MS in all its glory

Carrie6OD

Undiagnosed16 wrote: »

Hi,

I was wondering if anyone could get me an idea of how long it takes to get lumbar puncture results? Booked in for one on Dec 16th (a Friday) and was wondering if there's any chance of having the results before Xmas given how close it will. I will of course ask on the day too but thought I'd get an expectation in advance to prepare myself for the possibility I'll be waiting on the results over Xmas. Having the procedure in the Galway Clinic. Thanks.

I got mine done in the hermitage in Dublin and it took about two weeks, possibly less, but the doctor posted me the results and it was about 2 weeks after the procedure. Good luck with it

Carrie6OD

Salmotrutta wrote: »

Had MRI couple of weeks ago and follow up with neuro today. 2 years since I last met him. MRI results were great, no new lesions and existing lesions reduced in size. Gilenya appears to be working well. Absolutely delighted, was a bit nervous going in...
Neuro was saying the newer medications are really reducing the severity of the disease - he used to see some really devastating relapses (mentioned quadriplegia :eek: ) but says he hasn't seen a really bad one for 10 years now, and fewer people progressing to SPMS. Encouraging to hear!

Thank you for writing that! It has made my day to read such positivity

vmb

Yesterday started my 3st month after Lemtrada.

Sadly, I am starting a relapse and I feel desperate. 3 treatment failures in 2 years, and a lot of lesions are spreading without control.

When people see me, they can't appreciate my problems. I walk well, but I have LOADS of invisible problems that are ruining my life. I've tried to talk to my neuro about them, but hadn't outcome.

He's a good Neuro, but maybe they are more focused in MRIS and walking / vision problems. I understand they are a valuable resource but...

I have an appointment for the next MRI on Jan 10th, so now I just can sit and wait for bad news as usual.

My depression is also hitting me really hard,I feel I can't manage the situation.

I would beg for a manageable MS, but obviously it is not my case.

FCKU MS:mad::mad::mad:

byhookorbycrook

Ah b*gger, VMB.I would make an appointment with your neuro again and see what he can do to help. Depression and stress will make our MS worse, so sorry things are so hard for you now.

Lollipops23

Fattigue has been horrendous for the last 4-5 days. It's crap because everyone just assumes you're hungover. Am making a concerted effort to not party too hard this Xmas season, as I don't need a relapse come January.

vmb

I visited my neuro and he is not sure. If symptoms get worse I'll be admitted and will receive 3 days of corticoids. Just after the visit I got candidiasis infection, something usual after lemtrada. It is not dangerous, but as my lymph count is 0.3 now I have to be careful.

As a good thing, I've received a great job offer today and I will start on January.

Hopefully next year will be better for all of us!

eimsRV

Hi all

Over the last 2 years I've had bad pains in my teeth and become terrified of even going to a dentist. Can any one recommend a gentle dentist in Dublin? And anyone else notice a difference in their teeth since diagnosis?
Thanks

joefromireland

On Thursday, 17th November in Trinity Biomedical Sciences Building, MS Ireland hosted an information event featuring a panel of MS experts.

See his talk Dr. Conor Kerley, PHD, BSc, H.Dip, MINDI, DCU: Nutrition and Lifestyle Strategies to Combat MS

I like to hear your views on these videos, could what you eat have a huge effect on how MS affects you and do you agree with the professor that the topic of NNT should not be discussed with MS patients,the number needed to treat (NNT) is an epidemiological measure used in communicating the effectiveness of a health-care intervention, typically a treatment with medication. The NNT is the average number of patients who need to be treated to prevent one additional bad outcome (e.g. the number of patients that need to be treated for one to benefit compared with a control in a clinical trial). The higher the NNT, the less effective is the treatment.

NNT numbers needed to treat

Full video 1 hour 53 minutes long, 3 experts talking about MS On Thursday, 17th November 2016 in Trinity Biomedical Sciences Building

Thanks to MS Ireland and Novartis Ireland Ltd for sponsoring the event

echo beach

joefromireland wrote: »

I like to hear your views on these videos, could what you eat have a huge effect on how MS affects you and do you agree with the professor that the topic of NNT should not be discussed with MS patients,the number needed to treat (NNT) is an epidemiological measure used in communicating the effectiveness of a health-care intervention, typically a treatment with medication. The NNT is the average number of patients who need to be treated to prevent one additional bad outcome (e.g. the number of patients that need to be treated for one to benefit compared with a control in a clinical trial). The higher the NNT, the less effective is the treatment.

