http://ms-people.com/forum Fri, 24 May 2013 11:14:49 +0000 60 http://ms-people.com/forum/topic/17602-an-interesting-week-followed-by-the-joys-of-red-tape-at-the-dwp/ Last Friday LP, hospitalized on Monday due to severe, head and neck pains, plus right leg weakness.
Sat on for two days then let home with no different pain relief than I already have at home.
Got my appointment through to see my new neuro for when my LP tests are through, thankfully only have about 5 weeks to wait for that.
Saw gp this morning, who recognized what the hospital medics missed, despite my desperately trying to tell them, that I was having another episode/relapse. So I have got some prednisolone now and didn't even need to ask for it!
Then into the job centre for my interview for ESA. I let him go through his spiel then informed him its contribution based and I only have one more months worth of money outstanding so why am I here? I am not entitled to any benefits due to the fact my husband works!.......am I  looking for a job, he asked, well I was until I was struck down in January potentially with ms...ahhh was his reply......what job did you do before you were forced to give up?.....I was an operating theatre sister!.....ahhhh.....I think he was out of his depth today.
He gave me a few pointers and food for thought for starting up a New business, may pursue it in time...but for now, I have another relapse to get over, tests to be confirmed and hopefully some treatment to start soon.

Happy Friday everyone xxx]]> Fri, 24 May 2013 11:14:49 +0000 http://ms-people.com/forum/topic/17602-an-interesting-week-followed-by-the-joys-of-red-tape-at-the-dwp/ http://ms-people.com/forum/topic/17594-how-do-you-deal-with-stress/
Also, how much do you think stress affects any relapses you have?

My last relapse (first bad one) arrived 3 days after we got burgled and on the day that school places were being allocated for my 4 year old. I was incredibly stressed at the time but I keep thinking back and wondering that if I had dealt with the stress a bit better then maybe the relapse wouldn't have been as bad or maybe not happened at all?

I think I'm generally an optimistic person and always try to find some positives even where there don't seem to be any but then inside I feel quite stressed even if I'm trying to stay calm and not show it.

The relapse I had was terrifying and I just want to do anything I can to try and avoid it happening. I am eating more healthily, contemplating exercising (I have the excuse of a cold to not actually start yet!) but have no idea how to try and stress less.

Any thoughts would be appreciated! :)]]> Fri, 24 May 2013 08:48:20 +0000 http://ms-people.com/forum/topic/17594-how-do-you-deal-with-stress/ http://ms-people.com/forum/topic/17585-1-month-on-gilenya/ ive had the shortness of breath,the muggy head,and feeling totally drained and sleepy,also had the weird taste,but in general felt better,although today is a bad day my legs just don't want to carry me feel like im going from one chair to another,i did have a bizi day yesterday which may explain this so now its rest for couple of days,  susan x]]> Fri, 24 May 2013 08:34:05 +0000 http://ms-people.com/forum/topic/17585-1-month-on-gilenya/ http://ms-people.com/forum/topic/17601-heart-palpitations/
I have had a chest infection which i developed shortly after a course of steroids to treat a relapse. Went and saw gp who prescribed amoxicillin for 1 week. Went back yesterday as i was no better, and now have Bronchitis and am taking Clarithromycin which is apparently a broader ranged antibiotic. Was also given an inhaler.

On and off today i have been getting heart palpitations and really bad tremor in my hands. Anyone ever experienced anything similar with medications, or is it maybe a pseudo relapse caused be infection?

Going away tomorrow so though i would ask you guys to save hunting a GP out in Cornwall!

