MS in all its glory

outnumbered82

Does any body get a pain in there elbow (it's in the part where you'd get blood taken) don't no the name of it. Tried to lift shopping bag but it was so sore I couldn't it feels like I was leaning on it for hours which I haven't. Any one ever get these weird pains?

ash23

Ok I am starting to get really annoyed. I had my MRI on Oct 17th. I was back at the eye clinic on 1st Nov and they promised me I would have a neuro appointment for the MRI results and the appointment would be within two weeks. Almost 2 weeks and still no appointment.

I have had this MS threat hanging over my head for months and nobody seems willing to read the bloody MRI and tell me what it indicates.

It's just not fair and I keep getting bounced from Billy to Jack. GP says go to neuro, as do the eye clinic because the neurologist was the one who ordered the MRI but the neurology department don't have me booked in as one of their patients so just fob me off to the eye clinic (because I initially presented with ON).

I am despairing of ever getting these MRI results.

byhookorbycrook

Sorry to hear you are being bounced around. Is your gp a good person to hassle the powers that be?

Worried 27

ash23 wrote: »

Ok I am starting to get really annoyed. I had my MRI on Oct 17th. I was back at the eye clinic on 1st Nov and they promised me I would have a neuro appointment for the MRI results and the appointment would be within two weeks. Almost 2 weeks and still no appointment.

I have had this MS threat hanging over my head for months and nobody seems willing to read the bloody MRI and tell me what it indicates.

It's just not fair and I keep getting bounced from Billy to Jack. GP says go to neuro, as do the eye clinic because the neurologist was the one who ordered the MRI but the neurology department don't have me booked in as one of their patients so just fob me off to the eye clinic (because I initially presented with ON).

I am despairing of ever getting these MRI results.

I'm really sorry to hear you are having so much trouble trying to get your results! It's not nice being jerked around!

When I had my LP done I was given a day to go back for the results and I waited three hrs and then someone came asking me why I was there! No one had a clue! It took the best part if a month pestering everyone and it was the same thing just being passed from billy to jack!

All I can say is keep pestering them its the only way sometimes to get the answers!

All the best I hope you get some answers soon! Xx

ash23

I can;t even get through to the GP, just the receptionist who tells me that if a consultant ordered the MRI, the report would go to them.

I finally managed (after being on hold for half an hour) to get a direct line for the neuro department in the hospital so I am going to call them and see what is going on.

It's like the left hand doesn't know what the right is doing in there!

ash23

Been trying to ring neurology all morning and they aren't picking up. Ring the main hospital number and they put me through but it rang out. It's like banging your head off a brick wall.

*update* after 2 hours of ringing the same number over and over someone answered. I said "Hi, is this Nuerology" and she didn't even answer, just put me on hold for 5 minutes and then patched me through. The service in "public service" is clearly something she is unaware of.
Anyway, the nuerologists secretary told me to check with my GP. I said I had and nothing had been sent to my GP. She took my name and details and said she'd "sort it out".

What that means, I have no clue.......

Worried 27

ash23 wrote: »

Been trying to ring neurology all morning and they aren't picking up. Ring the main hospital number and they put me through but it rang out. It's like banging your head off a brick wall.

*update* after 2 hours of ringing the same number over and over someone answered. I said "Hi, is this Nuerology" and she didn't even answer, just put me on hold for 5 minutes and then patched me through. The service in "public service" is clearly something she is unaware of.
Anyway, the nuerologists secretary told me to check with my GP. I said I had and nothing had been sent to my GP. She took my name and details and said she'd "sort it out".

What that means, I have no clue.......

That happened to me trying to get the LP results they took my name and number and said they would ring back I give them two days and no word so rang again and she did the same thing so I kept ringing every day to annoy her and after a few days I think I had annoyed her sufficiently I got word from the doctor who had ordered it! Just keep after them it's the only way sometimes! I know it's not the receptionist fault but if you don't keep trying I feel sometimes it just gets pushed to the side and forgotten about! They can't forget if you are always there to remind them ; ) I know how frustrating it is and it feels like no one cares in the hospital but hang in there! Xxx

Worried 27

Hey everyone, I did it, I managed to inject all by myself! I'm like a little child I'm chuffed I guess I just feel a bit more confident about doing it now and being able to do it without my hand being held! Thanks for all the support last week I think it gave me the confidence that I could do it! Hope everyone is doing well! X

discobeaker

Go you Worried Well done

ash23

Still no word from the hospital and the numbness in my leg is coming back. It extends from my mid back, around to the front (my stomach) down my inner and outer thigh as far as my knee (last time it spread down my inner lower leg to my foot after a few days). It feels like a dragging sensation around my hip joint. My balance is a small bit off but nothing major. Was doing the heel-toe walk and was wobbling a bit but managed it ok.

