First suspected diagnosis: 2 years ago, not complete, no relapse that I know of.
Symptoms: uncontrollable ankle, knee and decreased balance making it very difficult to walk.
Therapies tried and failed: Baclofen, Tizinadine, paleo diet, reiki, bowen.
So I have had a suspected MS diagnosis from the NHS 2 years after which they gave me Baclofen. This was disastrous and made my symptoms worse. Then I had a botched ‘week’ of tests at Queen’s Square Hospital in London after which I was given Tizinadine. This was even more disastorous than the Baclofen and my symptoms got a lot worse.
Then as the NHS was so disastorous I went to a dr at Harley street who had me do an extensive blood test (8 pages of results) and put me on a Paleo (Ancestral) diet with 12 food supplements which I have largely given up on after a year. 12 months later an no difference… I asked the dr about physio and possible injections (B12, Steroids or anything) but he wasn’t helping me with that.
Now I started to take some homeopathic supplements, had 1 yoga session and 2 physio sessions. The problem with the physio is that she lives in Henley which is an almost 2 hour drive one-way.
For that reason it would be good if someone knows a good physio in (SE) London and especially someone who can do home visits. Also I’d like to try a chiropractor and possible accupuncture.
What else can I try to live my life again? Are there organisations that can help me sort out this mess? Ask me anything and I’ll try to answer.
My honest answer is that the best thing you can do is to cut out the alternative remedies, go back to your GP and ask for a referral to establish for sure what is causing your symptoms so you can find out what the best treatment would be.
The fact that baclofen and tizanidine both made your problems worse may be an important clue regarding your diagnosis. What did your consultant suggest next? Have you been to a spasticity clinic? Is it actually spasticity that is your problem?
While you’re at the GP’s, ask for a referral for neurophysio too - you shouldn’t be paying for physio and you should be seeing one who is trained in neurological conditions. In fact, this might be the best first step because a neurophysio will be able to say what the problem is, which might help the GP to know who to refer you to.
Trying anything and everything is only going to cost you a lot of money as well as heartache when things don’t work because they won’t: alternative therapies have no effect on MS. Unfortunately, there are plenty of people out there who will happily take your money despite knowing that they can do nothing for you
I think you need all of that stuff out of your system so you know anything you experience is the real problem you have.
At that point I would be going to the gp asking for an appropriate referral be that to a neuro or neurophysio. If the gp feels a neuro is the best place to start then you could if you wish pay privately to jump the queue. Many of us have done that and then gone back into the NHS for the tests or services eg neurophysio.
I’m sorry if any of this comes across as harsh,but if your symptoms are that bad that you have trouble walking it needs looking at again and there are many other tried and tested medications that could help and give you your life back.
You say your doctor didnt want to know when you went back re physio and B12 injections,was that your gp or the Harley street one?
The GP initially referred me to a neurologist at Queen’s Square (one of the best places on the NHS they said) and the neurologist was the one giving me the medication which very quickly made my condition a whole lot worse (twice). Also because of that (many more mistakes were made) my trust in them is very low.
I haven’t been to spasticity clinic eventhough the NHS thought that is what’s wrong with me at first. They haven’t referred me to a neurophysio either but then I haven’t been to the NHS for a year-and-a-half. The thought of a neurophysio does sound good though!
Tomorrow I’ll have a first (and free) session with a chiropractor (private) and I am quite aware that he may not be able to do anything but it’s worth a try right?
Do these NHS neurophysios do home visits that you know of?
Don’t let one (albeit long!) bad experience put you off the traditional route. Queen Square is definitely one of the best neurology departments in the UK, but that doesn’t mean that they get it right every time.
Unfortunately, the way to get the best out of the NHS is to know what to ask for. If you don’t ask, you don’t get (mainly because they assume you’re OK). So you need to ask for a referral to a spasticity clinic and to neurophysio. A second neuro opinion also sounds sensible. If you are willing to pay for the neuro appointment, you will probably be able to see an MS specialist within a couple of weeks (approx. cost £150-£200). Don’t just see anyone though, use the “Near me” function on here to get a name: only well respected specialists have been listed on here.
Whether or not a physio makes home visits rather depends on where you live. I go to my local health centre for mine, which is no hassle as it is only a 2 minute drive away, but my friend who lives just a couple of miles away gets home visits because she’s in the neighbouring borough and they are set up differently.
MS nerve damage cannot be reversed by a chiropractor, dietitian, oestopath, reiki master, etc. There is no magic cure
Karen and all the others are right. I have spent a fortunate!
You sound a little like me. I had an attack exactly 4 years ago. wobbly legs, weak arms numbness etc. Doctor put it down to stress - definately not neuroligical he said. I went to see a chiropractor (who diagnosed a trapped nerve). I attended 2 times per week for about 6 weeks costing me approx £250. No improvements, although several weeks after I finished I did start to feel 90% of my old self. Then about a year later I started to foot drag after walking the dog for about an hour. Doctor sent me to podiatrist and I spent £250 on orthotics. Walking began to become more difficult and I tried acupuncture - spent approx £300 on this over several weeks! Then tried oestopath who diagnosed compartment syndrome in leg - spent £250 on this over several weeks. Went back to GP who still refused to send me to neurologist so I rang private neuro and made an appontment myself. After MRI, LP etc he saw one lesion on neck and diagnosed radiation myelopathy from treatment I had in 1990! No treatment given.
I then saw a private quack who did all sorts of random tests (hair, saliva, urine and poo!) costing in and around £500!
Following this he advised me to get fillings removed, which I did at a cost of £2000. I then had chelation done to remove heavy metals (£200). He also started me on serious amounts of vitamins etc (more money)
At this time I started hyperbaric oxygen therapy at an MS therapy centre. This cost £30 per week (only £10 if I had MS) and I did this for 18 months!
Saw neuro physio who gave me exercises and referred me to spasticity clinic thinking that spasticity is my main problem. She reckoned botox would really help me. Saw new neuro there who wanted to rediagnose me. Had MRI, LP etc all repeated (on NHS this time). Still only the one cervical lesion. He thinks that is either benign MS or 4 years ago was an attack of transverse myelitis. He put me on baclofen (30mg/day). The spasticity is no better although I think the baclofen may have stopped it getting worse.
Anyway the latest is that I saw the first neuro last weeks and I am going to try a chemotheraphy drug which have been shown to help patients with radiation myelopathy in the USA. Only problem is that as it is not an NHS recognised treatment I may have to pay £5000 for it. He is going to try to get it on NHS for me.
I am too frightened to add up all that I have spent in the quest of getting better!
Thanks Moyna! Your message gave me a lot of strength. I’ve spent 1000s already and it doesn’t do much if anything. I’ll make a new appointment with my (NHS) GP after over 2 years and discuss options.