Thanks
Lala x]]> Thu, 23 May 2013 21:40:00 +0000 http://ms-people.com/forum/topic/17601-heart-palpitations/ http://ms-people.com/forum/topic/17598-update-for-you-all-from-me/ Thu, 23 May 2013 09:30:13 +0000 http://ms-people.com/forum/topic/17598-update-for-you-all-from-me/ http://ms-people.com/forum/topic/17597-diagnosing-ms-and-tests/ MRI of the brain, an MRA and an angiogram due to my aneurysms and no white mass was detected for MS,Please help!!The 2 neurologists I saw said there is no way I have MS.Thanks in advance for your help.  I have gone through lot with health issues in the past 9 months.]]> Thu, 23 May 2013 07:41:57 +0000 http://ms-people.com/forum/topic/17597-diagnosing-ms-and-tests/ http://ms-people.com/forum/topic/17566-botox/ Just been for my second dose into my leg to try to help my toe curling. The first dose was months ago and didn't have any effect but this time he injected it into 2 different places both in my lower leg.
I really hoping this helps but Im not expecting too much.
He said it could take up to 6 weeks to take effect but right now my toes feel worse than ever.

We got into a discussion about the cause and he said that it might be made worse by my sacroiliac problem and got all technical so he lost me somewhat.
This was because i told him that when i have been sitting on a firm chair or my bath board my toes were always really bad for quite a while.
My pain around my sacroiliac is always there but its nothing i can't handle with paracetamolbut he has now suggested gabapentin

Hmm...

]]> Wed, 22 May 2013 13:41:18 +0000 http://ms-people.com/forum/topic/17566-botox/ http://ms-people.com/forum/topic/17211-ib-to-esa-the-battle-begins/
I got my DWP letter this week, the one I've been expecting since 2010, finally plopped through  the letter box.  I now await the phone call! So now I start to build my case to remain limited in my capability  for work,  and we'll see which group I get put into.  Just contacted my hospital for access to my medical records, so I can get copies and send them to DWP.

Wish me luck guys!]]> Tue, 21 May 2013 23:28:58 +0000 http://ms-people.com/forum/topic/17211-ib-to-esa-the-battle-begins/ http://ms-people.com/forum/topic/17583-should-i-ask-for-steroids-again/ Im confused, two weeks ago i ring my ms nurse because i thought i was having a relapse, she discussed this with the neuro and made me an appt to see him with a view to steroids.
By the time she had called me back to inform me i was feeling a bit better so decided to wait and see.

Now I've had another few crap days and my legs are like jelly today. So i can call her back but whenii speak to her either tomorrow or the next day I'll likely be feeling better again but for how long i dont know.

Am i in and out of a relapse or having smaller relapses often? I just dont know.]]> Tue, 21 May 2013 23:14:36 +0000 http://ms-people.com/forum/topic/17583-should-i-ask-for-steroids-again/ http://ms-people.com/forum/topic/17582-switch-consultants-or-not/
I have just had a visit from my the local MS practioner and my nurse. This is a meeting to get the ball rolling for dmd's. My neurologist is not a MS specialist but gave me a diagnosis and has approved my dmd eligibility. My nurse suggested i should switch to the other neurologist based within the same hospital trust just at a different site as he is an MS specialist and then i would have access to the dmt clinic's and have my MS treated by a specialist.

My problem is the first neuro i saw (who was a locum) was so awful, didn't listen to a word i said, told me i had a functional problem and ordered the wrong tests etc that when i was moved to my current neuro i was so relieved to have a doctor that although a bit un-personable knew what he was doing and listened.

I'm afraid to move incase i end up with somebody who won't listen to me again.However the dmt clinic does sound like it could be worthwhile. Not sure what to do for the best now? Am i being a baby?

Any thoughts and suggestions welcome.
Lala x]]> Tue, 21 May 2013 19:42:59 +0000 http://ms-people.com/forum/topic/17582-switch-consultants-or-not/ http://ms-people.com/forum/topic/16240-tysabrigilenya/
Hope your all doing well (as well as you can do with MS ). I have'nt posted on here for a while but I was wondering if anybody on here had any experience of Tysabri or Gilenya ?
I've gone downhill a bit lately with 3 relapses since December, 4 in total in the last 16 months. I'm having my latest one now
As such my consultant has suggested Tysabri if my MRI shows new or active lesions. I would think that's the case though considering. He first mentioned trying Gilenya before I mentioned Tysabri.
After trawling the net Tysabri sounds great apart from the potential side effects but there's not much 1st hand experience from Gilenya users.
Hopefully one of these drugs will slow this ******* condition down   because Copaxone does'nt seem to have helped  ]]> Tue, 21 May 2013 09:29:17 +0000 http://ms-people.com/forum/topic/16240-tysabrigilenya/ http://ms-people.com/forum/topic/17578-headaches/
I suffer from a lot  of headaches  and had a particularity bad headache last night "still in the background now" this headache completely wiped me out  , still feeling the effects of it now !

