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Botox & Diazepam

Hallo,

Greatly in need of advice - journey length with this issue : 1 year 6 months (still none the wiser)

Issue: right leg ‘fatigues’ after more than a few minutes of walking, specifically the foot cannot be pulled upwards & only the big toe pulls forwards so a sort of foot drop ensues. After resting for 30 secs, all is fine but appears again as soon as I start walking.

7 weeks ago I had 8 botox shots in my right calf. Saw Neuro last week as it’s not made much difference, Neuro stated ear infection 2 weeks post shot may have halted good botox activation. Neuro stated pleased with hip strength (I guess thanks to the hip physio over the last 7 weeks) but Achilles tendon still very tight.

Only got antibiotics for ear infection 1 week ago from GP (don’t ask).

Neuro last week prescribed 2mg Diazepam & 1/2 Clonazepam to relax muscles daily.

Have not taken the above as ear infection is still around and am still taking antibiotics and quite frankly, the Googling of side effects scared me (silly me).

As the ear infection is subsiding, I am finding the walking is slightly better (always is during the time of the month but 2 days post TOM, still feels a little better).

I asked the neuro about walking aids as its been 18 months (I only started seeing him 7 weeks ago as was referred to Ortho’s etc) he categorically stated not needed, I would improve. I’m pretty down as I have lost my independence and cannot go anywhere on my own hence wanting to explore the walking aids.

Questions that I would greatly appreciate some advice/responses on:

  1. Can that time of the month assist with muscle relaxing (thus should hormone therapy be pursued);

  2. Can Botox actually take a lot longer to work - has it worked/not worked for any of you guys;

  3. Experiences of Diazepam (not going to take the Clonazapam) - does it help?

Really hope you can assist with this. Thank you.

1 Like

Hi Rosey, in my limited experience of Botox it has worked within a week to 10 days. However I have had 10 years plus experience of diazapem and find them brilliant, for me a wonder drug for muscle relaxation. I take baclofen daily and diazapem as needed. I take the 5mg dosage.

regards,

ann xx

I have never tried botox.

However, I have used diazepam on and off (now always on) for years. Ironically, I was first prescribed it for anxiety, when nothing else worked (neither I nor my GP knew I was already ill with MS and that this may directly or indirectly have contributed to the anxiety…)

Like Ann, I take both Baclofen and diazepam, and find both very helpful for cramps, spasticity, and general muscle tightness. I usually only take diazepam at night, but if I anticipate a particularly challenging day, I will take some in the daytime, as my walking is much better with it (not as stiff), and it has the added bonus that it is an anti-anxiety drug too, so if you are feeling a bit daunted by the ordeal ahead…

I’ve never experienced (or read) that the time-of-the-month is of any benefit at all to us gals with MS. In fact, as soon as I was diagnosed, I went on the mini-pill, to both regulate and minimise my periods (I was down to 21 days, and lasting a week, so only a fortnight NOT blighted).

I’ve always found my periods worsened all my symptoms, so now I take two courses of the pill back-to-back, so I only get one every two months, instead of every three weeks! Fantastic!

Worsening of MS symptoms during the menstrual period is quite commonly reported, and may be due to a rise in body temperature during that time.

For years I assumed I just had the periods from hell, never suspecting they could be aggravating an underlying condition.

This week I’ve had my “rest” week from the pill, and I’m sure it’s no coincidence I’m cramping all over the place (I don’t just mean pelvic cramps), even more insanely than usual - and that’s even WITH the baclofen & diazepam. So as far as I’m concerned, no, I certainly wouldn’t want to take anything that in any way simulates a period, as symptomatic relief for MS, as that’s when I’m absolutely at my worst.

Tina

Hi Rosey

I’ve never found that walking improves with periods. But luckily, I seem to be having an earlyish menopause (hooray) so haven’t had a period for about a year! Not that I particularly noticed any change in walking then anyway.

I’ve taken Baclofen for stiffness and spasms for years. It did help but in the last couple of years I’ve experienced much worse spasms in my legs and was being woken up with painful spasms so started Clonazepam, I understand your reluctance, but honestly I can’t see that there’s much of an issue. If you’re happy to take one benzodiazepine (ie diazepam) then why not a different one? Surely there’s just as much chance of tolerance with both drugs? And as far as I can see the side effects are much the same. Personally I see no harm in either drug if they relieve symptoms. And my rehab doctor and GP were happy for me to take Clonazepam and to self regulate the dosage to get the results I wanted.

