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Need help from anyone!

hi all

I need some help as in really struggling right now.

A quick background is , 30 year old male, no history of any neuro issues whatsoever, then in December it all started -

December - lhermittes

Jan - hand tingling And then foot tingling

Feb - lhermittes starting to subside but added burning feet and odd right arm

march - odd muscle tigjtness intermittently

April - hand tingling full on, left arm pain too, legs getting crampy and today stiff and heavy so I couldn’t walk!

im obviously terrified by the rate of this and whether is ppms or worse malignant Ms etc, I had an mri that was clear in Feb, normal neuro exam jan and feb, but all these symptoms in such a short time terrify me, I’ve had a cold the past two weeks, I’m not sure if that has caused a lot of it or not, I don’t know what to do or say, Does anyone have any advice? Could this be long relapse? Two relapses or just progression? It seems all so fast!

I forgot to add I get the achey leg pains in both legs, from calf up to buttocks and it moves all around

Hello,

Can I ask what your Neuro advised you? You say you had a clear MRI and clinical exam, which is great news. Will you be having any further appointments?

Sam

Hi samantha

I’m seeing him again on Monday evening to tell Him about the worsening symptoms, he thought a lot may be anxiety etc

its the leg oains that worry me the most as I know they’re classed as a bad prognosis, that and anxiety can’t cause them, plus they’re all over legs which worries me how big the problem could be

hi kris

you’ll be told that anxiety can make everything seem worse, which it can to an extent.

your cold may be exacerbating your symptoms - infections often cause pseudo relapses.

your neuro can help by suggesting which neuropathic pain killers can help.

gp’s don’t like to start us on anything unless it is on the say so of the neurologist.

your neuro writes to your gp and mentions meds that could/should be prescribed.

mindfulness meditation has been a big help to a lot of us.

it helps with pain relief and anxiety.

give it a try. your gp might know of classes in your local area.

other people have found the resources online.

also make sure that your vitamin D levels are high enough.

magnesium is a wonder supplement which eases cramps and spasms.

B12 injections have helped me - best being recommended by a neuro because otherwise your gp might be reluctant.

good luck

let us know how you get on

carole xx

Hi thanks Carole

ive been taking 5,000 - 10,000iu of vitamin d3 a day, I’ve read somewhere that it can cause cramps and leg pain etc? So I think I’ll reduce that for a little while and see how I feel. It almost feels systemic becaue it’s both legs same places things, hamstrings and up to buttocks it seems like a lot in one go that’s what’s worrying me! Is it a rare progressive variant!

also I read incomplete recovery, being male and pyramidal so spasticity are a poor prognosis! I’ve only had this start nearly 4 months ago and I’m falling apart already

as already said magnesium is brilliant for cramp.

you can get magnesium oil which you can massage into your legs as well as taking as a supplement.

it works well with vit D and calcium, in fact they should be taken together.

if it’s any help i have numb hands and feet which have tingled all the time.

my neuro told me that i have mainly sensory symptoms and these have the best prognosis.

so take that on board and try to stop worrying.

good luck with your neuro on monday

carole x

Hi thanks again carole

iwas feeling better until this week when my legs have become stiff and I’m struggling walking far and now some urinary frequency issues, it is so much so early on and it’s terrifying me now

hi kris

there are meds for stiffness in the legs - ask your neuro or gp.

baclofen is probably the one that you need but it makes me drowsy.

as far as urinary frequency goes you need to see the bladder and bowel foundation.

ask your gp to refer you or you can self refer.

the nurses there are marvellous and make it easy to discuss such issues.

there are meds that they can prescribe.

good luck with your neuro appointment

carole xx

Hi thanks Carole

the neuro dismisses a lot of what I’m saying as I’m super anxious over it, but he’s ordered a new mri of brain and neck. He also did a short neuro exam of reflexes and walking and said some reflexes were slightly brisk, but on the normal side of brisk whatever tht is

he doesn’t think my leg issues are anything more thank psychological because I don’t look different when I walk? It hurts like crap but because no one can see it it doesn’t count! That’s whats so hard I think

hi kris

i hate it when medics toss terms like brisk reflexes at us without any explanation.

even more so when they make out it’s in our heads.

maybe the next mri will find a clue.

if not insist on finding out the cause of the pain you are in.

the pain may have nothing at all to do with your CNS but even if it is something that a chiropodist could help, you need to know and then you can seek the correct help.

really feel for you.

you really should try mindfulness meditation.

it’s a great tool for pain relief and will also be good to throw at the doctor when he says it’s all psychological.

carole x