I was reading that  lesions on the  spine may be the cause of this , which i have  ,
I'm still very new to all this and wanting to know why i'm suffering from these  thumping migraines
and if there is anything that may help .

Mal]]> Mon, 20 May 2013 11:26:08 +0000 http://ms-people.com/forum/topic/17578-headaches/ http://ms-people.com/forum/topic/17576-left-calf-pain-ms-or-not/
Sometime yesterday a sharp pain started in my left calf. It's not quite like cramp, more like a badly pulled muscle except I've done nothing to pull a muscle. But, unlike a pulled muscle, it's only apparent when putting weight on it, eg: walking, going down stairs, etc; I don't really feel it otherwise.

Something in me makes me wonder if maybe it's not an MS thing, but thought I'd ask you all first in case any of you have had something similar? Also it's Friday evening and GP surgery's now closed till Monday, and I don't want to have to phone my MS nurse's mobile on a weekend if it's not necessary, especially when I've not had need to contact her in over 2 years.]]> Sun, 19 May 2013 17:41:49 +0000 http://ms-people.com/forum/topic/17576-left-calf-pain-ms-or-not/ http://ms-people.com/forum/topic/17575-amantradinehas-anyone-tried-this-drug-for-fatigue/ SPMS. I suffer from a lot of fatigue and she is writing to my GP to prescribe me Amantradine, I wondered if any of you had tried this drug for fatigue and whether it helped  and what side effects if any.    Linda x]]> Sat, 18 May 2013 14:18:06 +0000 http://ms-people.com/forum/topic/17575-amantradinehas-anyone-tried-this-drug-for-fatigue/ http://ms-people.com/forum/topic/17574-worried-about-mri-results-ms/ MRI abroad after an episode of chronic vertigo.  I'm 54 and have had vertigo off and on for more than five years.  Over the last year I have had a worsening tremor in my right hand and some weakness.  I have also had awful fatigue.
The report states there is multiple millimetric non-specific ischemic gliotic lesions in both hemispheric white matter.  I have now been referred to a neurologist in the uk an waiting for appointment but very anxious and not feeling too well.
can anyone tell me what the MRI findings might mean?  Thank you]]> Sat, 18 May 2013 13:41:32 +0000 http://ms-people.com/forum/topic/17574-worried-about-mri-results-ms/ http://ms-people.com/forum/topic/17567-hello-and-lots-of-questionssorry/

I was diagnosed with relapsing remitting ms in Oct 2011 after a mild episode of numbness lasting 6 weeks. I then had another mild episode in Sept 2012 when I was 36 weeks pregnant which only lasted 2 weeks so I have spent the last few years burying my head in the sand over the diagnosis as I felt so well I just didn't really want to face up to it.

That is until a few weeks ago when I had my first 'proper' experience of MS. I couldn't walk in a straight line, was vomiting every time I moved and the left side of my face went completely numb. I called my MS nurse who got me into hospital and I had 3 days of steroids which made me feel completely mashed but did the job as I was up and looking after my boys, driving & generally doing everything again (albeit a bit slower) after 1 1/2 weeks.

Now that I feel so much better I would like to go back to burying my head in the sand but my neuro and MS nurse want me to start on DMD's, I have a choice of Avenox, Rebif, Betaferon and Copaxone. I got sent some DVD's and told to look at the MS decisions website, but I am totally confused.

I didn't really feel like I learnt that much from the DVD's and then was surprised that the MS decisions website was saying the DMD's only reduced relapses by 1/3, which didn't seem like a lot considering the potential side effects of the drugs. Also the website said that there was no evidence that copaxone reduced disability which I thought I was leaning towards. Does anyone take Extavia? I don't know anything about it and wasn't offered it.

