I am going to have a good old MOAN.....

Everyday living
1

I have had my Baclofen doubled on Friday after a visit to my doctor,who had to check a book first to see if it could be upped,not moaning about that she did the right thing.

The spasms are so bad that I was having full body stiffness during the night again.Spasms so harsh and painfull during the day and gosh my arms,legs,shoulder would realy jump.The heat is killing me and I am dragged so low I do not think I can go on much longer.I have got terrible fatigue,I dont sleep during the day I get so worn out I pass out.I took my child and two of her frinds to the park on Saturday and I sat on the bench as usal and I passed out,the children thought I had fallen asleep.I woke suddenly with my child mentioning one of her friends name.

My body is vibrating,twitching,jumping about,I am in great pain all day and night.I am photosensative now were even factor 50+ dont stop me from burning.My arms and face are terribly burnt and yet I dont sit out in the garden like many sun worshipers do.My eyes burn and water and fuzzy site all day.

My hands have swollen so much I could not get my rings off for three days,my legs,ankles and feet are like balloons,I cannot get a pair of shoes on my feet and have to wear my pink booty slippers.

Im crying all the time as I am so poorley.

I had a cool bath this morning which did make me feel better for about an hour and again tonight a cool bath and again made me feel a little better for a short while.I know the heat is causing all these terrible symptoms.I managed to get my rings off my fingers today and lucky I did as I am swollen badly again,the swelling never goes away just lessens.

My doctor has written many times and telephoned the neuro,she even rang while I was on Friday.But again she got no reply.My doctor is fighting for me so hard and I do appreciate all her efforts,she is very angry and upset that they have not answered her letters or calls.She wants my LP done NOW and she is not happy I have been left to suffer,with no MS nurse,no OT.That I myself had to get a physio and a Support Worker.Why is it so hard to get help?

Ive had symptoms since I was 19 years of age.The past three years have been utter hell for me.Ive been reading up on diffrent types of MS.

My symptoms never go away,they may just ease once every 1-2 weeks for a few hours or maybe its the meds helping me out.

I feel so low and dont feel myself at all.I cannot wait for rain and cooler weather.I sat infront of a closed double glazed window and the sun burnt my back through the unit.

Ive tried asking family for help but they just ignore my plees.I have friends who are more helpfull.

I just want be me again.Will I ever get better?

Yes I suppose I will but at the moment without my doctor getting help to treat me she is also hitting a brick wall hard,she is trying but she aint a specialist who deals with MS.

The nextdoor neigbour is a bully and plays loude music from about 10-30 am until about 7 pm were he then turns it down.Its giving me terrible headaches,with a combination of the sun.

I just wanted a good old moan and get how I feel out of my system.I need to STOP crying and blubbering all the time.I do fight back but this hot weather is stopping me and my life from moving forward.I dont want to live this terribly painfull life mush longer.I just need help to get better and the neuro is holding everything back…

Charlie,x

2

Oh and do anyone esle get terribly swollen hands,feet,ankles,legs?

It is NOT my meds as I have swelling for many years…

3

Oh, you poor thing!!!

I really don’t know how to help but just wanted to say your post really touched me and made my heart sink.

I don’t have much experience but I guess if I were you, I would keep calling the GP and neuro secretary, dont stop until you get the help you need.They are paid to look after us, whatever our condition. May sound a bit extreame but maybe turn up at A and E if things get really bad ?

When it comes to home life, have you got any friends or family that you can lean on? A shoulder to cry on or someone that can give you a break so that you can rest and have more cool baths during the day?

Thinking of you and I hope things improve for you very, very soon.

Clare

4

Sorry you are feeling so rotten, Charlie.

The heat can play havoc with MS. Have you tried a cooling vest? They are a Godesend. I am in Australia and the heat here would make you curl up and die. Try 40 celsius for average summer days…

I swear by this company’s cooling vest and if you tell them you have MS they give you a discount. I am not sure how much it would cost to ship it out to the UK but there must be similar products out there.

http://www.arcticheat.com.au/pr_cricketaus.htm

Belinda

5

Hi Charlie are you diagnosed with MS?

Photosensitivity is a classic Lupus symptom just a thought.

The heat is terrible with MS for some. I never go out in it for longer then a few minutes and spend most of my day in doors away from the sun. I allow myself little sit outs in the morning when the sun is not so hot to get my vit D no longer then 10 minutes. Going to the park with kiddies in this heat is probably not a good idea.

Make sure you drink plenty of fluids.

The thing is with the lumbur puncture i had one and although i got all the Ogliconal bands one would expect to see in MS i also had inflammation in the blood test that they take at the same time, which muddied the waters, and at the time made the results negative for MS.

Big hugs Mariax

6

Hi Charlie, I am so sorry that you aren’t getting anywhere with the Neuro, I assume from your message that you haven’t got a dx. It’s very difficult. It was hard enough for me at first and I did have a dx fairly quickly.