I think Cloneazepam has been a wonderful drug for me. It’s helped stop afternoon and evening spasms, so much that I’ve slightly decreased Baclofen, and I sleep so much better these days. I seem to have awoken my inner teenager, I’m now capable of sleeping to 9.30 or even 10am. It’s amazing.

You may have asked more about Botox and diazepam, and all I’ve done is sing the praises of the drug you don’t want to take, sorry for that, it’s just that it’s worked wonders for me.

Sue

Reading your post again, it’s not clear whether stiffness/spasticity is really the problem - though I assume you were assessed and they decided it was, or you wouldn’t have been offered botox?

Fatigue and stiffness aren’t really the same thing, although I suppose there’s some interconnection, because it’s harder to walk with stiff muscles , so I assume you would get tired more quickly.

However, I’m not sure fixing one would necessarily fix the other, as getting fatigued after just a few minutes is not always a direct consequence of spasticity. I find it interesting that they’ve decided, in this instance, it is, but I wonder if that’s why the botox made little apparent difference?

You might want to research “fatigability”. I think this is linked to impaired nerve transmission (it’s hypothesised that it’s as you get warm from the effort - temperature tends to weaken nerve transmission). It has no direct connection with muscle stiffness, because it’s that the muscles simply aren’t receiving clear, uninterrupted, signals, so don’t respond properly. When you rest for a bit, body temperature falls, and nerve transmission improves (or that’s the theory) so you’re OK again for a while. Then body temperature goes back up, and nerve transmission deteriorates, and the muscles stop cooperating properly again… It’s a horrible Catch-22, because as you start to feel better, and stride forth purposefully, you generate heat, which brings back the problem.

Tina

That explanation from Tina sounds very true for me. Have you be diagnosed with MS?

My symptoms started like yours 6 years ago but I dont have a definite dx yet.

I would take my dog for a long walk and after an hour my calf would go tight and I would get weakness when trying to lift my foot. Yet I could walk round a golf course for 4 hours and not have the problem as I was stopping and starting all the time. Over time the symptoms appeared sooner and sooner. I eventually saw a neuro and was diagnosed with fatigueable foot drop. The foot drop is there all the time now. My knee flexion and hip flexion is effected now too.

Basically I have one lesion and a clear lumbar puncture. In my own mind I suffered an isolated “MS-like” attack in 2008 and got better but then the damage that was done has caused some progression/deterioration in the damaged cord. It cant be dx as MS due to the lack of “Multiple” areas and a clear LP.

I take baclofen which helps releave the feeling of muscle tightness but it doesnt help me dorsiflex my foot. I have a FES from odstock medical for that.

I am surpised they gave you botox as your foot drop seems a lot milder than mine. The physio at the FES clinic told me to stear well clear of botox,

Moyna x

I am happy to hear that the botox worked for you - I feel it’s been the opposite for me, I appear to be walking worse since than before. It’s been about 8-10 weeks now. I’m just hoping it will wear off.

My neuro wants to give me a few more shots but I am just not sure. I can only assume that I had a fail with this or that he needs to be more targeted as to where he injects. My whole foot claws when I lift the leg!

Hi Tina,

Thanks for such a comprehensive reply & your subsequent post.

It’s strange, I now so look forward to my period as that’s the one week that I get some relief! AND I can almost work normally! (well, a normal gait for a couple of minutes until the foot fatigue kicks in). Just hoping menopause doesn’t take that relief away. I’m sorry you’re having a tough time whilst you’re off the pill - hopefully, you will stabilise when you go back on again.

Yes, I have been assessed by my neuro and he stated that the walking issue stemmed from a week hip (that’s now strengthening thanks to daily exercises) and a very tight Achilles tendon and calf muscle. The botox appears to have not made any impact and when I last went to him, he prescribed the diazapam and clomazapam with a view that this would ease the ‘spasm in those areas’. Hence the post as I have been worried by the addictive nature of these drugs but even more so, the side effects.

Now, this is where I am not particularly knowledgeable. I do not feel that I have ‘spasms’ as such, except the very odd one in my 2nd and 4th toe (left foot) when I lean forward on them. He stated that the Clomazapam would help with the spasms at night - I do not get any, so have decided not to take these (and yes I am scared of them).