So for anyone on DMD's or looking into it at the moment, where did you get all your info so that you could make an informed decision as I really feel like I'm missing something? If you are already on any of the drugs, how are you finding it? Is the flu feeling with some of them really bad as I have young children so taking paracetamol and sleeping off the flu feeling as the DVD's suggest isn't really an option when I have to be up in the night!

When did you all start on drugs? Was it soon after being diagnosed? I was hoping not to have to go on drugs for a good few years (down to my own ignorance about it all) so I'm still coming to terms with it.

Any tips on coping with the needles? I HATE needles so this will be fun!!

Is there anything else that would be useful for me to know?

Sorry for the essay, I look forward to chatting to you all in time :)

Rach]]> Thu, 16 May 2013 20:56:13 +0000 http://ms-people.com/forum/topic/17567-hello-and-lots-of-questionssorry/ http://ms-people.com/forum/topic/17407-wheels/
So I started to think about a powered wheelchair. My office is not very wheelchair friendly but it could be made to be. I would have to use the goods lift (there is a formal step-free route but its  a big long winded).

To start the ball rolling I have been referred to my local Wheelchair service by my MS nurse. They are going to come and assess my needs. If nothing else they will give me advice and point me to the next step (I don't expect them to hand me a powered wheelchair). I might need an access to work grant but this is hopefully the sort of advice they will give me.

I have to do something as I only go to the office twice a week and work from home the rest of the time because of the fatigue I suffer from and yet i am still getting so worn out.

It seems like everything I do is too much effort. Walking to the office from the car park, walking around the office and going to meetings all make those 'in office' days so tiring. Then once tired through physical effort I then find myself mentally fatigued.

I have a similar issue at home. Getting washed and dressed, taking a bath, all seem to use up so much energy. I had an OT in a while ago who suggested a perching stool for the bathroom which has helped but now I am planning taking the bath out completely and getting a walk in shower.

Of all the symptoms of MS I have, Fatigue is the worst. I can deal with pain, loss of balance and weakness in my arms and legs but fatigue stops me doing things and even stops me thinking and remembering stuff (important stuff too).

Will wheels make much difference? I don't know. The scooter helps so I am guessing a powered wheelchair should. On the other hand it also can be a life changer. Is it better to fight on? or should we just accept it as a necessary evil? I don't know, I guess I am just too tired to think about it. I also don't know how much this is going to cost and so that might make the decision for me.

I will no doubt keep you informed on my progress,

Regards,

John ]]> Thu, 16 May 2013 17:54:34 +0000 http://ms-people.com/forum/topic/17407-wheels/ http://ms-people.com/forum/topic/17571-strange-happenings-on-the-phone/ I received a phone call, but the girl on the phone was really loud (ear bleeding loud). I persevered for as long as I could, then the strangest thing happened. I had it on my affected ear out of habit as I am right handed. After a couple of minutes, my facial numbness went worse, my ear felt more plugged than normal, my right eye went blurry and the trigeminal nerve pain around the back of my ear started playing up.

Has this weird experience ever happened to anyone else?

Sam x]]> Thu, 16 May 2013 10:56:46 +0000 http://ms-people.com/forum/topic/17571-strange-happenings-on-the-phone/ http://ms-people.com/forum/topic/17569-life/ but im seriously beginning to wonder if ive begun the road the a sexless life.
8months so far, and trying desperately not to sound selfish but I am still young (under 40)
and am finding it hard to think about.]]> Thu, 16 May 2013 05:57:14 +0000 http://ms-people.com/forum/topic/17569-life/ http://ms-people.com/forum/topic/17558-fampyra-fampridine/
Has anyone else heard this little nugget?