After not being able to get any steroids after I had numbness from waist to feet. I decided that in future I would go to the a&e department of my hospital and refuse to leave until I was treated! As it happens, eventually I did receive good treatment and only have to call the nurse and he or she gets back to me.

Everything does seem to take time with the NHS but they do get there in the end.

You could join your local MS branch; as You don’t have to be fully dx to get some sort of support.

I’ve never been a fan of the heat but now I find it unbearable, fortunately for me I have ceiling fans in my bedroom and lounge so I don’t have to put up with it most of the time. I also use the ‘kool tie’, which does seem to help a bit.

The crying and feeling down I recognise as I go through this everytime I have an MS flare up. Don’t worry about having a moan that’s what this board is for.

Hope you are able to get some help very soon.

Take care

Love Wendyxx

7

Thankyou everyone.Thankyou for taking the time to read and the time to reply.Bless you all.

I have had two cool baths today and feel that much better,as it gets hotter and I feel more and more poorley I take a cool bath and just have a long soak.I then feel that bit better.Roll on another cool bath later.

I just felt so low yesterday and many family members are to wrapped up in there own little world.I am the one who always run after them and help in many ways,now I need the help I see none of them.Friends yes that I do have,time I asked a few for help that they do keep offering but I am stubbon and like to struggle along,I dont want to give up.

I felt so low for so long I didnt feel I could pick myself up and regain some energy and confidence.Today I am feeling better.

I have looked into Lupus and my doctors have done several full blood tests and all were clear.I think I got tested for every known disorder,but good idea to look it up.

I havent got joint swelling my whole lower body swells from the waist downwards and my hands,sometimes my face gets a little puffy.Could the swelling be due to to much activity or not enough activity?I have lost a third of my left lung function and have a heart murmor.

I think after doing a lot of reading the swelling is either over activity or under activity both appear to cause swelling.Possibly edema.

I just feel I want my life back,were I could dig a garden with my mum,ride a push bike,roller blade with the kids,play football with the kids,now all I can do is sit and watch.I feel guilty because of my daughter and that I am unable to play as I used to.I just want to feel better.

Thankyou again.

I am sure I will be able to smile again soon.

Charlie,x

8

Hello Charlie,

I am so sorry to read of your troubles, as you don’t deserve one bit of it. This heat is like vermin to people with MS, so roll on the cool days.

Take care,

Moira

9

Thankyou RF…

Your all wonderfull people.Ive got up today and its a misty cool morning and I am being positive today.I now feel I can do some house chores without the feeling of passing out/collapsing.Gosh I never knew the sun would make me so ill.I knew over the years it gave me terrible headaches and I didnt feel well.Now I understand why.I have never been a sun worshippers.

Gosh we do get kicked hard during ourlives.But hey I am thinking I can go on today.I feel I am NOT alone with my struggles anymore.

Thankyou again everyone you make me feel so uplifted and loved.

Charlie,x

10

Charlie,

Heart and lung problems can cause oedema so I would get that checked by your GP or by your cardioligist or pulmonary specialist if you see one.

B

11

Thankyou brog64,I think I will mention it to my doctor next time I am having an appointment.My feet feel like a ball trying to walk on them.

Charlie,x

12

Hi,

I’ve got quite bad foot drop in my left foot and it now starts to get swollen during the day. My neuro and physio have both said the same thing. It is caused by lack of muscular activity. The muscles contract when being used and this helps with the the blood circulation.

Massage the affected limbs if you can reach them, try to make them do things they can no longer do. In my case lift the front of the left foot off the ground and wriggle the toes…

Get to talk to a physio or MS niurse.

Good luck,

Patrick

13

Hi Charlie,

I have had ms for over 30 years without knowing what it was, in and out of hospital and never a dx. That is until I moved and saw a rheumy who discovered that I had Ankylosing Spondylitis in 1999. Was given all sorts of drugs to help and of course exercises. In 2009 my left hand swelled up, I went to A/E was told to keep it in a sling for a week, which I did, then my right hand swelled up, then my right leg, then my left leg. As luck would have it I was to see my rheumy and he took one look at me and said you’ve got Lupus, I have the Butterfly rash all over my face and cannot go out in the sun and like you wear factor 50+ sunblock. This of course meant yet more drugs. For quite a few years I had been dragging my right leg and it was getting worse and I was having myoclonic jerks. He told me to see my gp and get a referal to a neuro, the one he recommended and within a few months she announced that I have SPMS in 2011… Plus I have osteoporosis. I take such a concotion of drugs now plus injections.

I really do feel for you and hope that very soon you will know exactly what is wrong and what can be done to help you. In the meantime I send you ((((hugs)))) take care and try not to let it get you down.

