help......

Hi, I’ve arrived here via a long journey in a bid to try and solve what the doctors cannot. I am a 47 year old male who is a bit overweight but quite active. For the best part of 8 years I have been struggling with a number of symptoms that have grown both in number and severity. I nearly broke my neck in a swimming pool some 12 years ago and I initially thought these symptoms were attributed to that. I started to get an extremely sharp pain shooting down my left arm from the armpit to the end of my thumb and forefinger which could last up to about 10 seconds at its longest (I call it the stinger and it just about reduces me to tears). I still get this to this day but thankfully on a less regular basis. At the same time, I also started getting an electric shock like feeling at the back of my neck, l/h side from which I still suffer, the two don’t appear to be linked. I also started getting really tingly fingers on both hands which was diagnosed at the time as carpal tunnel for which I had steroid injections and that did help. During all of this up until present day, I have an increasing number of all sorts of shooting, stabbing, gnawing and aching pains all over my body, along with muscles that twitched and twitched seemingly forever. A diagnosis of benign fasciculation syndrome was given by a neuro. A lot of my pains ‘appear’ to be joint related and I have been investigated for rheumatoid arthritis and psoriatic arthritis (my mum has psoriasis and one of my twin boys has psoriatic nails) but on x-rays there is no evidence of arthritis. I have had an MRI scan of my spine from top to bottom with no visible evidence of excessive wear and tear (I also get sciatic type pains) except for a couple of ‘dry’ discs lower down. I started taking ibuprofen when this all started and ended up with a bleeding ulcer so my doctor put me on Co-Codamol 30/500 which I now take religiously 4 times a day. In addition, I am also taking amitriptyline 100mg at night to help sleep etc. I had some kind of a breakdown 2 years ago trying to cope with all this, (along with a stressful job) and was prescribed Duloxetine 500mg for depression. This seemed to have a good effect on my pains as a bonus. After about six to eight months I decided to stop taking the Duloxetine as I felt happier but as I was weaning myself off, the pains returned with a vengeance. To this day, my doctor has no idea what might be causing all this so I just blunder on from day to day taking the tablets and trying to keep a lid on it. The pains are getting worse again, more of the stabbing shooting types and my whole body feels like it has this background pain that is sometimes just exhausting. I also have a feeling of warm water running down my legs(sometimes).Come the weekend, I drink too much alcohol as this just numbs everything for a few hours and I get a bit of respite, but I hate doing it because I know it’s not good for me. So, if I’ve arrived here by mistake and none of these symptoms have anything to do with MS, please forgive me. Any helpful comments would be greatly appreciated.

Gary J

Hi Gary, and welcome :slight_smile: Neurology is complicated by the fact that a lot of conditions cause very similar symptoms so, while your symptoms are found in MS, it could be any number of things actually causing them. I’m a bit confused by your meds in that I wouldn’t have thought it was standard practice to prescribe two antidepressants for two different reasons at the same time, but then I’m not medically trained so I could easily be wrong. Then we have the heavy dose cocodamol although your pain worsened when you came off the duloxetine which suggests it is neurological and therefore wouldn’t respond too well to cocodamol. Considering all that, I’m wondering whether the cocodamol actually does anything. What happens when you forget a dose? And if you are taking it and amitriptyline, but your pain isn’t any better or getting worse, surely something else would be more effective? The full spinal MRI should have ruled out damage from your swimming accident as a cause so the other obvious things to consider are a brain MRI and blood tests. So, if I were you, I would be asking my GP firstly for a review of my meds and for a thorough battery of blood tests (some vitamin deficiencies could explain a lot of your symptoms) and then, depending on the results, for a referral to get a brain MRI and/or neuro referral. I suspect that getting on more appropriate meds will make your life much easier. Good luck. Karen x

Hi Karen,

thank you for the reply. I agree with your comment “it could be any number of things actually causing them” which is why I am very frustrated by not knowing. In answer to your question “What happens when you forget a dose?”, the pains I get just feel worse, hence me taking religiously. You might be right about something else being more effective and I shall make a note to ask my GP about that.