]]> Wed, 15 May 2013 17:14:56 +0000 http://ms-people.com/forum/topic/17558-fampyra-fampridine/ http://ms-people.com/forum/topic/17561-intravenous-iv-steriods/ I was diagnosed about 3 weeks ago with MS ( the exact type has not been discussed yet ) after numbess starting in the entire left side of my body but now the right also. Also, lost vision in left eye (optic neuritis) and have fatigue, mood swings etc.
Most recently began getting terrible dizzy spells - I thought the Blackpool Tower was falling ! And after speaking to my nurse she's been advised by Neuro to put me on a 3 day course of MS
My confusion is this, I had my first shot today at 3pm ish and I feel incredibly worse ! Although my legs were numb I was able to walk and prance / dance about for an impressive period... But now I'm limping to even use the bathroom due to loss of sensation and the ARGH pain!!!
Has anyone experienced anything similar? Any feedback would be appreciated! Love - Maria]]> Wed, 15 May 2013 05:59:13 +0000 http://ms-people.com/forum/topic/17561-intravenous-iv-steriods/ http://ms-people.com/forum/topic/17541-upper-back-neck-and-arms/
For the last couple of weeks, I've been struggling.....

In the past it's been my legs that have been the main issue, numbness, stiffness, pain and spasms etc.

Over the past couple of weeks, I've had a pain across my back, between my shoulder blades, neck pain and stiffness, and my forearms have been so very painful too.  It's sort of new to me.

Sometimes it feels a little like the dreaded 'hug' but often it's just, what I can only describe as a stiffness across by upper back.....it's most uncomfortable. Anyone else?

I'm seeing the Neuro in early June so I will mention it.....perhaps I'm just getting old and arthritis is setting in !

Scully
x]]> Tue, 14 May 2013 14:23:44 +0000 http://ms-people.com/forum/topic/17541-upper-back-neck-and-arms/ http://ms-people.com/forum/topic/17551-is-this-a-relapse/
As im newly dx with rrms i dont know if this is a relaspe. According to my neuro and physio ive had a couple of relaspes in the past year which i wasnt aware of because i didnt get any new symptoms just reacurring ones that got worse ie legs wouldnt work ftom last october (and havent fully recovered yet) plus terrible spasms in my right side (so painful) which eventually disappeared but its now returning!!

I was expecting a dx of ms so it wadnt a shock but i hadnt realised it was RRMS. I finally had a good cry yesturday about it all (took 3 years for the flood gates to open lol)
At least i know doors will open for me now. Dpoke to physio and i was pleased to hear that my ms nurse and physio work closely together which is a bonus. I meet my ms nurse on the 12 of june and i know i have decisions to make about DMD's. I hate needles but i will suffer it only to slow this bugger down.

So is this a relapse or not???

Ur advice would be greatly appreciated

Vanessa xx]]> Mon, 13 May 2013 17:39:28 +0000 http://ms-people.com/forum/topic/17551-is-this-a-relapse/ http://ms-people.com/forum/topic/17557-ms-society-england-council-annual-meeting-is-taking-place-on-saturday-8th-june/ http://www.mssociety.org.uk/ms-events/2013/04/join-us-england-council-annual-meeting I received info about yesterday.    Great Dane x]]> Mon, 13 May 2013 14:36:50 +0000 http://ms-people.com/forum/topic/17557-ms-society-england-council-annual-meeting-is-taking-place-on-saturday-8th-june/ http://ms-people.com/forum/topic/17553-talking-about-ms/
I am looking for some advice about how to talk to people (friends,acquaintance's, strangers etc) about MS and all that it entails.

I don't go round shouting it from the rooftops and telling anyone who will listen, but on occasion i do something like fall over or spill tea everywhere and so i'm not branded as the local drunk i feel i have to explain myself. This usually kicks off one of three reactions:
1) A blank stare, a long pause followed by "is that some sort of virus?"
2) A sympathetic "aww, my friends mothers sister had that, she gets a bit tired from time to time too"
3) Or a genuine interest and about 70,000 questions

Reaction number three is the scariest as most of the questions people ask me i don't know how to answer! Reaction number two makes me want to cry or shout and hit people depending on my mood that day! Reaction number one is probably the most understandable and probably the one i would have given 2 years ago, but still infuriating from this side of the fence!

So anyway my question is: how do you deal with peoples lack of understanding about something that controls so much of our lives? Without ending up friendless or in jail!
Also how do you avoid getting all choked up when talking about it, which is really embarrassing!