I am making the assumption that the term spasms also includes muscle tightness? I have being trying to muster up the courage to start the diazapam ( half table first until I am sure there are no side effects) but am now pretty lacking in any hope that anything will ever change for me with the foot. It’s been 18 months and 9 consultants and I’m still nowhere.

Nero stated that I do not have progressive MS, nor that this was a relapse but I have never had MS confirmed but he states that this is a typical MS issue. As it’s been 18 months, I suppose I would interpret this as being a CNS issue if it’s not a relapse or progressive. I just would have thought I would need the MS to be confirmed but no, not according to him.

I think I am most worried about not being sharp when on the drugs and potential dizziness as this brings on a panic attack. As i will be stating in my response to Moyna, I want to try a couple more things before the drugs but will be looking to finally start them, if those avenue prove fruitless.

Thanks for your post x

Hi Sue,

Thanks for your reply. Wow, the Clonazepam seems to have a good impact for you. I don’t get spasms (or so I think) and definitely nothing that wakes me up so I am not sure why I need to take it.

The diazepam, well I am working my way up to taking that, a half tablet at a time but when I feel ready. Again, I am not sure what it’s meant to do, but if it can impact the tightness in my Achilles and calf, then, I hope I will get there.

I am really happy (and encouraged) to hear that it works so well for you. Had you had any restrictive movements (walking/hands) and has it helped?

Rosey

Hi Tina,

It’s like I am hearing music (and good music at that) as I read your post

This is what I cannot seem to communicate effectively to anyone! It is after a few minutes and thus this is why I am not totally convinced that is is spasticity - unless the muscle tightens after a few minutes and contracts when I rest a few seconds?

I have researched what you set out, I cannot find too much about it, but when I bring any of my findings/theories up with my neuro, they do not seem to be heard well.

What you state makes a lot of sense to me re impaired nerve transmission. That foot is always ice cold as is the hand on the same side and that too is getting similar issues. Nothing I seem to do ever brings that side up to the same temperature as the other. I have seen a Vascular consultant and had a doppler but nothing was found to be causing the coldness from that discipline.

I hope to be seeing my neuro after Xmas and I will try and take some research to him. My GP is useless and I since I moved out of the area to a new practice, they will not refer me to an NHS neuro until I have written to them condensing all my history over the last 3 years (even though they have access to this). They will not give me my B12 shots nor Vitamin D either.

Onwards with the journey. Thank you x

)Hi Moyna,

Thanks for your reply - I think we corresponded some time back as I remember some of your history set out in your post.

I too do not seem to have a definitive diagnosis. When this all started (August 2012 and before the foot issue) I was told it was ‘probable MS’ but I needed a second episode in space and time to confirm.

A year later, I was told it was Transverse Myelitis and may never reoccur. Now, literally in September just gone, my neuro matter of factly, in response to my question ‘Is this MS?’ stated ‘well yes, you do have MS but this is not a relapse and it is not progressive MS’ I’m still in shock as I have never had any tests, latest MRI’s earlier this year, did not show any demylenating lesions and if this is not the second episode - then ???

I could cry (but will just bite into my lip and try not to as I promised I would not shed a tear in November and I have 8 days to go) because your story and symptom progression absolutely mirror mine! I too want a FES but my neuro has categorically told me that I don’t need one and that once my hip is back up to strength, he can ‘sort ot my lower limb’. My GP is beyond useless and I also feel that once the tightness is addressed, I still won’t be able to dorsiflex my foot.

I too was surprised about the botox and many physio’s that I have seen before (and after) have told me not to bother with it but I was so desperate. I am going to try the following things:

  1. Acupuncture for the muscle tightness then

  2. Electro Acupuncture, then if nothing changes…

  3. The diazepam and then try and force my GP to refer me to a FES clinic for assessment.

Be interesting to know if anyone has had any luck with acupuncture.

My foot drop was mild and I could walk for a few minutes before it fatigued, since the botox, I can make it from one end of the room to the other and it varies significantly from moment to moment and I have not idea what the contributing factors are. Only that when the time of the month appear, I seem to get a normal gait and can walk a little longer.

