Anybody with Dystonia?

Foxy16

neckproblem wrote: »

No its called The National UCLH and his name is Dr Mark Edwards. I will have a look at Kings Hospital aswell though. I find the spasm starts to tighten my voice box and front neck muscles then the back of the neck stiffens until I can 'release' the spasm and tight muscles in the neck.

I had never heard of that one before, but it is solely for neurological problems, so should be good. I do think if offered you should try botox, botox is injected into the offending muscles causing them to relax, so if they work the stiffness and spasms should be under more control. Don't know if you know this, but the basal ganglia which controls these muscles are sending the wrong signals to the brain, this is what is causing.
the dystonia spasms. I did know a lady with cervical dystonia, before she had DBS, hers was horrific, constant extreme shaking of the head, I saw her after surgery, and what a difference, a complete success for her. But it also takes guts to go through this, due to what can go wrong during the op, something I could never do.

If you are claiming ESA now, then you should still get this if you lose your job. But do NOT resign, your employer will have to let you go through ill health. Again, please try to get to see a welfare rights advisor, they will help you fill in any forms and advise you as to what you are entitled.

neckproblem

I did have botox back in May but it only worked (not 100%) for a week but when I started doing basic lifting the spasms got stronger and within 8 days I was back to square one. They have offered more botox (Im guessing the first injections are low dosage?) But even though they stopped working after a week I had to wait 3 months for next injections so I decided to try chiropractor and delay my next injections but like you say its worth pursuing when my next injections are due. Im just concerned that botox could wear off as the body gets used to it so say in a few years back to square one.

Its a shame there are no tablets that help, you would think that they can make ssri to control the brain but not the basal ganglia. I wont rule out dbs but doesnt this require constant treatment? Or is it a one off operation. Ill speak to cab office once I get a letter thanks

Indie_Kid

neckproblem wrote: »

Im just concerned that botox could wear off as the body gets used to it so say in a few years back to square one.

I was told this would happen, yes. I was offered the injections and was later told no because the injections are in the neck and would cause swallowing problems.

Parva

Indie_Kid wrote: »

I was told this would happen, yes. I was offered the injections and was later told no because the injections are in the neck and would cause swallowing problems.

Both of you are correct. I lost my whole right leg and much of my pelvis to cancer in November 2011 but I was already feeling the effects of dystonia prior to this.

Whether the bone cancer started the onset of the dystonia or not I will never know, I only know that I was in a lot of pain with my right leg (thanks to the bone cancer) and I had realised that something was wrong with my neck prior to this.

On to the dystonia, I knew something was wrong and could feel it getting much worse after the amputation of my leg. On visiting my doctor (a new doctor, I had dispensed with the old doctor due to legal proceedings) he suggested physio, I suggested a neuro surgeon given my Google search of the condition. Fortunately, I was proved correct.

Having had treatment for 12 months now (3 monthly injections of botox) I can safely say that this is a damned long road. Apparently, we'll never be better than 70% 'cured'. Having completed 12 months I estimate that I'm at 20%. I had my botox injections 2 weeks ago and feel little relief but the irony is that I really do feel when it's worn off which is always two weeks before the next 'top-up'.

It is also true that administering the botox in the wrong spot will prevent swallowing and entail a 3 month hospital visit, definitely something to avoid!

For anyone suffering from this I really do feel for you, it really is quite painful at times. It's made even worse for me with just one leg as going on to crutches makes the brain work harder and the head turns even more, not ideal on crutches! Regardless, I feel for anyone with this condition.

neckproblem

You sound like a very brave person much respect to you. I must admit when I first went to the doctor they just put me on muscle relaxants and I continued working for 5 weeks until the spasms became too painful and I was sent home from work. My doctor signed me off but didnt organise any investigation I was told that for an xray on my back is only for people who have had car accidents. I had pain in lower back and neck muscle spasms. I had my partner come to every doctors surgery visit and she was horrified when another doctor suggested I buy and read a book called 'treat your own neck'. Due to my doctors surgery not organising anything and quite happy to just sign me off work I went privately and had MRI scan which didnt really show much apart from wearing of the discs and narrowing of the exit foramen.

