I’m a probable MS diagnosis but I posted here as I wanted the wealth of your experience. Over the last few weeks I had some of my L leg numbness and L thumb numbness and pins and needles creep back. i don’t tend to pay too much stress on these as a small blip in your health / over tiredness can cause pseudo flares. Anyway I started my period on sunday and was feeling particulalrly worse but put it down to time of month as I know some of my symptoms can worsen then.
But over the course of the day I developed the hug on my left side (it went round the L of my abdomen all the way to the middle of my back and was a very tight constricted pressure feeling). This got worse the next day and I had really really bad burning pain - my skin felt raw and sensitive and if my partner touched me or when he put some cream on my back I screamed it was so painful. This has extended up the L side of my abdomen and just under the shoulder blades on my back.
I think my stomach is also playing up as since monday I get full very quick and if I eat too much I’m in extreme pain and have pressure on the L side of my tummy (last night i had one sausage and four spoons of mash - ended up waking up at 1 starving). My bowel also isn’t right but I don’t know if thats because of my eating - my stools are loose and I go a tiny bit but many times (I’ve been thrice in the last hour - blushes).
I’m trying to avoid big meals and trying to stretch wear feasible. I’m using heat pads as the pressure and heat confuse my body into not noticing the burning pain.
I’ve had the hug before but I’ve never had any issues eating or bowel wise with it. Does this sound familiar to anyone - does anybody else get this? I’m not on any meds at present as aside from lassitude Jan - March this year I’ve been generally ok. Is there anything else I can try to do?
I’ve had issues with my neuro as the first MS neuro I saw was terrible. I get referred to then a general neuro who referred me to a lovely MS specialist. This MS specialist I saw end of september and was meant to see again in 6months but he left for a sabbatical in feb. Since then I’ve been having to chase the hospital to find out what is happening with my appointment and who I will see. They’ve been useless. 2weeks ago I got to the point where I thought waiting 4 months for a review that should have been a 6 month check up is riddiculous (I work for the NHS and know this is not good enough). So I felt bad but put in a complaint. I have now been offred a review on the 26th Sept which I have accepted with what I have heard is a good MS specialist (crazy I will have waited 1 year).
I am going to see my GP in the mean time to at least make them aware of the whole service issues problem I had (I’m sure there’s lots of poor people who potenitally are worse off than me that haven’t been seen) and get the symptoms/ problem documented.
I’m possible MS as my MRI showed non-specific lesions and all other tests were normal. I never had a LP as the conclusion was if it was positive I would only be probably MS and no DMD’s as even though I’ve had 2 episodes they are not deemed as ‘clinically siginifcant’. So getting the new issues documented is important as it may/ may not sway decision on DMD’s if LP positive or they may decide another MRI is needed as the last one is over 1 year ago (spine one is longer).
Thank you for reading
Reemz
X
Hopefully I get some help/ recover from these symptoms.
You sound like you are having a tough time of it at the moment but I hope it starts to improve. All of your symptoms are very familiar to me and I’ve been diagnosed for nearly 8 years with symptoms for longer than that. I would say don’t stop eating or drinking as these will only compound the bowel problems and try to move as much as possible although I appreciate it’s not that easy. You could try asking your GP for drugs to stop the neuropathic pain, burning, itching, pins and needles etc they often prescribe a low dose of antidepressents NOT for depression but because they work against the neuropathic pain-might be worth a try? Do get everything you talk about documented and push for a LP as I only had one leision but the LP results were conclusive enough to say MS.
I do hope your new neuro is helpful. The only other thing I would suggest is reflexology and vitamin d3 both I use and I’m sure only help.
It’s reassuring knowing I’m not alone in what I’m experiencing (though I wouldn’t wish for anybody to have these symptoms).
I’m trying to stick with eating little but often and keeping my food quite simple so hopefully easier to digest. The liquids harder as a glass of water fills me so i’ve gone with soups now in the hope it’s healthy but still some liquid/water.
I do yoga regularly and usually salsa (I’m in no state for salsa at the mo though I love it) and short runs (I can’t do the five miles I was doing three years back anymore). I’ve got a very basic dance video I’m trying to do to keep moving. I’m not great and some of the movements just aren’t good with the hug but I’m determined to stay fit and keep mobile. I have my wedding next year so want to be in shape and after my lassitude earlier this year and issues last year this march/ may has been the first time I’ve been able to do other activities apart from yoga and not be in pain or have to stop. I hadn’t realised how much I’d missed all the other things till I started them again and now I don’t want to have to stop if I can help it.
I have a GP appointment in two weeks so will discuss meds - last time I had the hug it was the same apart from gastro issues. I couldn’t get seen by a GP at the time and I was meant to be off on holiday. So I took a diazepam (I had two or three left from when I had a neck spasm). Just one made me 70% better and helped the burning etc so maybe something like that or similar might be useful (though I know with some of the meds like diazepam you have to be careful).
I’m waiting to see my neuro re the vit D. I was taking it as my levels were low but was advised a reducing course via GP which i finished Dec. Now I’m not sure if I should be taking some in light of possible MS.
Getting things documented is why I’ve pressed to be seen by neuro and complained. I think if I’d gone symptom free this year I would have been less inclined but I have had at least 2 distinct things happen (lassitude and hug and potentially a third when I had nausea and motion sickness maybe).