Does your FES allow you a better gait and the ability to walk independently? I cannot even get to the toilets at wrk unaided let alone go anywhere by myself. We have a Christmas holiday in the snow booked (dreading it) from sometime ago and I am already worried about walking in the airport and getting on to the plane let alone the snowy/icy nightmare.

Do you use your FES all the time? Do they/you feel, it will help re-train the ankle muscles or it it for life?

Rosey xx

Hi again,

I think the sedative effects of diazepam vary greatly depending on you initial state of arousal (not the sexual kind).

Because I was first prescribed them for anxiety, I had a very high baseline state of arousal - i.e. keyed-up, on edge - whatever you like to call it.

Because of that, the only effect of diazepam was to bring me down to what most people would consider a “normal” level of functioning - i.e. able to leave the house without throwing up, not having the No. 2s so much I bled, that sort of thing.

Because I was on such a distressingly high state of alert to begin with, there was no way diazepam was going to make me literally fall asleep - it just neutralised an exaggerated and misplaced fight-or-flight response. I didn’t feel drowsy at all - I just stopped throwing up, which was brilliant!

Obviously, if you are NOT taking them primarily for anxiety, your baseline state of arousal will be different.

Even so, I personally don’t feel drowsy on them if I’m busy or engaged - I get no sense of intoxication.

I do go to sleep more easily IF I take one and then lie down (no external stimulation), but as that would typically be at bedtime anyway, it’s no bad thing. I don’t want to lie awake for ages, contemplating all the things that hurt.

Benzodiazepines (the class of drugs both diazepam and clonazepam are in) can be considered similar to alcohol, in that they affect the same part of the brain, and can have the same paradoxical effects - i.e. they can make you somewhat more lively and disinhibited, OR more sleepy, and a lot depends on the context in which you take them. Take them when you’re sufficiently mentally and emotionally engaged, and you probably won’t feel drowsy. Take them when you’re tired and bored, and you probably will.

It is because of the similarities with alcohol that they also have potential for addiction - but just as not everyone who ever drinks becomes an alcoholic - or is even at risk of it - neither does everyone who takes benzos develop a problem.

IF you have ever had a problem with, or felt you might have a problem with alcohol, this could be an indication benzos are not the drug for you, as it might be an indication you are more susceptible to dependency - because of the similar mode of action. If you’ve always had a healthy relationship with alcohol - able to take or leave it - you’re probably not at heightened risk from benzos.

I always ponder the nature of “addiction” in the context of incurable disease, anyway. I accept I will probably need to take most of my drugs (including the diazepam) for life - unless they either stop working, or something even better comes along (but then I’d need that for life, instead). I think it’s rather unfair to stigmatise this as “addiction”, because obviously, you can’t just scrap symptom relief if the symptom itself is never going away - or you could, but quality of life would plummet.

Someone who is using drugs as prescribed, to treat ongoing symptoms, is not, in my view, an addict, regardless that they couldn’t easily stop. If the problem doesn’t go away, why would they want or need to stop? We don’t say diabetics are “addicted” to insulin, so if someone has to manage ongoing spasticity, cramp, or pain, why should we denounce them as addicts? My father, during his final illness, was on doses of morphine that would kill a beginner, but it would have been quite wrong to label him an addict, because what was the alternative? Untreated pain?

I don’t think refusing to live with pain is moral weakness, and there’s far too much made of this “addiction” thing, in the context of those of us with lifelong illness. Obviously, a five-day course of something won’t fix anything (unless it’s steroids for a relapse). Most stuff you take - assuming it helps - will be long term or forever. So is “addiction” even relevant to us?

None of us are on permanent drugs because we’re junkies, but because we have a permanent problem!

Finally, I don’t consider I have spasms. I have what I call cramp (even people without MS know what that is, but without treatment - and occasionally with - mine is very severe). Technically, cramp is a form of muscle spasm, so I might just be playing with words. But I don’t have the kind of spasm where an arm or leg flies out involuntarily. In fact, there is usually very little to see. Sometimes my toes have involuntarily parted, like the Vulcan greeting, but usually the only outward sign is me cursing and shouting, and suddenly not being able to use the leg, or find any comfortable way to sit, stand or lie down.

Muscle stiffness by itself is NOT a spasm. This would come under the heading “spasticity”, and is particularly common with MS and other spinal cord problems. It basically just means resistance to movement, and is sometimes further defined as speed-related resistance to movement - i.e. you might be able to complete a movement slowly, but the faster you try to do it, the more resistance you encounter.

