Forum

Haven't got a clue what to do next!!!

Hi everyone,

I last posted back in December after a clear MRI and being told I had a low normal B12 count. Was discharged from neuro - wasn’t given injections just supplements and my issue is that I feel no better! :0(

I have now had these symptoms since July - woke up one day with dizziness and pins and needles soon followed after having a shoulder arthroscopy. I now have a constant dull headache every day which never really goes, pins and needles in arms, legs, hands, feet, back and constant dizziness. It’s not getting any worse but it’s not improving either. Blood tests have all been clear and B12 is now 322. Doctors say they can’t find anything wrong with me and I’ve seen a fair few.

GP has said maybe fibromyalgia but from what i’ve read I should be in more pain for that! I just feel like I’ve exhausted all avenues and that no-one is interested.

Any help or advice as always would be appreciated.

Beth x

Sorry, I’m not sure what to advise other than perhaps asking for a referral to a better hospital, e.g. the National Hospital for Neurology and Neurosurgery in Queen Square, London? Tbh, I’m not sure how much joy you’ll get if your tests are all clear though - it leaves so little for them to work with :frowning:

Hmm…

Has anyone explored the possibility of you having had some weird reaction to the anaesthetic for your shoulder op? Is it even remotely possible?

What about migraine? Has your GP tried you on preventative meds to see if they improve your symptoms?

Is something like Meniere’s possible? (I don’t think that it causes all the things you list, but I could be wrong.)

I would guess that you have two options: 1) make sure you have a GP who will help with your symptoms (are you on meds?), wait for something to change and then ask to be referred to neurology again; 2) find a GP who’s willing to experiment with meds, tests & referrals to try and work out what’s going on. Option 2 is going to be tricky - budgets seem to dominate everything these days :frowning: but it might be worth trying to find someone?

Sorry I can’t think of anything terribly constructive :frowning:

Karen x

It’s a nightmare Karen to be honest… I’ve even thought about M.E but I don’t seem to fit the bracket for that properly either!!

When I’ve suggested it’s anything to do with the anaesthetic thats been completely thrown back at me as out of the question. The only thing I have had for a long time (Probably for about 10 years) is issues with my neck - pain, clicking, tightness etc although I’m not sure that would give me all these symptoms as they are literally from my neck downwards and I have had a burnt tongue feeling although that comes and goes.

My headaches are more like a hungover feeling which is permanently there and my pins and needles are always worse when I’m sitting and lying down - feel better when I’m up and about apart from the weird off balance feeling. I’ve just changed GP. This one is the one who suggested fibro and gave me amitriptyline - Haven’t done well on that at all as it’s just made me feel really sick! My only other thought was a circulation issue but I had an ultrasound on the arteries in my neck and they found - guess what - nothing!!

Am I correct in thinking if it was MS - the tingling doesn’t appear all over the body at the same time, it would be just here and there? I’m even thinking about an Osteopath to see if I’ve got anything out of place!!! I know I probably sound a bit neurotic but coping with this since July with no answers and the doctors saying I’m just stressed is hard work!

Thank you so much for replying.

Beth x

Circulation or blood pressure sounds very plausible to me, but then I’m not a medic. Why not buy a bp/heart monitor (you can get them quite cheaply, under £20 I think) and take readings regularly and note your symptoms at the same time (concisely)? Always take the readings in the same way. Do both arms too. Don’t worry about small differences, cheap machines are unlikely to be very accurate, but if there are large differences, then see your GP with the diary. This is all assuming that your GP has given up - obviously it would be better to see someone who knows what they are doing than do this yourself! MS tingling can be from the neck down - it all depends on where the lesions are. If an osteopath can help, then why not see one? If it helps, it’s affordable and it does no harm, then most things are worth trying for relief from symptoms. Do be careful if you start trying new things though - there are some real charlatans out there who claim to be able to cure all sorts of things, but in reality are either deluded or just after your money :frowning: Kx

I have had tingling in my face but that comes and goes. The most consistent is in my legs. . . my arms and hands and back all come and go to but Im always tingling somewhere!!! The worst part for me is the headache and dizziness and feeling off balance! When I had my neuro exam, they said there wasn’t anything really pointing to anything. . . A bit of a wobble on the romberg but no sensory issue and my reflexes were fine. I know you are not a medic Karen but you offer tonnes of fabulous advice - could this all be ‘in my head’ so to speak and the fact that Im actually worried sick about what is going on actually be doing me more harm than good!?

Anxiety definitely leads to people experiencing more symptoms. I know it’s hard, but you do need to stop worrying so much - if it was something serious, at least one test/exam would have been positive.

Why not ask your GP for something for the headache and dizziness? Once they are better controlled, you may find you can get on with things sufficiently well to ignore anything else. If your GP isn’t happy to give you anything, you could always try a travel sickness med or an anti-histamine - they might help.

Kx

Why there’s no answer for this.