MS in all its glory

Worried 27

Hello everyone, I was just wondering is it normal to get different symptoms in a short space of time? I was told when I was in hospital that it looked like ms and I'm seeing the neuro in 2 weeks but to be honest I am finding the wait hard.
Since getting out of hospital I've had very few days were I have felt well, it also seems like I'm having more complaints my joints are killing me and I had this horrible numb feeling in the muscle in the back of my leg, and now today one side of my face feels numb.
Are these normal ms symptoms? Or is it just me in my mind thinking everything is ms related? I also spent the day in my pjs just not feeling up to anything, as soon as I would get up to do some housework I just had to sit back down again I just felt completely drained and that's not like me I'm a complete clean freak when it comes to the house ( drives my husband mad he calls me Monica from friends).
I'm really just wondering if all these things are normal symptoms of ms or is it just my mind. Maybe this a stupid question but I'm really only starting to find out things about ms.

bnt

Worried 27 wrote: »

Are these normal ms symptoms? Or is it just me in my mind thinking everything is ms related?

Yes and Yes. There's pretty much no limit to the weird things you can feel due to MS. It's not a disease for hypochondriacs, or for doctors who tell you make an appointment when you feel "anything unusual". But stress can make MS symptoms worse, so my advice to you is to not get stressed about all this, and go with the flow. Que Sera, Sera, and all that. :cool:

@discobreaker The best way I can describe the relapse I had was "sh!t not working". It made me in to an old man for a while, walking like my extremities were talking to my brain by semaphore. I wasn't ill, I was annoyed.

discobeaker

I think i know what you mean bnt. Do you find that if you have the flu or are tired it makes these episodes alot worse when they come about. I know my friend said that he would be in bed for afew days when these episodes start

Worried 27

[/QUOTE]
Yes and Yes. There's pretty much no limit to the weird things you can feel due to MS. It's not a disease for hypochondriacs, or for doctors who tell you make an appointment when you feel "anything unusual". But stress can make MS symptoms worse, so my advice to you is to not get stressed about all this, and go with the flow. Que Sera, Sera, and all that. :cool:


Thanks bnt, I was starting to feel a bit like a hypochondriac ; ) I'll try to go with what other symptoms come my way. Was just a bit freaked out with the whole numbing thing it's a very weird feeling.

byhookorbycrook

Any kind of an infection can make symptoms worse temporarily.

Worried 27

byhookorbycrook wrote: »

Any kind of an infection can make symptoms worse temporarily.

I have had throat infection and was on antibiotics so maybe that has made things worse. I didn't know infections could do that so thanks for that information.

Mushaboom

val444 wrote: »

@Mush

Ah yeah, never the right time. I was always baby mad though, and just got married in June. If things had been normal, we would absolutely be trying by now, so I don't know why I am reluctant, only that I worry about not being on any drugs while trying. I don't wanna take a few years off medication to try and have a baby, only for my MS to get worse! I also feel guilty about bringing a baby into a home where I don't know what the progression of my MS will be, but my husband keeps pointing out that no one knows, having a baby, what the future will bring, and I understand that on a rational level. Doesn't stop the worry though.

I know it's hard not to worry about those things but you can't put off making a future you want because of the things that MIGHT happen. And of all the insanely horrible/cruel things that could happen, MS is kind of low on the list.

I had my first attack after I had my little girl, she has no idea there's anything wrong with me. I love every moment with her and MS is not going to get in our way!

Also, you have a loving hubby and if things get too much for you, he's there to help you out. If he's anything like my hubby, you'll be fine.

And finally, You may only be off medication for 10 months! It can happen the first time you try... BELIEVE ME!

Mushaboom

For Disco and worried:

Here are some information links on MS and for the newly diagnosed. I think you'll find them useful:

http://www.ms-society.ie/pages/living-with-ms/what-is-ms

http://shift.ms/ms/rough-guide/

http://www.mssociety.org.uk/forum

Worried 27

Mushaboom wrote: »

For Disco and worried:

Here are some information links on MS and for the newly diagnosed. I think you'll find them useful:

http://www.ms-society.ie/pages/living-with-ms/what-is-ms

http://shift.ms/ms/rough-guide/

http://www.mssociety.org.uk/forum

Thanks mushaboom I'll check them out

byhookorbycrook

Found this a while back, meant to post it for those who tell us" but sure aren't you doing fine?"It's written for lupus but sums up MS pretty well too.
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Worried 27

Hi everyone, I'm still waiting on LP results and I was talking to one of the docs from the hospital today to see if there back but anyway she was asking if I had anymore symptoms and I was saying I had pain in one of the muscles in one of my legs and I was having pain in the knee on the same side. She Said joint pain is not a symptom but I thought it was ? So now I'm just confused! Can anyone help?

val444

Hi Worried 27

While joint pain is not considered a "direct symptom" of MS, other symptoms can cause this, such as foot drop, muscle weakness, etc, which can cause you to walk differently. Also, and I know it does not apply to you yet, but some of the interferon drugs can actually cause joint pain. Typical, in that what is supposed to help you, can actually add to your symptoms.

@Mushaboom

Oh yes, I know this. And my husband will be wonderful, I know that. I am actually reading a book called "Multiple Sclerosis and Having a Baby" by Judy Graham, which was recommended to me. It is written by a woman who has MS, and is a mom, and she is very informative. One of the things she recommends, is organising help for when the baby is born, whether or not you end up needing it. Did you have any symptoms before having your daughter? And yes, 10 months would be ideal!!!

sadie06

Hi all,

I keep coming back to this thread, and now that I have been referred to a neurologist (awaiting appointment) it seems appropriate to finally post.

I'm 38, female, and here is a summary of my experience so far: End of May noticed tingling in left foot instantly if I crossed my legs. Thought it was a pinched nerve. Symptoms slowly spread to other foot, up calves and thighs, hands and across stomach. Panicked when in early July I felt tingling in scalp and across face. Visited emergency doc who prescribed a drug for peripheral neuropathy, and flippantly added that if it didn't work, I'd be referred on to be checked for MS.

I was uncomfortable with the drug she prescribed, so phoned my own GP the next morning who advised me not to take the drug, and to come in for a check up. He suggested that all of the symptoms could be due to stress. I had just finished a degree and am a mother of two, and I knew I had put myself under ridiculous pressure to do well, so that made sense.


He advised rest, relaxation, good food etc, so I did just that. I made an effort to get to bed earlier (I am a night-owl, but also an early bird) and had a great holiday full of fun. In those few weeks, however, I developed new symptoms. Some are intermittent, such as slurred speech, difficulty retrieving words, and numb lips. Some are ever-present, such as hyper-sensitivity on the back of my thighs and calves; a feeling that there is a layer of material against them. The original symptoms also persisted but to a lesser extent. Where there had once been tingling in my extremities, there is now numbness, my nose and left foot being the worst.


I returned to the GP yesterday, explaining that I have given the rest/relaxation idea my best shot, so I have been referred to a neurologist in Tallaght hospital. I have no idea how long I'll be waiting. I will be paying to go private initially, and hope to go public if I am going to be in this for a long journey.


I know there are several avenues to be explored, but I myself have a gut feeling that this is neurological rather than a vit B12 problem, a pinched nerve, or any of the other less scary possibilities. This is probably because my brain has let me down before. I had epilepsy from the age of 9-15, and have coped with depression on and off also.

So that's me. I just wanted to say hello as it's very hard to talk to anyone about my worries. Also, I love the thread title!

byhookorbycrook

I would sometimes slur my words a small bit if tired or if fighting an infection. If you are going privately to a neuro, I would suggest ringing the secretary and saying you will take any cancellation that comes up.

I too had MS thrown at me flippantly in a list of other things,by a consultant. I remember that a nurse friend and myself laughed at the time,as I have disc problems and the leg not co-operating seemed to me to be tied to that.

The biggest difficulty with MS is the diagnosis, there's no conclusive test. I suggest you start keeping a diary of your symptoms and when they occur so you can talk to the neuro about them.(Eg slurred speech if very warm/tired or whatever)

sadie06

Thanks for the reply bhobk! I am jotting everything down as I go along, and have even thought of minor physical ailments I had during my 20's that could have been early symptoms.

I've learned from this thread not to expect a definitive answer very quickly!

byhookorbycrook

I made the mistake of attributing too many things to MS, until I knew what to look for and why. But make sure you write it all down anyhow, because there's nothing worse than waiting ages for an appt and being in the car on the way home saying "Blast, I meant to say x..."

coughdrops

Hi everyone

I didn't get notifications on the updates to the thread, so sorry for not checking in.

@Val444- thanks for posting about the pre-pregnancy blood tests. It's definitely something I should consider. Just one thing though, initially like you I was told to try Copaxone for 2 years before trying for a baby (which will take me up to Feb 13). However the last time I spoke to the Copaxone nurse she said that if I were to get pregnant while on it, it would be fine. I guess it would be better to come off it first, but if I did get pregnant unexpectedly - these things happen - it would be ok? Anyway I didn't really question it at the time as we weren't thinking of kids then, but now it's something that is really playing on my mind.