Yes, the benzos, being muscle relaxants, should help with all forms of muscle tightness - whether it’s the ongoing one of spasticity, or the one-offs, like cramps and spasms.

If you’re not having spasms, then tell him, but I don’t think it will necessarily affect the recommendation.

Sorry this is long-winded. Hope something here helps.

Tina

x

2 Likes

Hi Rosey,

Transverse myelitis has been mentioned to me too or radiation myelopathy. Whatever it is my only symptom is right foot drop spasticity and weakness in right leg which has gradually got worse and worse over the last 6 years. The culprit is a lesion on my cervical spinal cord.

I asked my GP ro refer me to Odstock medical for a FES and I have to pay for it privately.

It is good but as the calf muscle to so tight it still cant lift my foot pass 90 degrees as my tight calf wont allow it. I can see it would work really well if weakness was the only problem with no spasticity/tightness. On my normal left leg the FES will lift the foot past 90 degrees.

Although using the exercise mode the spasticty relaxes.

Some questions for you

Have your MRIs been clear - brain and spine ?

Have you had a lumber puncture ?

When was the first time you noticed the foot drop ?

I am always interested to hear from people like me with what looks like MS but not.

Thanks

Moyna

Hi Tina,

Gosh, that helps more than words can describe as I never really get to have any element of question and answer with my neuro - which s pretty shocking as I pay privately.

You have definitely helped me understand cramp/spasm and stiffness and I am pretty certain that it is spasticity and it does correlate with the speed related movement - hence the tiring/fatiguing after a few minutes of movement, which is resistance. I have informed the neuro that I do not get spasms as such but he is adamant that the tightness I have in my calf and Achilles is a spasm.

I am very comforted by your explanation of Diazepam and am feeling minded to start taking them this week. I will have to start with half a tablet and build up - but that’s just me and my way of being able to cope with the anxiety I have about taking tablets. I was not particularly concerned about the addiction but more my ability to not be dulled or have personality changes, those aside effects coupled with the more drastic were the ones that caused me the most alarm. I am lucky I guess, as I have never had an issue with alcohol so, the addictive potential is not a concern.

You are very right re your analogies to other diseases and the treatment courses. I really do thank you for taking the time to write - it really has helped more than I can articulate.

Rosey x

Hi Moyna,

Thanks for your post.

Honestly, my symptoms exactly mirror yours but on shorter time scale, 18 months. My only symptom is the right foot (but laely, I am getting, what I can only describe as intermittent writers cramp in my right hand).

As I mentioned, this has been an 18 month plus journey and in that time I have had 4 spinal MRI’s from top to bottom and no lesions were identified - just a few disc issues etc but nothing that they would not expect from a ‘lady of my age’ (charming)!

I last had a brain MRI about a year ago and they found a couple of tiny 2mm spots but indicated they were not in a MS area and more likely due to tumble and falls in my youthful days.

I saw an ortho earlier this year who categorically stated that I did not have MS - he even wrote it in his advice and that my issue was stemming from a bunch of things in my ankle which had now weakened the whole leg due to my lack of use etc.

He wanted to undertake a couple of operations but when I got a second opinion from an ortho nearer to where I live (actually, it was not a second opinion, I just did not want to have the surgery where my parents lived as it made more sense to have it where I now lived for the R&R, so it as agreed, I would identify a surgeon up here), they completely disagreed with the first ortho.

I then went back to the neuro that I first engaged with 3 years ago and whom I had nt seen in nearly 2 years - who was adamant that it ws a CNS issue. I asked him if I had MS. he said yes, I asked if this was a relapse, he said no, I asked if this was progressive MS as it seemed to be getting progressively bad, he said no.

I asked if it was none of the 2 options I questioned him about, then how could he say it was MS. He said (trying to keep calm), ‘if you want me to do all the tests and prove it, we can go down that road, but I have seen this in a number of patients and yes, you do have MS. This is an issue that is neither a relapse or progressive but t it’s caused by the MS’

FYI, in 3 years, I have seen 10 or so consultants from different fields to try and understand what the heck was going on with my body. For the first 18 months, I was totally symptom free, bar the presenting symptoms which cleared up when my exceedingly low Vit D (5) & B12 (90) were augmented to normal levels. No lumbar puncture ever/yet.