The NNT is a useful way of describing how effective a treatment is in a given population but is less useful in knowing how effective a treatment will be in a particular patient, which is what a doctor and their patient usually care about. As you say it is an epidemiological measure and as the professor said it isn't the measure she uses as a clinician.

An NNT of 5 does mean that 4 out of 5 of those who take the drug will not achieve the aim of treatment, e.g. cure or remission, but they may have some benefits. No medicine is 100% effective (NNT =1) and a figure of 5 is a lot lower than that of many well established and standard treatments for a variety of conditions. Only a patient and their doctor can decide if a 1 in 5 chance of success is worth taking but many patients are happy to try anything, even if the odds are 1:100 or 1:1,000. What they really want is HOPE.
Another important figure is NNH, number needed to harm, which will tell you how likely particular side-effects are but again cannot tell you if a particular patient will suffer from that side-effect.

byhookorbycrook

eimsRV wrote: »

Hi all

Over the last 2 years I've had bad pains in my teeth and become terrified of even going to a dentist. Can any one recommend a gentle dentist in Dublin? And anyone else notice a difference in their teeth since diagnosis?
Thanks

We MS-ers seem to be prone to TMJ disorder. I underwent several trips to the dentist and even had an extraction. I eventually got referred to a specialist in Dublin and got a mouth guard to wear at night and it solved the problem on the whole.
This is him:

http://drdermotcanavan.ie/commonproblems.html

eimsRV

byhookorbycrook wrote: »

We MS-ers seem to be prone to TMJ disorder. I underwent several trips to the dentist and even had an extraction. I eventually got referred to a specialist in Dublin and got a mouth guard to wear at night and it solved the problem on the whole.
This is him:

http://drdermotcanavan.ie/commonproblems.html

Thank you, will make an appointment in January. See if it helps

embee

hi folks,

Ye are all very quiet! Hope ye had a nice Christmas and New Year. Just wondering, have any of ye had sudden onset of pain in limbs? I've woken up yesterday with bad pain in both my wrists, worse on the left wrist, which is unfortunate as I'm left-handed. I generally haven't had pain as part of my symptom profile. I haven't fallen or done anything to cause an injury, so I'm wondering if this is MS related? Paracetamol hasn't even made a dent in the pain. When also should I call the MS nurse? Once it's gone on past three days? Also both little fingers are numb.

Kurtosis

embee wrote: »

hi folks,

Ye are all very quiet! Hope ye had a nice Christmas and New Year. Just wondering, have any of ye had sudden onset of pain in limbs? I've woken up yesterday with bad pain in both my wrists, worse on the left wrist, which is unfortunate as I'm left-handed. I generally haven't had pain as part of my symptom profile. I haven't fallen or done anything to cause an injury, so I'm wondering if this is MS related? Paracetamol hasn't even made a dent in the pain. When also should I call the MS nurse? Once it's gone on past three days? Also both little fingers are numb.

Hi embee,

To be honest anyone here isn't going to be able to advise on whether this is MS related or when to consult a health professional about this as it really depends on your own clinical situation. If in doubt I'd say give the MS nurse a call, no harm in it. Hope you're doing better!

Carrie6OD

Happy New Year to all.
My mobility is deteriorating a bit and my neuro physio has told me to up the exercise. I was wondering if anyone has experience of using a personal trainer? I would love to find someone who can help me with my fitness while bearing in mind my limitations. Somebody based in Kildare would be ideal, but Dublin also good.

LegacyUser

Hello all,
I've been reading some of this thread over the last few days as I've been having some worsening neurological type symptoms for a number of weeks now. A few years back I had an MRI while being investigated for a possible prolactinoma. As it happens I didn't have one but the scan showed some white spots on my brain which the Neuro mentioned could be a sign of MS but was happy to put them down as migraine lesions as I wasn't symptomatic of anything. Roll on four years and three babies, the youngest of whom is only three months. During this time I have been pretty well bar pregnancy complaints and episodes of nerves jumping in various spots around my body. No one seemed to think that was anything of note. A few days after Christmas I developed a burning sensation in both my feet which I put down to wearing high heels for the first time in ages for a wedding. After a week of this really bothering me at night I made the mistake of googling it and came up with all sorts of scary stuff like nerve damage so I went to the GP who checked sensation, balance, reflexes etc and was happy with them but referred me to a different neurologist for a second opinion because of the previous MRI. Going privately my appointment wasn't until March. This weekend I got a very sore eye and numb sensation on my chin and by my eye so I went back to the doctor who was unhappy with these new symptoms so has arranged for me to be seen by the medical assessment unit on Friday where they've told me to be prepared to stay for the day while they run tests. Aside from an MRI and bloods does anyone have any idea of the type of tests I could be facing?