Worried 27

Val444
Thanks for clearing that up for me. I've got my appointment with the neuro on Monday finally looking forward to getting things underway and be finally going to get some answers to what is or possible might be. I don't expect answers straight away but once something is happening I feel better about things. This thread has been a great source of information and support.

byhookorbycrook

If it were me,I think I'd wait until I came off to try,to be honest. There are so many side effects with all these drugs,I'd not risk it.
"The safety of glatiramer during pregnancy and breast-feeding is not known. Talk to your doctor if you are planning a pregnancy, if you are pregnant, or if you are breast-feeding."

http://www.webmd.com/multiple-sclerosis/glatiramer-acetate-for-multiple-sclerosis

bnt

The way I understand it, any new drug is going to have a pregnancy contra-indication slapped on it straight away, simply because the effects are so unpredictable. The thalidomide birth defects may have happened over 50 years ago, but they are still a stark warning to anyone taking a new drug - and to researchers working on them. If in doubt, do not fall pregnant while taking any drugs - that's the takeaway message!

(Personally, since I know that MS is at least partly genetic, I am not going to have any children. It stops here.)

byhookorbycrook

I'm the same Bnt, decided not to have kids. Apart from the slight genetic risk, I don't want them havibg to change my nappies in years to come if things go pear-shaped.

mamakitten

bnt wrote: »

(Personally, since I know that MS is at least partly genetic, I am not going to have any children. It stops here.)

I hope you dont mind me quoting you but your comment made me feel very sad. I dont have MS but my husband does, he was diagnosed 3.5 years ago and is currently doing reasonably well on Copaxone. Although we had our children before he was diagnosed, I dont think knowing about the MS would have changed that. His thinking is that he wont let MS dictate how his life should go, whatever happens we will deal with it and MS wont limit our choices. Our kids are our joy and our life, yes there is a slight genetic risk but tbh you roll the die when you get pregnant anyway, there are so many things that can possibly go wrong during foetal development. The chances of our children developing MS is miniscule compared to the much more likely scenario where they grow up healthy and have good lives.
I am not dismissing your opinion by any means, I just wanted to put across the other side.

byhookorbycrook

It's more likely to be passed on the female line. I take your point though, if people stopped to think about what could go wrong,they'd never have children. It's up to each couple to make their own choice.

sadie06

I'm a little gobsmacked to be told that an initial neuro consultation will cost 350 euro. I expected about 200. Is that the norm, or should I phone around?

So regretting dropping my health insurance now!

Worried 27

sadie06 wrote: »

I'm a little gobsmacked to be told that an initial neuro consultation will cost 350 euro. I expected about 200. Is that the norm, or should I phone around?

So regretting dropping my health insurance now!

I've got my appointment Monday with the neuro. We have insurance and I have to pay 250 I was shocked when I got the letter

coughdrops

From memory I paid €250 and then was able to claim it back from insurance, but I'm not 100% sure on that.

Worried 27

coughdrops wrote: »

From memory I paid €250 and then was able to claim it back from insurance, but I'm not 100% sure on that.

I must look into that thanks

coughdrops

No problem... I forget a lot about my initially consultation, I don't think I took as much in as I could have!

Worried 27

coughdrops wrote: »

No problem... I forget a lot about my initially consultation, I don't think I took as much in as I could have!

Do u mean that it didn't sink in what they were saying or that you did not ask all the questions u should have? My husband is coming with me thank god because when they said in the hospital that it looked like ms I froze only for him asking the questions I'd still not be sure what's happening! I took the advise for this forum of keeping a notebook of any questions and any symptoms I have! It's nearly full I've written that much down but I'm hoping that's a good thing!

coughdrops

A bit of both. My mum and husband came with me, and mum made some notes as she went along.

To be honest, I think it's just I've forgotten a lot of what was said during that conversation. I was in the middle of a bad relapse and was sick of feeling unwell and not knowing why. So, once he said I'd MS I think my first reaction was relief (I knew there was something wrong!) as I had a name for it.

You're right to take notes, and have a list of questions with you. The appointments can be over quickly, so it's good to have a few points to keep you on track.

Edited to add- MS wasn't diagnosed until after tests in hospital a few weeks later, but in consultation he said he was almost certain I had it