MS in all its glory

byhookorbycrook

I always find it helpful to keep a note of what I am prescribed and in what dosage etc.I'd guess that it was one relapse and then a slow recovery. Hope you get sorted tomorrow.

ash23

Can anyone tell me about relapses?
What exactly is a relapse? And what differentiates it from just usual symptoms (caused by the damage to the myelin)?

byhookorbycrook

"What a Relapse Is:

A relapse is a clinically significant event (meaning that it has outward signs and/or symptoms) caused by an MS lesion on your brain or spinal cord. It is either a worsening of symptoms that you already have, or the appearance of new symptoms. Relapses are also referred to as "exacerbations," "attacks" or "flares."

In order to be a true relapse, the episode has to last at least 24 hours. There are such things as “mini-relapses,” meaning a quirky symptom which lasts for a couple of minutes up to several hours and then goes away, but these are not true relapses. True relapses usually last several weeks, although they can be as short as a couple of days or as long as several months. A relapse must be separated from a previous relapse by at least a month. This is to distinguish it from symptoms that may be from a previously active lesion (which can change as inflammation subsides, remyelination occurs and/or scar tissue forms).

http://ms.about.com/od/multiplesclerosis101/p/ms_relapses.htm

ash23

Thanks for that. So, by that logic I've had 3 relapses this year. One numb leg in Feb which lasted a couple of months and went away. One episode of ON in August which lasted a month and went away. And another episode when the numb leg came back a couple of weeks ago and is still numb.

I wasn't sure if the leg counted as a relapse because it's caused by a lesion as opposed to the ON which left no scar tissue or lasting mark.

Darragh93

didnt no where else to post this sorry guys? I have had a severe headache for months now, roughly 6 to 8 months if not more,i have been recording all of my symptoms with it and an MRI scan showed up small demyelination and left parietal Heamatoma after trauma to head, MRI a few months later showed no heamatoma but still the same demyelination,(white matter on the brain), here are some of my symptoms that come and go, numbness and tingiling in right side of my body(leg arm and face), memory loss(going to say something but forgetting it most of the time, confusion) Balance coordination not great sometimes, leeking after going toilet, maybe 2/3 mins later, bad shake in my right hand when headache is at its worst, masive mood swings/depression and being nervous of swallowing sometimes. I am a 19year old male and extremely scared seeing a neurologist but he just thinks migraine but i know it cant be. Please somebody help i am prepared for the worst just incase but atleast i no i can get help then rather than stupid migraine meds that will not work for me, also spinal tap came back clear for me just slightly high protein?

byhookorbycrook

Sorry to hear you are so confused and scared. Do I understand you correctly, you are now under the care of a neuro?

Darragh93

yes but i dont really understand him he jus keeps emplying migraine, i no what migraine and its clearly not, he is planning nerve block for the head pain but alot if other people have suggested MS is a possibility even without LP being positive? others say brain damage from the assault? i Have no real support from any family members as i moved out at 17 just my girlfriend to support me and i have little knowledge of this, i am really scared and none the wiser to whats actually wrong just a stupid neuro that seems to think its migraine...:(

Shtanto

Looks like I'll have to start an LDN thread over on health. It works for me, but isn't easy to get unless you can talk your GP or neuro into it.

You have to fight back. Use Google. It is your weapon. I can teach youa ll about LDN, but it'd be better if Dr. pat Crowley explained it. He's on Youtube. If you watch the videos I watched, you'll know what I know. Also worth a look are Dr. Gilhooly from Glasgow who ran a CCSVI trial and Dr. Phil Boyle who helps couples conceive.

byhookorbycrook

LDN is not as hard to get as it once was, but is not evidenced based for MS.

Big C

A friend is considering chemo as treatment for secondry progressive. My neuro was going to put me on it too but changed his mind ???? Has anyone had chemo for MS

ElleEm

Big C wrote: »

A friend is considering chemo as treatment for secondry progressive. My neuro was going to put me on it too but changed his mind ???? Has anyone had chemo for MS

Wow, I didn't even know this was an option.

val444

Darragh93 wrote: »

yes but i dont really understand him he jus keeps emplying migraine, i no what migraine and its clearly not, he is planning nerve block for the head pain but alot if other people have suggested MS is a possibility even without LP being positive? others say brain damage from the assault? i Have no real support from any family members as i moved out at 17 just my girlfriend to support me and i have little knowledge of this, i am really scared and none the wiser to whats actually wrong just a stupid neuro that seems to think its migraine...:(

Hi Darragh,

I'm sorry you are having such a tough time. The only advice I can offer is to listen to the neurologist though. He may not be giving you the answers you think are right but he has studied this field for a long time.