I have had a shed load of blood tests with nothing obvious to report and as for vitamin deficiencies, I’d rule that out as my missus is a great cook and provides us all with a balanced and healthy diet.

thanks again for taking the time and your input.

best wishes,

Gary x

Re the vitamin deficiencies, some people have medical conditions that stop them from ingesting or producing enough despite their diet so it’s definitely worth having the tests done, just in case. Kx

nearly a year on and things have moved on…(he says tenatatively)… not much happened between april last and october, except me just blundering on until I hit rock bottom. I had lost a lot of the feeling in one of my toes (right foot)and was getting really sharp pins and needles in the bottom of my left foot. I was so depressed that when I went back to my GP, she prescribed an extra dose of the duloxetine, so 2x500mg morning and night. I must admit, it took the edge off but I was still suffering and went back to see her to let her know how it was going on double the dose. Very unhappy face still… then she asked me if I had ever tried Gabapentin? No, I hadn’t. I started on a low dose and have built up to 600mg 3 times a day, and I have to say, it’s making a difference, in a positive way. The horrible sharp stabbing pains have abated to nearly none. The pins and needles haven’t gone though, the whole of my left foot and halfway up the calf are buzzing all the time, although not uncomfortably so. I’ve also got a real funny one on the top part of my tummy, just a small patch that really buzzes, more so when I lean forward. I still get the warm water running down my leg feeling and a similar feeling in some of my fingers. Anyway, my GP has referred me to a ‘special’ clinic in Bath hospital where they deal with ‘weird pain’ (her words). I’ve had a letter today from them and a questionnaire asking me ‘when were you diagnosed with CFS/ME?’ and then a whole bunch of questions about how does my CFS/ME affect me etc etc etc. Now I’m really confused as I’ve never been diagnosed with that, I know someone who has it and it certainly isn’t what I’ve got, unless I’m missing something? If anyone has taken the trouble to read this and think they might be able to make any sense of it, please, fire away…

Hello Pod

Have you had any discussion with your GP about a neuro referral and a brain scan? seems the obvious next step to me.

I personally would want to know if it was anything neurological.

I’m not quite sure what else to say really. Your GP doesn’t seem to have done much, since your last conversation with Rizzo in April.

xx

Hi Blossom,

I haven’t broached the subject with her yet. I’m (stupidly probably) hoping she will realise that the way forward would maybe to do just that. I have suggested a number of things in the past to my GP after swotting up on the web and it’s starting to get embarrasing, even though she is quite receptive. She hasn’t done an awful lot, mainly because I refuse to let things get the better of me, (I’m really stubborn) but it’s starting to get very hard to carry on as normal. I’ve steadily put on weight and lost a good deal of the strength and stamina that I used to have…

I have seen a neuro for the fasciculations. He was very nice, told me it wasn’t ALS, it was BFS and there was nothing they could do for that. It was quite a while ago since I saw him and the subject of MS never came up. I’ve been hunting this down for the best part of 6 years and it has led me finally to this. I’ve read quite a few articles about MS and apparently, amongst the list of symptoms is chronic pain, for some people, and I can’t work out why none of the professionals I’ve seen haven’t thought it could possibly be MS, hence the doubt in my mind about asking…

Thanks for taking the trouble to reply. I’ll update this if I get any further…

xx

Your not stupid Pod but you are procrastinating. Go back to your GP and request a referral to Neuro in order to rule out Ms or any Neuro type condition. Some GPs are happy to let patients linger on…saves a bit of money…Ooops!! There’s me being cynical lol :wink: Good luck :slight_smile:

are you telling me off…?

sorry, I’m only pulling your leg… :slight_smile:

I know I am and I should ask… I will ask…

what’s to lose?

you might be right about some of them, cynicism aside… :wink:

thank you :slight_smile: