normally they gradually increase the dosage over several weeks ,in the uk the recomended maintenance dosage is about 60mg.
you need to persist with the baclofen and see your gp about increasing dose if its too low

 

[Stifflady]

Hi olly, I'm on 50 mg daily. My neurologist wants to give it some time and then maybe consider a pump, does it usually make a significant difference after a couple of months , does it improve balance?
Thanks Cerian

 

[Tokahfang]

Balance is made of a couple components, but there is one that it can help with. Spasticity has a "clasp" often, kind of like when you're wrestling and then the other guy stops pushing, and you overcorrect and fall over or the like. When you get into a bad balance situation and your legs realize it, they try to move to correct it. With spastic clasp, you push push push, and then it suddenly works and it overcorrects, often CAUSING rather than preventing falls!

There are other parts too, though, like knowing where your limbs are in space without looking, that some HSPers and PLSers have trouble with, and anti-spaz meds can't help that.

 

[olly]

like beky said by helping with the spasticity and stiffness it will also help with balance..........to some degree.
some of it is neurological,there are a few areas in the brain that if diseased can effect balance.
the main area and that can effect mnd's is the cellerbelum at the back of the head above the brain stem.