I'm meant to be going for a girly weekend this weekend. It's booked and paid for and hell, if it is MS, it's going nowhere. If I go to the GP she'll send me to hospital and then who knows. So I am being a big wimp and avoiding it, going for my weekend away and will worry about my gammy leg next week.

coughdrops

You know what ash23? I'd do the exact same thing! Go on your weekend away, enjoy it, and when you come back on Monday head to GP then. Keep a note of your symptoms each day, so you have a timeline of how quickly they progress (if they do).

ash23

coughdrops wrote: »

You know what ash23? I'd do the exact same thing! Go on your weekend away, enjoy it, and when you come back on Monday head to GP then. Keep a note of your symptoms each day, so you have a timeline of how quickly they progress (if they do).

It's possible it's just a back injury as I was moving furniture with my parents over the weekend. (ever the optimist!)

Either way, MS or back issue, a few days won't make a blind bit of difference (unless I get ON again - ba dum dum tsshh!) so will worry about it next week.

Good idea though about keeping note of it. Last time it progressed over a few days before getting better. It's worse now than it was this morning so I should keep an eye on it to make sure it stalls before the weekend.


eta - change of plan. My mam rang me and I was chatting to her and she is all tormented over me not going to GP so I agreed to go, but will not go to the hospital as I don't see the point. There is nothing that they can do that can't be done at a scheduled appointment. So am just going to push GP to follow up on MRI and wait to see what happens.

Worried 27

Hi everyone, hope you are all doing well!
I've been getting really bad leg cramps particularly at night time as soon as I want to sleep! I was just wondering if there is anything that can be done to ease them! When I was diagnosed I told the neuro about them and all he said was the ms medication would not do anything for it and he never said if there was anything else I could take or do for them! At the time they where not that bad but over the last few weeks they have gotten worse. Going shopping or walking a lot makes them so much worse to the point I hate going out for a day of retail therapy which I always loved! Any advice would be appreciated!! Thanks in advance.

ash23

Worried 27 wrote: »

Hi everyone, hope you are all doing well!
I've been getting really bad leg cramps particularly at night time as soon as I want to sleep! I was just wondering if there is anything that can be done to ease them! When I was diagnosed I told the neuro about them and all he said was the ms medication would not do anything for it and he never said if there was anything else I could take or do for them! At the time they where not that bad but over the last few weeks they have gotten worse. Going shopping or walking a lot makes them so much worse to the point I hate going out for a day of retail therapy which I always loved! Any advice would be appreciated!! Thanks in advance.

Worried, I am only basing this on my experience of leg cramp when I was pregnant so I might be totally wrong. But I used to get terrible leg cramps at night, especially if I'd been walking around all day. I sometimes get them now if I wear high heels (so I wear flats) but the doc told me it's lack of potassium and to eat a banana before bed.
it helped me when I was expecting so it might do something for you.

Of course if it's MS related that might be a totally different issue which a banana won't solve

Worried 27

ash23 wrote: »

Worried, I am only basing this on my experience of leg cramp when I was pregnant so I might be totally wrong. But I used to get terrible leg cramps at night, especially if I'd been walking around all day. I sometimes get them now if I wear high heels (so I wear flats) but the doc told me it's lack of potassium and to eat a banana before bed.
it helped me when I was expecting so it might do something for you.

Of course if it's MS related that might be a totally different issue which a banana won't solve

Thanks for that not a big fan of bananas but its def worth a try! The only time I ate bananas was when I was pregnant I'd eat at least 6 a day

coughdrops

My father-in-law gets leg cramps at night, and tonic water is meant to be good for them. He'd keep a little bottle by the bed, and takes some before he sleeps. Think it's the quinine in it that relieves them. Might be worth trying?

(not that I am a doctor or have any real clue about leg cramps, don't go suing me )

You'll hear sometimes too that "pain" isn't caused by MS. Maybe not, but if you have to drag your legs awkwardly as a result of MS, you're damn sure it'll hurt after a while!

byhookorbycrook

Yes, it's most likely MS, in that muscles have to work harder,so you'll find soreness and cramps.Voltarol gel is good for soreness and stretches help for spasms.

Worried 27

Thanks everyone I'll give everything a go! It's just that its annoying when I'm trying to sleep! I don't get enough sleep with our two yr old the leg cramps are the last thing I need! X

discobeaker

Hey Worried.