Lollipops23

Called the neurology nurse to ask her to order my bloods next week, and asked her while I had her about the results of my MRI (back in November!!).
Turns out the one whopping great lesion on my frontal lobe has shrunk significantly and there's been no new lesions or lesion activity. Gilenya is working for me!!

byhookorbycrook

That's great news, delighted for you.

byhookorbycrook

embee wrote: »

hi folks,

Ye are all very quiet! Hope ye had a nice Christmas and New Year. Just wondering, have any of ye had sudden onset of pain in limbs? I've woken up yesterday with bad pain in both my wrists, worse on the left wrist, which is unfortunate as I'm left-handed. I generally haven't had pain as part of my symptom profile. I haven't fallen or done anything to cause an injury, so I'm wondering if this is MS related? Paracetamol hasn't even made a dent in the pain. When also should I call the MS nurse? Once it's gone on past three days? Also both little fingers are numb.

Hi Embee, I had very sudden onset of that pain a few month after diagnosis. I brought a load of kids to Croke park and was really sore the following day. I presumed I had overdone it, but it's permanent for me. :mad: i presumed every MS had it for years and was quite amazed to find some don't.

I have very high "tone" - hypertonicity (sp??) which means all my muscles are sore, all the time, as if I had done really strenuous exercise. Now and again the neuro and I discuss baclofen for this but then generally agree that if I loosen up, I'll probably fall far more frequently. Fampyra has helped my legs and stretching also helps. I take Vimovo (an NSAID) from time to time when it gets really bad and i also use voltarol gel on my lower back and rib cage. Meh to paracetamol, no more use for that than Smarties. If you are left handed, your left hand does more work so is likely to be hit more, if it is due to hyperwotsit.

I'm hoping that it's only short term for you.

byhookorbycrook

Carrie6OD wrote: »

Happy New Year to all.
My mobility is deteriorating a bit and my neuro physio has told me to up the exercise. I was wondering if anyone has experience of using a personal trainer? I would love to find someone who can help me with my fitness while bearing in mind my limitations. Somebody based in Kildare would be ideal, but Dublin also good.

Carrie, I bought a recumbent exercise bike over Christmas and find it good. It's easier to get on and off than a regular exercise bike.
This is the Beast
http://www.elverys.ie/elverys/en/Elverys/Fitness/Home-Gym-Equipment/Excercise-Bikes/ProForm-CSX-325-Recumbent-Bike/p/000000000001070043

I also keep a "Diary of Shame " :D Where I record what I did and didn't do and why, it pushes me to do a bit most days.

Set the alarm on your phone for every hour when you are at home and force yourself to do something- get off the couch and walk to the backdoor and back a few times. It will make a difference. Good luck.

ETA If anyone is thinking of getting the bike, you can pay €50 delivery and Elvery's Elves will deliver it AND assemble it. There would have been divorce in this house if we tried to assemble it ourselves.

Carrie6OD

byhookorbycrook wrote: »

Carrie, I bought a recumbent exercise bike over Christmas and find it good. It's easier to get on and off than a regular exercise bike.
This is the Beast
http://www.elverys.ie/elverys/en/Elverys/Fitness/Home-Gym-Equipment/Excercise-Bikes/ProForm-CSX-325-Recumbent-Bike/p/000000000001070043

I also keep a "Diary of Shame " :D Where I record what I did and didn't do and why, it pushes me to do a bit most days.

Set the alarm on your phone for every hour when you are at home and force yourself to do something- get off the couch and walk to the backdoor and back a few times. It will make a difference. Good luck.

ETA If anyone is thinking of getting the bike, you can pay €50 delivery and Elvery's Elves will deliver it AND assemble it. There would have been divorce in this house if we tried to assemble it ourselves.

Thanks a million. I will defo look into that bike. I found a trainer who is very good and is helping me with my strength. We'll see how it works... And great tip about moving around. Will do that too. Nothing is easy...

byhookorbycrook

Carrie6OD wrote: »

Thanks a million. I will defo look into that bike. I found a trainer who is very good and is helping me with my strength. We'll see how it works... And great tip about moving around. Will do that too. Nothing is easy...