All thoughts welcome and very much appreciated.
Lala x]]> Mon, 13 May 2013 12:54:13 +0000 http://ms-people.com/forum/topic/17553-talking-about-ms/ http://ms-people.com/forum/topic/17554-oops-ive-done-it-again/ Wanted to know what I did saturday and sunday, she rang and I was out.  Cannot get over to her I went to a shop gave myself half an hour to buy a top. Yesterday went to buy a kitchen bin.  Luckily hubby took me to these places.
I said I was in pain over the weekend. i said I am surprised hubby does not leave me as I am moaning so much.

I will never leave you she says, I know  says me.
She says I was only asking how you were crap says me absolute sh....t  I never swear in front of my mum.
finished with her saying  I am here if you need me
I DONT NEED YOU SAYS ME

Guilt guilt guilt

Tried to ring her back , she is not there she usually goes around the shelterd housing mithering the manager and her neighbour about this time.

She is registed blind she cant hear that well and wont use a wheelie walker walks so slow it actually hurts me to walk with her and she hangs on to me and she is much heavier than me.
I did say I think the MS has got me and I wish she knew about it.  She has her own health problems but she never moans about them so more guilt on me

I have stayed clear of my mil and fil this weekend one with alzheimers and one also registered blind.
Me and my hubby are the only ones that can help them. It just gets too much sometimes when I would rather be with my grandaughter that live 60 miles away, I also am scared that things may be getting worse and I wont be able to enjoy myself with her.

I feel so selfish at times..................RANT over]]> Mon, 13 May 2013 12:13:48 +0000 http://ms-people.com/forum/topic/17554-oops-ive-done-it-again/ http://ms-people.com/forum/topic/17552-just-a-small-thankyou/
THANKYOU!

Sam x]]> Mon, 13 May 2013 11:06:38 +0000 http://ms-people.com/forum/topic/17552-just-a-small-thankyou/ http://ms-people.com/forum/topic/17545-real-life-experience-of-dmds/
I am trying to decided which DMD to start taking and was initial drawn to starting Copaxone as 'Mood changes' are very important to me having experiences of slight depression (injection frequency is not important at all).  However, on trudging through the minefield of information I can see that this has 'no clear impact' on reducing the development of disability- again hugely important to me so really my question is....

What are people experience of mood changes with Interferon Beta 1a's?

Thank you

x]]> Sun, 12 May 2013 19:03:44 +0000 http://ms-people.com/forum/topic/17545-real-life-experience-of-dmds/ http://ms-people.com/forum/topic/17547-collapsing-knee/ my right knee  collapses ,then it goes back to normal until the next time i stand up after resting,

this has been getting steadily worse  and it is now  happening while walking , there
is no warning signs no pain to tell me it may go , it just collapses out of the blue

Has anyone else had/have this problem ? would like to know if its down to MS or something else .


Mal]]> Sat, 11 May 2013 18:51:30 +0000 http://ms-people.com/forum/topic/17547-collapsing-knee/ http://ms-people.com/forum/topic/17525-spms-feelings-of-being-diagnosed-again/ SPMS words so difficult to digest. I am really struggling (I was diagnosed with RRMS in 2001 and SPMS 2 weeks ago) and just wanted to know if anyone else went through a sudden emotional falling-off-cliff feeling too. I have so many worries and am re-evaluating everything in my life in totally fatalistic ways. I’ve been crying a lot and feeling scared and lonely and decided I would look at joining a forum. Hopefully things will start looking brighter soon, and maybe the forum will be part of that.

I’m thinking, like with an initial diagnosis, that doctors should offer at least some words of support or suggest something to read or someone to talk to – anything! Rather than just saying “come back in 6 months and we’ll talk about maybe taking you off your medication”…like that’s it –nothing more we can do - our jobs done – now just go away and deteriorate!

[Sorry about such an emotionally leech-like post – will also post positive ones in the future – I hope! (I’m a relatively proactive positive person in general!)…]]]> Fri, 10 May 2013 14:43:45 +0000 http://ms-people.com/forum/topic/17525-spms-feelings-of-being-diagnosed-again/