I have heard about Bananas aswell. My friends sister in law added me on facebook and has been talking to me about MS as she has it aswell and her MS nurse told her to eat a banana or 2 a day if her legs are playing up so its either it has some benifit or she has shares in Fyffes bananas and is trying to flog as many as she can haha

ash23

Hi all,
Well I got my MRI results from my GP and there are a few plaques of demyelination on my upper spinal cord. None in my brain and my optic nerve is back to normal so no permanent damage to my sight.

So the GP is pretty sure it's MS or something very similar. I have an appointment with the neurologist in 3 weeks.

Was upset and shocked yesterday but am ok now today.

Worried 27

ash23 wrote: »

Hi all,
Well I got my MRI results from my GP and there are a few plaques of demyelination on my upper spinal cord. None in my brain and my optic nerve is back to normal so no permanent damage to my sight.

So the GP is pretty sure it's MS or something very similar. I have an appointment with the neurologist in 3 weeks.

Was upset and shocked yesterday but am ok now today.

I'm so glad to hear you finally got some results I'm also sorry to hear that it is looking like ms it does take a little while to get your head around it or at least that's what I found!

When I was diagnosed I was all over the place but I finally realised its not the end if the world! It's not easy but you will be fine! I tried to focus on all the things that are great in my life and ms is not going to take those from me!

I wish you all the best I'll be thinking of ya xxx

outnumbered82

I love walking and would go for walks as much as possible. But in the last few months I have noticed my right leg goes strange near the end of my walk. My right legs stamps more then the left it feels like it needs to take two steps when the other takes one! It's hard to describe it but it makes me limp a bit and it drags a bit. Noticed it a lot today when I did a 10k in total it took an hour and a half to walk so around an hour in it started to play up. Is there anything I can do to stop it or to help it when I'm walking. It's really beginning to annoy me

byhookorbycrook

My "bad" leg tends to bang on the ground harder than the better one. Sometimes it doesn't lift as well either. Both tend to happen more when I am tired or too warm/cold. It seems to be a common enough problem.One or two people I know wear a kind of brace to stop it on their foot, but yours doesn't sound too severe if you're doing 10k (good going!). Maybe mention it to the neuro and see what they suggest?

outnumbered82

Thanks know all about the banging leg my friends call me thumper when it happens :-) read about the brace u could get but don't think it's that bad yet thank god. It's just annoying seeing things beginning to go wrong.

ElleEm

I have exactly the same issue. Sometimes I feel like my foot is stuck to the ground and I have to drag it, and sometimes there is that heaviness that feels like I'm stamping.
I have a neuro appointment in Feb so will bring it up then.

discobeaker

Howdy all. Could anyone tell me this,i am diagnosed 9 weeks now and im getting no treatment yet. I have been told i have to go for an appointment early January so that will mean i have been 3 and a half months without treatment after ive been diagnosed.

Is this normal? Ive been talking to a girl who has MS aswell and she was on treatment 3 weeks after she was diagnosed and even before she had her Lumbar Puncture. Im feeling rubbish the last week or so and i have noticed im not doing aswell as i was this time last month. Do i have to get really bad before i will get on treatment?

Hope you all are keeping well this weekend

byhookorbycrook

I was on treatment within 3 months of diagnosis,but that was after a second relapse.I started on betaferon. I presume in Jan this will be sorted?The general thoughtnow is to get people on a treatment as soon as possible,I think.

I find the cold weather and being tired or run down or even a simple cold can make my symptoms seem worse.Do you think you are relapsing?
Can you ring the neuro's office?

discobeaker

Ive had pretty much 2 "relapses" since the last week of October,i even told the neuro when i was getting my Lumbar that i had a relapse 2 weeks before the lumbar.

Im thinking of calling them tomorrow and seeing if they can help me out cos its coming close to xmas and i have alot on over xmas (im a carer for my grandparents and my grandad is coming down from the nursing home for xmas and im on "duty" looking after him) so i need to be in some kinda working form.

The cold weather might be a factor of feeling rubbish but aswell i havent been sleeping well for the past few weeks so that could be another factor

byhookorbycrook

Two relapses in a month would strike me as unusual,as it takes a bit of time for each relapse to kind of "clear" if you follow me.Did you get steroids?
I'd ring the neuro if you are worried.

discobeaker

Well i dont know if it was 2 relapses or just one pretty long one. Think i will call them tomorrow morning and see what they can do for me.

Didnt really get steroids. My relapse happened 2 days before i went to london so i asked my doctor and he gave me tablets to get me through
but im not sure what they were but they did ease whatever way i was feeling for awhile