Annoyingly, my new GP refuses to do anything until I write to him setting out the last 3 years even thought the xxxxxxx has ALL my records and consultation letters. (I just want to use every expletive that was ever invented and them some right now).

Like you, I cannot lift my ankle past 60-90 degrees and I too have calf and Achilies tightness, so, i wonder what the FES would do for me? I guess this is where the Diazepam comes in, to reduce the stiffness hence making the lift more do-able?

I want my GP to refer me for a FES but my neuro is adamant that I do not need one and that he can fix my issue. My whole leg has become weak and until 6 weeks ago, I was not aware that I could not do straight leg raises (with the right leg) either completley lying down or sitting up.

With 6 week of physio, I can now raise my right leg whilst lying flat (or with a couple of pillows beneath ny head) and raise my leg and hold it to a count of 1,2,3 but my toes claw like an animal when I do. However, I cannot raise it more than 1cm off the bed when I try it sitting up.

Undoubtedly, my whole situation has worsened post botox and I regret having it as I had a lot more movement and confidence prior. Ho hum, you live and you learn and I was reaching desperation and needed to try something.

As mentioned, I have the tightness so am wondering what benefit the FES (if I am assessed to be a good candidate would give). You take muscle relaxants too? If so, in combination with the FES, are you able to walk more freely and has your gait improved?

Was this your sole symptom? Did you have any vitamin deficiencies? Is your diagnosis now TM?

Rosey xx

Hi Rosey,

Glad if I’ve been able to help in some way.

Don’t forget, you don’t have to stay on any drug that is not helping you, or is causing unacceptable side-effects, so generally speaking, there is not much to lose by giving something a try.

I can’t imagine you have been started on a very high dose of diazepam, so there should not be an issue with stopping if you feel it doesn’t suit. Some drugs, including the benzodiazepines, are best weaned-off, if you’ve been on a moderate to high dose for some time. But a low dose for a few days should not present any issues with stopping if they don’t suit.

I forgot to say - I don’t know if you’re a drinker, and I certainly wouldn’t actively recommend anyone self-medicates with drink, but IF you’ve ever noticed your symptoms are relieved after a drink or two, that’s an indication diazepam should help too - because of their similar mode of action, which I mentioned earlier…

When I was not long diagnosed, I used to notice I felt much better after a couple of glasses of my favourite tipple - which happens to be G&T. In fact, it has two active ingredients - the alcohol, which is a muscle relaxant, and quinine (in the tonic) which is often effective against cramps (and now I’m prescribed it).

So if you’ve ever had a couple of glasses of wine, and wondered: “Is it my imagination, or am I a bit less stiff after that?”, it’s almost certainly NOT your imagination, and not just the feelgood effects of alcohol - it’s the muscle-relaxant properties. This is a sign that diazepam or clonazepam would probably achieve similar, only they last longer.

I find alcohol (I’m not drinking it ONLY for that, I promise) wears off after as little as an hour, whereas I can get five or six hours out of diazepam, which does not quite see me through the night, but well on the way!

Up to six hours’ relief is pretty damn positive - especially if you’ve previously been making do with none!

Tina

x

Hi Rosey,

How old are you ? I am 51 and I am told that the older one is the more difficult it is to get to the bottom of things neurologically.

In 1990 I had radiation treatment (neck area) for hodgkins lymphoma. Shortly afterwards I developed l’hermittes which is a sign of inflammation in the neck area. After MRI, lumbar puncture and VEPs I was told it was the radiation and it would settle down. It did until 2005 when I had numbness down my left arm. I was sent for MRI which was clear and the numbness went away. 3 years later I had more numbness, arm weakness and severe fatigue. GP though viral and said i it didnt subside in a few weeks he would send me to neurologist. I recovered to about 95% but then a year later after out for a long walk I began to trip over my right foot. After a few minutes rest the foot was normal again. I visited GP who assured me it was not neurological so I was sent for orthotics etc. Then I started to feel weakness when I tried to run on the spot and kick my bottom wih my heels. The right leg lagged behind considerably. My GP thought this was all in my head and gave me anti anxiety tablets. So I went to a neuro privately without GP referral and he saw the problem immediately. A scan was done - brain was clear but a lesion spine was seen. He said that the inflammation I had in 1990 has led to neurodegeneration. This was in 2011.

