Last reply 1 week ago
What do you think?

Hi ive spoke to ms nurse today and ive been the drs.wow alot going on.ive had serious pain n lack of movement in shoulders n top alf of arms im goin av physio n aving blood test for inflammation of joints i dont know whats going on with me n the dr isnt sure ive also got inflammation of ribs an hiatus hernia n aving loads of pain n issues.my legs stiff heavy painful in places.has anyone else have these issues.i got go optians bout the white n black dots at side of my eye.sorry to moan

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stumbler
3 weeks ago

@tealover589 , I’ve removed your reply to the “Am I Bovvered?” conversation, as it wasn’t really appropriate, and created a new conversation for you.

Anyway, you do seem to have a bit going on and it’s good that your Doctor is doing what he can to help.

What did your MS Nurse suggest for this list of ailments?

And, don’t apologise for moaning. That’s why we’re here. 😉


tealover589
3 weeks ago

Thank u for your reply my ms nurse wants me have physio come out to me and asked me ask my doctor for pain relief for my shoulders and arms but my dr doesnt know what it is so im aving blood test for imflamation of the joints.as for my ribs i dont know .im going back the hospital about hiatus hernia but they all upsetting the ms
Ms nurse said i can have medical cannabis private prescription 380 pound lol i only asked bout cbd


tealover589
3 weeks ago

Sometimes my dr makes me feel like it all my head.that leaves me feelinh angry n frustrated he doesnt seem to understand much about ms.
I feel im not good enough for my partner im always suffering pain and i cant do or be who i was.i take one day at a time n try laugh bout it like when my fingers are tingling n numb il say my spider senses r tingling lol


stumbler
3 weeks ago

@tealover589 , unfortunately, GPs are General Practitioners, which means they are a jack of all trade and master of none. Hence we get referred on to specialists.

If you can, access the MS Trust website (https://www.mstrust.org.uk/) and search their A-Z for any specific problem that you have. Print out the article and take it with you to your GP.

Otherwise, discuss your issues with the your MS Nurse and get them to speak to your GP.

And, never feel that you are not good enough. Living with MS is a huge burden, but it’s invisible. Your partner needs to educate themselves a bit about MS, to truly understand you. But, keeping everything light-hearted is also a good strategy.


tealover589
3 weeks ago

Thank you for advice it feels good to be able talk bout ms with someone else wh has ms u understand.
Where do you live.
What stage of ms are you


itsmewithms
3 weeks ago

@tealover589 This is a point I made in another post…everyone has something and that none of us are a perfect package. Before I was diagnosed with MS my husband was diagnosed with UC. Trying to manage his disease through diet was partially effective but the stress he had at work I thought was too much and I encouraged him to quit and focus on fixing up the house and building the next. That is what he did and he is much the better for it.

Now my MS is catching up with me and I am hoping that after this next contract that I can wrap things up, we’ll see. I’ve had to educate my husband a bit about MS as well to little effect. I also encourage him to come to Dr appointments. He offers advice that would work for UC as that is what he knows. Basically I should restrict my diet so it includes no inflammatory foods (ie mostly kale 😉 and exercise more. I remind him that I am unlikely to strengthen my nerves through barbells.

There may also be support groups in your area and they could have social outings that include spouses? You shouldn’t be left feeling that you aren’t “good enough” although I sometimes feel that my husband “deserves” someone that can do all the physical things with him or help more as we finish up the stuff around the house. But I do what I can such as more of the shopping and lighter end of the tasks. I also give him suggestions on what types of things I could help with as he frequently doesn’t understand what tasks I consider difficult and which would be ok.


stumbler
3 weeks ago

@tealover589 , I’m down on the South Coast, near Brighton. I’m SPMS and have had MS since you were 14! Eek! 😯


tealover589
3 weeks ago

Thanks for replying.how did u know yourself that u spmsbfore u had mri scan.have u got problems with your eyes .dizziness.how do u cope with the stiffness in arms and legs.
I got rrms but my mri scan says the ms has got worse butso have i.i havent got any medication for my ms.


stumbler
3 weeks ago

@tealover589 , I only ever had one MRI and that was to allow a formal diagnosis in the late 1990’s.

I was given the arbitrary news of my transition to SPMS at an annual appointment in 2010. No tests, just an arbitrary transition. I suppose it was based on my relapse history??

The majority of my problems are lower body. Unfortunately, most things below my waist!

I’m trying to keep my legs going, but it’s getting hard, especially when UTIs render me immobile and i then need to recover……..


tealover589
3 weeks ago

To be honest im guessing when i have relapse i dont always speak to my ms nurse cause im always ill with one thing or another
What does arbittary transition and utls mean im sorry i dont know


stumbler
3 weeks ago

@tealover589 , an arbitrary decision is one this is made based on random choice or personal whim, rather than any reason or system. Well, that’s what it seemed to me!

A UTI is a Urinary Tract Infection, basically a waterworks problem, a bladder infection. 😉


stumbler
3 weeks ago

@tealover589 . try and get an email address for you MS Nurse, so you can easily update them when things get rough.

Then they can keep a record of it and give them a chance to offer advice on a timely basis.


merfield
3 weeks ago

@tealover589, I am so sorry you’re having such a hard time but @stumbler has a fund of helpful advice and information so you can’t do better than listen to him. All of us here are at various stages of different types of ms. none of us is experiencing the same symptoms but we all know its effrcts on us so don’t feel you are alone.xx


tealover589
3 weeks ago

I ring my ms nurse n she rings back quite quickly sometimes.i think my other illnesses make my ms worse n i think its confusing.anyway thank u for all your advice everyone x


tealover589
1 week ago

Hi how r u.im having real pain n problems with my arms what medication could i have for this its driving me crazy the physio said its my muscles n ms and explained it too me and speaking to my ms nurse.i can hardly move
It felt good to talk about it

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