Janet

x

14

Ahh thankyou for taking the time to answer.I was dx with Ankylosing Spondylitis some years ago and have a growth on my coxyc and across my right hip…

Thankyou Janet,it appears I have had this since I was 19 and at around age 26 doc told me I had nonespecific MS…

Now a change of doctors got me the tests I needed all these years and an MRI showed masses of lesions on the brain.Even though neuro will not DX me until I have an LP,my doctors told me I have MS.My physio says I have MS.The surgery nurse says I have MS.According to two doctors both told me I see you have been dx with MS…Im also having meds for MS.

Do I realy need LP to be DX,ed?

When everyone is telling me I have MS.Is the LP only to show how agressive it is?

I already know how agressive it is.

I think I have every horrid symptom of MS now and I wish they would ease,over three years they have bit me in the butt.The meds help but they are not a cure.

My new doctors and nurse went right through my medical history and could see what other doctors had written,I except the fact I have MS and glad its not tumors.I knew for years I may of had it,it was just proving it to others who did NOT belive me.One guy at work used to poke me hard for fun and watch me cry out in pain.

I know its all a waiting game and I except that,its just so unfare on all of us to have to wait such a length of time to be DX,ed.Its very unfare.

I just want to be DX and then get the right treatment and help that I and many others truley deserve.I am stuggling daily and I dont want to do this anymore.My doctors are trying there best but feel the neuro is ignoring there requests for help.

I often feel I should be in hospital as I am so ill,maybe I should go then I may get a DX sooner.Silly realy to have to even think that.

Charlie,x

15

Ive just asked a friend who has milder MS and works about swelling,she gets swelling in her hands and feet…

16

Hi i get swellings in my hands and pockets of swelling in my feet.

I tell you what has helped me a lot. Going gluten free. It really works, it helped the burning in my legs, and some of the horrible symptoms and I dropped 12 kilos too lol. It also helps my fatigue.

I had a lumbur puncture it just muddied the waters. I had all the O BANDS one would expect to see in MS, but they do a blood test at the same time and this showed inflammation so if it is in the blood they give a negative MS reading for some reason.

They however, never told me why i had inflammation in my blood, and they never told me why i have loads of O BANDS in my serum…stupid isnt it.

I know lots of people who have had MS diagnosis with negative lumbur puncture. Its a very invasive procedure. However, I have to say it did not give me headache and i never felt it, BUT I was ill for two weeks afterwards.

Its horses for courses. If they think you have MS I cannot understand why they just dont tell you and let you get on with your life.

I mean the world wont come to end if they tell you MS its nuts isnt it. xxx

17

Thankyou MTurner.

I found dairy products upset my stomach and make me feel worse and I have heard of gluten free foods.I think maybe I should try them.I am trying things like goats milk and goats cheese.I avoid milk and cheddar cheese and white bread is not very often we have brown bread.

This swelling is crazy and yes MS is to.It realy does mess with our bodys and minds.

Charlie,x

18

Hi Charlie try Almond milk. YES Almond milk, you can get it in tesco or sainsbury, it is sooooooooooo good for us, as it is high in Vitimin E and magnesium two things we really need.

Do you want to know something funny. I went grey when i was 27 after my hysterectomy. I am now 61. Since i went gluten free and started drinking Almond milk, I AM GROWING BACK BLACK HAIR I really mean it, it is just amazing. It is getting blacker and blacker lol.

I mentioned it to my new private spcialist and she said it was because i had a cealiac intolerance (showed in my blood), and going gluten free has adjusted this problem, and she thinks my body is healing itself as in hair etc lol. I dont know but it is crazy, its really black lol…

IF you want any help with gluten free give me a shout. I cook and bake it now too. The best bread is warburtons brown gluten free bread it is quite good almost normal.

You would be surprised what has gluten in it even SOYA SAUCE lol.

OH DONT USE SOYA MILK soya is not good for us ok. I bought the MS RECOVERY DIET, it was really interesting and has helped a lot of my really bad symptoms without taking drugs.

Yes MS does mess up our brains…xx

19

MTurner I actualy buy Warburtons bread and if thats not available we get Hovis.

Oh I will try the almond milk and Tesco is were I shop.I know my hair is turning grey and very thin now,it breaks easily and I did think of having my long hair cut because its hard to look after it now.I used to have such nice hair.

What pasta can I buy that is gluten free because we love pasta…?

I find pizza causes me to have upset stomach,when I eat white bread my stomach bloats out and I look 4-6 months pregnant.Not a nice look for someone of my age…So I though avoid the cheddar and a friend recommended goats cheese and goats milk.I just feel bloated and sluggish and unwell with other milks.

My body has changed so much even chocolate seems to cause problems.

Oh I wish I could remember things its horrid not to,daily things I have done just missing from my memory.But friends remind me of things and I kind of remember things then.

Is MS RECOVERY DIET available in WhSmiths or online?

Gosh to be honest I will try anything to see if it helps.I love to eat I realy should be 20 stone but nope I can eat and eat,I would love to be able to eat the things I like and I do love home cooking.Could there be a problem with white flour or is there an alternative to it?

Thankyou.

Charlie,x