A year later I finally got myself into the NHS system. Saw a new neuro who said that my first diagnosis was rubbish as was the diagnosis I had in 1990. He said that he suspected MS and that I had it from 1990. He sent me for another MRI. The week before the MRI I fell on the top of my head. Basically I was in yoga doing a forward bend with my hands under my feel when I lost balance and started to tip forward, As I was standing on my hands I could not get them out to save myself so crash on to the right side of my head and I was concussed for a few minutes. Anyway the MRI scan showed a couple of small areas of inflammation on the top right side of my brain. The consultant was certain that it was MS and when I told him could that be the bad bump I had and he said no as bumps on head would not show on brain. I was then sent for LP which was clear. The little areas on the brain have deminished over the years and he now says that maybe I had an attack of myelitis which has settled. In my opinion the issue on the brain was caused by the fall.

I can walk the dog slowly for a hour and I take baclofen. Other drugs just tended to put me to sleep. Are you reflexes brisk? because that is a sign that there is something wrong with the spinal cord. I cant believe that you have not been offered a LP.

Moyna xxx

Hi, some years ago, I had 8 botox injections in each leg for stiffness and pain. OMG it was soooo painful and to top it off, I got absolutely NO relief whatosever!

pollx

Hi Moyna,

Wow - you HAVE been on a journey! I’m a little younger - this all started in my late thirties. Lots in common with you and lots of diagnosis from consultants that firmly felt my issue was MS/not MS/purely orthopaedic etc etc. I have shuffled between private & NHS also - and am still none the wiser.

I now almost don’t care what it is, I just want to be able to walk a little and claw back some level of independence.

I am really pleased that you can walk up to an hour - that’s my goal, heck, I would take 15 minutes at this stage. I am off to see the podiatrist that I first saw when this all started 18 months back - he swore that there I had compartment syndrome (the exertional kind) as in conjunction with all the stuff I explained (mirroring your journey), that foot is always ice cold.

I just received my Ossur Foot Up in the post tonight and I am excited to see if that makes any difference - I get afraid to hope too much as most of the gadgets and gizmo’s I have bought over the year, just leave me crushed and are starting to fill up the house. I have decided to try the diazepam also over the weekend and hope the Foot-Up and Diazepam, give me back some freedom & help me get to where you are.

Having been in the same boat as me, how long did it take you to work up to being able to walk for an hour? Is it definitely the combination of the muscle relaxant & FES - i.e. you need both and not just one?

Silly question, can you ever wear a heel now - at least for a nice occasion? I don’t mean an ankle inverting stilletto, but just a nice pair of shoes with a block heel at least? (I only ever wore heels as they helped my really flat feet but since the decline over the last year and a half, I just cant but have a dream that one day I could, for at least a couple of hours any way. With Xmas approaching and all that (why aren’t there any evening dresses that work with flats??)

Rosey xxx

Hi Rosey

I’m stunned that although you cannot dorsiflex your foot, and it’s been the same for some time, your neurologist thinks it’ll get better. I had the impression that once you get foot drop it’s pretty unlikely that it’ll go.

If you’ve found that a foot-up helps, then I suspect it’s likely that FES would also work, and more effectively.

You have to get a GP referral to (for eg) Odstock, even if, like Moyna and myself, you end up self funding (it’s a postcode lottery as to whether you can get it on the NHS). I would suggest you gather some information about FES, eg info downloaded from the Odstock website, take it to the GP and ask to be referred to Odstock. It depends where you are in the country as to how easy it is to get to Odstock, they’re based in Salisbury but do clinics around the country. Give them a call and talk about how you go about getting a referral maybe? By the way, if you find you have to self fund, the Odstock FES is fairly expensive for the first year (£300 per appointment and at least 5 appointments in the first year), but pretty reasonable thereafter (usually 1 appointment per year).

Personally, I can still barely walk 10 metres, even with FES and a walker, but I persevere because its better to do that little bit of walking rather than none. This is because I have significant core problems, plus bad proprioception in the non foot drop leg, as well as virtually no upper leg help with the foot drop leg! Without FES I can’t walk at all, moving my right keg is virtually impossible.

Good luck with it.

Sue