Absolutely not. I manage to get up on my horse (and back down again) with the help of a big mounting block, a kind horse and at least one helper. I miss the days that I could go to the stable yard anytime I wanted and head off up through woods or down the road. I lack the discipline to do OT/Physio exercises, sitting on a horse, you don't have much choice but to use your legs. so it's worth the (big amount of) money I pay for his keep each month.

embee

byhookorbycrook wrote: »

Hi Embee, I had very sudden onset of that pain a few month after diagnosis. I brought a load of kids to Croke park and was really sore the following day. I presumed I had overdone it, but it's permanent for me. :mad: i presumed every MS had it for years and was quite amazed to find some don't.

I have very high "tone" - hypertonicity (sp??) which means all my muscles are sore, all the time, as if I had done really strenuous exercise. Now and again the neuro and I discuss baclofen for this but then generally agree that if I loosen up, I'll probably fall far more frequently. Fampyra has helped my legs and stretching also helps. I take Vimovo (an NSAID) from time to time when it gets really bad and i also use voltarol gel on my lower back and rib cage. Meh to paracetamol, no more use for that than Smarties. If you are left handed, your left hand does more work so is likely to be hit more, if it is due to hyperwotsit.

I'm hoping that it's only short term for you.

I have the same problem, massively increased tone in my legs, am not allowed fampyra as I've a history of juvenile epilepsy. I rang the MS nurse and my neurologist is going to prescribe lyrica or gabapentin for the neuropathic pain. Not sure I want to be hepped up on painkillers all the time, but it's been well over a week and I am still experiencing the shooting pains in my left hand. I've had a horrendous headache since Tuesday, the fun never stops with MS.

byhookorbycrook

I use gabapentin, for me it doesn't kill the pain entirely but makes it far more bearable. It has been associated with weight gain, I know I have gained quite a lot since starting it, but that may be more to do me being a greedy cow and not getting the same exercise that I used to.

byhookorbycrook

I use amitriptyline at night too, took me a while to get it sorted as too early and I was in pain during the night, too late and I was zonked the day after.

misstearheus

Question for any MSers in Galway... Am just wondering if someone could please tell me, are they located in a Dept. inside Merlin Park Hospital, or do they just have an Office somewhere in the Merlin Park locality of Galway City? I have an address for Curragrean Merlin Park Galway, but no idea if that's Merlin Park the Hospital or Merlin Park the area....

AilsOD

misstearheus wrote: »

Question for any MSers in Galway... Am just wondering if someone could please tell me, are they located in a Dept. inside Merlin Park Hospital, or do they just have an Office somewhere in the Merlin Park locality of Galway City? I have an address for Curragrean Merlin Park Galway, but no idea if that's Merlin Park the Hospital or Merlin Park the area....

I assume it's the Western branch of MS Ireland you're talking about? That is their address but it has nothing to do with the hospital. They are in a centre called Cheshire House and it's actually in Roscam, the first right after the shops heading up to Ros Caoin/Boireann Beag (If you're familiar with the area) Best thing to do is to give them a call and they can help you further

AilsOD

Lollipops23 wrote: »

Called the neurology nurse to ask her to order my bloods next week, and asked her while I had her about the results of my MRI (back in November!!).
Turns out the one whopping great lesion on my frontal lobe has shrunk significantly and there's been no new lesions or lesion activity. Gilenya is working for me!!

Whoohoo that's brill news delighted for you! I got similar news last week, MRI done in June got results at my yearly check up and it's all good! Yay for Gilenya is all I can say!

byhookorbycrook

Interesting chat with our neuro nurse yesterday. Rituximab is on the point of being funded- it might be an option for people coming off Tysabri.
https://multiplesclerosisnewstoday.com/2016/04/21/lymphoma-drug-rituximab-highly-effective-treating-relapsing-ms-study-sweden-reports/



And might be used for bridging those who are progressive and waiting on https://www.mssociety.org.uk/ms-research/treatments-in-the-pipeline/ocrelizumab

Carrie6OD

byhookorbycrook wrote: »

Interesting chat with our neuro nurse yesterday. Rituximab is on the point of being funded- it might be an option for people coming off Tysabri.
https://multiplesclerosisnewstoday.com/2016/04/21/lymphoma-drug-rituximab-highly-effective-treating-relapsing-ms-study-sweden-reports/



And might be used for bridging those who are progressive and waiting on https://www.mssociety.org.uk/ms-research/treatments-in-the-pipeline/ocrelizumab

I'm getting my first infusion next week. Please God it helps.

byhookorbycrook

With ritixumbab?Best of luck, keep us posted. Do you mind me asking if you are with Laya?