If you are really unhappy, could you perhaps look for a second opinion?

byhookorbycrook

Big C wrote: »

A friend is considering chemo as treatment for secondry progressive. My neuro was going to put me on it too but changed his mind ???? Has anyone had chemo for MS

Is that Campath?

Worried 27

Hello everyone hope everyone is doing well!

Darragh93

When I first got sick it was from a severe pain in my head so much that I could not even touch my hair, I was sick and lost the feeling in the right side of my face at the time I was convinced I was having a stroke or that there was even a tumor there I've not felt pain like it! I often heard people talk about migraine and I thought its just a headache! When the hospital said it was migraine I was shocked I thought they have it wrong there is no way it's just a migraine! My neuro prescribed preventive tablets and I've now been on them 4 months and I'm feeling the better of them! I was also diagnosed with ms at the same time and it was not something I had ever considered would affect me!

All i can say is I know it's hard the unknown but listen to ur neuro I'm sure he knows what he is doing! Really hope you start feeling better!

ash23

Hi all,
I need some advice please.

I have been officially diagnosed with MS and am starting on Copaxone. I was given the prescription by the hospital and am collecting it later from the chemist.
However, I'm not sure what happens next. My next neuro appointment is in 4 months and they didn't say anything about anything really.
Do I go to the GP to get them to show me how to inject or is it easy enough? Is there anything else I should be doing or considering?
The neurologist was lovely but after all the discussion about diagnosis and treatment options, there wasn't much in terms of "what happens next".
Thanks

Worried 27

ash23 wrote: »

Hi all,
I need some advice please.

I have been officially diagnosed with MS and am starting on Copaxone. I was given the prescription by the hospital and am collecting it later from the chemist.
However, I'm not sure what happens next. My next neuro appointment is in 4 months and they didn't say anything about anything really.
Do I go to the GP to get them to show me how to inject or is it easy enough? Is there anything else I should be doing or considering?
The neurologist was lovely but after all the discussion about diagnosis and treatment options, there wasn't much in terms of "what happens next".
Thanks

Hi ash

When I got diagnosed the neuro organised the ms nurse to call me to organise a visit to show me how to injected properly! Have you not heard from her?

ash23

My appointment was only yesterday. The neuro didn't mention an MS nurse. He arranged for me to get steroid treatment in another hospital but said nothing else about anything.

Worried 27

ash23 wrote: »

My appointment was only yesterday. The neuro didn't mention an MS nurse. He arranged for me to get steroid treatment in another hospital but said nothing else about anything.

I really don't know then sorry! Unless you have to get the steroid treatment first and then start on the ms injection! Is there anyway maybe you could ring and get it cleared up? Sorry I'm not much help!

ash23

No you're grand. I didn't think to ask these questions before I left. I might make an appointment with my GP for today and put the questions to them.

Worried 27

That happens I think you get so overwhelmed with the diagnosis everything goes out of your mind! I just sat there my husband thank god asked all the important questions! Only for him I probably would not have remembered anything! I am sorry to hear its ms! I really hope your treatment and all goes well for you! I'll be thinking of you the first few weeks and the hardest! I'm starting into my third month now its funny Its just part of my normal routine now!

val444

Hi,

I was in exactly the same position a year ago. For me, a Copaxone specific nurse called me once I had collected the prescription, and made an appointment to call to my house a couple of weeks later. She was lovely, Ursula is her name, she covers all of Munster, if that is where you are.

She showed me how to do it, and I did the first injection with her there. She has called a couple of times since too.

If you are in Munster, I could PM you her number maybe?

Let me know.

ash23

val444 wrote: »

Hi,

I was in exactly the same position a year ago. For me, a Copaxone specific nurse called me once I had collected the prescription, and made an appointment to call to my house a couple of weeks later. She was lovely, Ursula is her name, she covers all of Munster, if that is where you are.

She showed me how to do it, and I did the first injection with her there. She has called a couple of times since too.

If you are in Munster, I could PM you her number maybe?

Let me know.

I picked up the prescription and gave myself the first injection. Feck it, it's only an injection. It was fine initially but after a minute it hurt a fair bit but that passed after a few minutes.