Are you also aware that many of these neurologists will see you on NHS but waiting time is about 6 months but if you pay privately the same neurologist will see you within weeks.

neckproblem

I forgot to say, did any of you see the episode of embarrassing bodies where the guy had dystonia (although he didn't seem in much pain just his neck always veered to the side). Anyway its worth watching I can post a link here if you cant find it. Basically his condition improved vastly after hypnotism so thats another road to try but yes it is a slow process in finding a solution as each person responds differently to treatment.

GwylimT

My wife has it, she has regular botox injections and she often takes muscle relaxants in between if she has a particularly bad patch.

Foxy16

Neckproblem, the 1st botox is a low dose, and will be increased gradually. There are several different types of botox they will try, if immunity takes place, but again some have been having this for over 20yrs and not become immune. I believe the reason I became immune was due to being injected every 10wks, that is too much, recommendation is 3 monthly, this was by a neuro who had been practising for years!!!!! who also told me that it was not an illness, but a habit I had got into, also due to botox not working, told me I was wasting NHS money and struck me off!!!!! Thankfully this nasty man is now retired, and my present neuro is understanding and talks to me.

There are quite a few muscle relaxants, due to high blood pressure I could only try baclofen, which unfortunately did not work. As far as I know once DBS surgery is done, the only treatment after this, is to adjust the settings and keep a check on it, nothing else is needed, it is a reversible op, but can go dreadfully wrong.

Yes I saw that programme, but what they did not show, was the fact the hypnotism did not last long. My neuro got asked by everyone if they could have hypnotism, me included, lol. He was not convinced by this and said it would have to be someone who knew a lot about dystonia.

There is continuing research being done, and in the past year a couple of new treatments (dry needling is one), are being tested. I just hope one day something can help many more with this condition.

neckproblem

Well I get an appointment in the first week of September at that National Hospital in London to see their Dystonia specialist, so will let you know how it goes.


I have an appointment for botox end of September aswell, so will most likely not delay that again and give it another chance, but the chiropractor has helped the pains in my back and my neck moves more freely, but still hasn't stopped the spasms (it's like a dystonia storm your mind gets blitzed and it's like you have to fight it sometimes you win sometimes you lose and muscles go crazy).


Let's hope someone finds a miracle cure, as it does seem to affect quite a few people around the world. I noticed you mentioned blood pressure, and I was on Robaxin (8 a day) and my blood pressure went almost to 'hypertension' even though I was perfectly happy in myself, but since I've come off them its about 124/82 so the medicine probably caused that?

Parva

It really is a nightmare condition to have, and especially for me personally with only one leg to stand on (no pun intended), it really does make use of crutches incredibly dangerous, indeed I have already suffered both bones broken at the right hand wrist due to going out onto a slippery path on crutches and not being able to look forwards properly.

My botox doses have been increased on every visit (once every 3 months) but I still find little relief from the constant pain. Indeed the muscle at the left hand side of my neck is now so prominent that the nurse giving the injections notices it immediately. The nurse suggested that I phone her early September before my next 'top-up' and if there's no significant improvement I'll be seeing the neurosurgeon again. Indeed, there has been no marked improvement.

The most annoying thing is waking up on a morning, I'm normal! Whilst I'm in that drowsy stage of waking there is no muscle activity and it feels fantastic! Of course, within minutes of coming around and waking fully we're back to the constant battle with the bloody thing. In many ways, this medical condition has been more debilitating than the loss of the leg. My middle name should have been 'lucky'...... <NOT>.

Also 'neckproblem', good on you for persisting and getting diagnosed. I lost my leg due to a previous doctor not realising he should have sent me for an xray after YEARS of me complaining of pain. When I went to my new doctor and complained about my neck issues he wanted to prescribe physio (much as my old doctor did for the leg that had bone cancer)! I told him that I had Googled my symptoms and Cervical Dystonia (or spontaneous torticullis or whatever it is) were what I was suffering from he asked if I would prefer to be transferred to see a brain surgeon, YES PLEASE! I know that Googling health issues can be completely wrong but in my case it got me the referral and confirmation that I needed. Whether the new doctor was mindful of the ongoing lawsuit with the old doctor and had any bearing on the outcome I don't know but at least I got to the heart of the problem quickly this time.