Just decided to bite the bullet and get it over with.
I'm in the west val but thanks for the offer.

byhookorbycrook

Ash, the drug companies usually have their own nurses, might be worth contacting them. Well done on getting the injection done.

ElleEm

Well done, Ash!! I looked up loads of youtube videos then had a visit from the Copaxone nurse in Dublin in preparation for my first injection.

I got prescribed Difene gel for the injection sites at first too, cos I was all itchy and lumpy, but loads of people swear by ice packs.

If you get a visit from the Copaxone nurse, she will probably give you little plastic things for freezing, which are great. You will also get an Autoject, which is a little injecting pen thing. Sometimes that's easier on the skin than the syringe. The nurse will also give you a bag and a little box for transporting and puttin in the fridge. She gave me a little notebook too, with pics of all the injection sites in it. It was helpful at the start to remind you where you have injected previously (you are supposed to rotate your sites every day).

Good luck and well done again. You are very brave!!!

byhookorbycrook

For those injecting and thinking of travelling over Christmas, make sure you get the letter/card that says it's ok for you to carry it aboard.

I got the rather crappy news that I am JC+ at the weekend. This, for the non-Tysavri people means I have gone from 30,000 to one,when I started to 250 to one for risk of contracting the rather awful PML.
I have decided to chance it for the moment, but am hoping to get on Campath when it returns to the market.

val444

byhookorbycrook wrote: »

For those injecting and thinking of travelling over Christmas, make sure you get the letter/card that says it's ok for you to carry it aboard.

I got the rather crappy news that I am JC+ at the weekend. This, for the non-Tysavri people means I have gone from 30,000 to one,when I started to 250 to one for risk of contracting the rather awful PML.
I have decided to chance it for the moment, but am hoping to get on Campath when it returns to the market.

Oh god, I'm sorry. I am mostly likely switching to tysabri after Christmas and I am a bit terrified! Were you gutted?

I am in the middle of three days of IV steroids at the moment, for the second time in six months. Copaxone just ain't doing it for me.

coughdrops

Morning all

@ash23 I am on Copaxone too, I have the number for the nurse that covers North and West. Fair play for giving yourself the first shot. It can sting like hell afterward, so I try to cool the area before hand. Try to rotate the areas (usually bum, tum, thighs) to give each area a break. I can PM you her number if you want it. I can't remember now if I contacted her first, or if she rang me

@byhookorbycrook I'm not familiar with tysavri, but sorry to hear it's not going as you hoped.

Hope the rest of you are well. Work is mental this week in an attempt to wind up for Christmas, half afraid that when Saturday finally arrives I'll be too exhausted to do anything.

CD

ash23

Thanks all. It stung like hell for a bit but that wore off and I've no lumps or bumps or bruises so that's good.

Coughdrops thanks for that but the pharmacist was getting on to the high tech drug dept. to get them to contact me.

I'm in for IV steroids all the rest of this week. I am horrifically tired at the moment. I actually had a little cry when my alarm went off this morning. It's like I'm just getting through my waking hours until I get to go back to bed.

Byhookorcrook I don't fully understand the Tysabri thing (my neuro referred to it as jungle juice lol) but I'm sorry to hear you had bad news.

Jeeze, I never even thought of transporting it and keeping it cool. I was late for work today because I left the medication in my boyfriends fridge and had to turn back for it, then I forgot that I had to drop it to my house so had to turn back from work. There is a fridge in work but no way was I putting it in there!

Just a matter of getting used to it I guess.
Thanks again everyone. It's nice to hear from voices of experience rather than learning from my mistakes lol.

coughdrops

Hi ash

Re keeping them in the fridge, they are ok sitting out. I take out a week's worth at a time. As long as they aren't exposed to heat (and really this time of year, that ain't gonna happen!!), they are fine. Just don't leave them beside a rad or something.

val444

byhookorbycrook wrote: »

For those injecting and thinking of travelling over Christmas, make sure you get the letter/card that says it's ok for you to carry it aboard.

I got the rather crappy news that I am JC+ at the weekend. This, for the non-Tysavri people means I have gone from 30,000 to one,when I started to 250 to one for risk of contracting the rather awful PML.
I have decided to chance it for the moment, but am hoping to get on Campath when it returns to the market.

Oh god, I'm sorry. I am mostly likely switching to tysabri after Christmas and I am a bit terrified! Were you gutted?

I am in the middle of three days of IV steroids at the moment, for the second time in six months. Copaxone just ain't doing it for me.