MS in all its glory

Loveinapril

Carrie6OD wrote: »

This is my first pregnancy with MS (well, with diagnosed MS) and I'm kind of petrified about everything and about after the baby comes. I'm really trying to mind myself. Hope you are too!

I have gone into organisational overdrive just in case the MS gets worse in the last few weeks or I relapse after the baby gets here. I had most things bought and organised by about 26 weeks. I started batch cooking a couple of weeks ago so I have about 20 dinners frozen to feed us after the baby arrives. It is easier for me as this is my first but I am just using my good days well!

vmb

I had a mri one week ago, and again, it's dreadful. Since April I've got a new big lesion in the brain, and other lesions have grown.

Using the contrast, there are multiple active lesions. I've been living in a continuous relapse this year.

Apart of have my sensitivity broken and general weakness, pain is my biggest concern. It's out of control. I am on gabapentin and palexia, but they are just not working at all. I have an appointment with the Pain Unit team next week, but I don't know what to expect. I've met the pain consultant as private patient, but unfortunately the prescribed drugs didn't help

Are any of you trying other pain medicines apart of gabapentin/pregabalin? I'm going to give a try to CBD, the legal cannabinoid, but I'm not too confident because THC is also important for the pain management, and that is not legally available yet.

Tomorrow I am heading to London for the first appointment with the HSCT team. I really need that working, it's being a very rough year!

eimsRV

Loveinapril wrote: »

I have gone into organisational overdrive just in case the MS gets worse in the last few weeks or I relapse after the baby gets here. I had most things bought and organised by about 26 weeks. I started batch cooking a couple of weeks ago so I have about 20 dinners frozen to feed us after the baby arrives. It is easier for me as this is my first but I am just using my good days well!

When are you due loveinapril? You sound ultra organised!! I had thought to leaving getting everything until after Christmas, but I might start getting some of the basics in.

eimsRV

@VMB good luck in London.

Loveinapril

eimsRV wrote: »

When are you due loveinapril? You sound ultra organised!! I had thought to leaving getting everything until after Christmas, but I might start getting some of the basics in.

I am due in about 6 weeks. First baby so I am mad excited but also very aware of my health. Both of those things have me on top of my sh!t.

Carrie6OD

Loveinapril wrote: »

I am due in about 6 weeks. First baby so I am mad excited but also very aware of my health. Both of those things have me on top of my sh!t.

Thanks for advice. I will do my best for the good days and rest for bad. I am so tired I am fit for nothing in the evenings. I am seeing a good acupuncturist and he has helped with the MS side of things but this pregnancy is tough going.

1st baby is so exciting! All the very best with everything and take any support or help going when baby comes

byhookorbycrook

vmb wrote: »

I had a mri one week ago, and again, it's dreadful. Since April I've got a new big lesion in the brain, and other lesions have grown.

Using the contrast, there are multiple active lesions. I've been living in a continuous relapse this year.

Apart of have my sensitivity broken and general weakness, pain is my biggest concern. It's out of control. I am on gabapentin and palexia, but they are just not working at all. I have an appointment with the Pain Unit team next week, but I don't know what to expect. I've met the pain consultant as private patient, but unfortunately the prescribed drugs didn't help

Are any of you trying other pain medicines apart of gabapentin/pregabalin? I'm going to give a try to CBD, the legal cannabinoid, but I'm not too confident because THC is also important for the pain management, and that is not legally available yet.

Tomorrow I am heading to London for the first appointment with the HSCT team. I really need that working, it's being a very rough year!

Ah feck .
I'm in 2,700 mg of gabapentin , 50 mgs of amitriptyline , 10 mgs of baclofen and 40 mgs of vimovo per day , they blunt rather than kill the pain .

On the very small + side of new lesions , at least you might qualify for England .

vmb

byhookorbycrook wrote: »

Ah feck .
I'm in 2,700 mg of gabapentin , 50 mgs of amitriptyline , 10 mgs of baclofen and 40 mgs of vimovo per day , they blunt rather than kill the pain .

On the very small + side of new lesions , at least you might qualify for England .

I had another MRI with new lesions in April. That MRI was used for the transplant committee evaluation, I am already approved.

Today I've visited the transplant team in London, so I am one step closer. Hopefully I will have phase 1 next month and phase 2 in December / January.

They are very confident about the treatment effectivity. It works very well during the inflammatory (RRMS) phase

Lollipops23

vmb wrote: »

I had another MRI with new lesions in April. That MRI was used for the transplant committee evaluation, I am already approved.

Today I've visited the transplant team in London, so I am one step closer. Hopefully I will have phase 1 next month and phase 2 in December / January.

They are very confident about the treatment effectivity. It works very well during the inflammatory (RRMS) phase

Please forgive my ignorance, but when you say "qualify for england" do you mean the chemo treatment?

vmb

tl;dr: I've been approved for the whole HSCT treatment - chemo and bone marrow transplant.

This post explains the whole process and most people won't be interested so you can ignore it, but maybe it could be interesting to some of you

The approval process is tedious. First of all, most people just don't need this treatment if they are "under control" with a regular approved treatment.

After failing with Lemtrada or tysabry, and depending on your current condition, your neurologist couldoffer you a referral to a London neurologist specialised in HSCT.

Then, you have an appointment with him and discussing my case, some MRIs and also a EDSS assessment. If your MS is inflammatory and very aggressive ,but your disability is not too high (EDSS <= 6) your options are very good. A recent MRI showing new lesions/inflammatory activity is mandatory.

After that, there are bi-monthly committees called MDT where the neurologists/haematologists discuss case by case checking all the parameters. If you are approved, that means they are happy to offer you the treatment.

Once you have this approval, you need to apply to the HSE for funding. There is a protocol (HSE-112) so Ireland pays to the NHS directly. There are documentation to fill. After 3 weeks I was also approved.

So in this point, I have the medical appv. and the fundings. Yesterday visit was only because the haematologist wanted to verify that I understand the treatment and its risks:

Possible loss of fertility, though they offer you options for this. In women is more complicated, but there are still options.

Infections are almost guaranteed during the phase when neutrophils levels are too low, but the whole team is monitoring this.

Mortality, what is about 2%, but if you ignore the cancer segment of patients it improves to 1%. They told me that none of their MS patients has needed to be moved to the ICU so far.

In some days/weeks I will need to return back to London for general health tests. They need to verify that my body is strong enough for the treatment. Once everything is ok and I move through the waiting list I will have phase 1.

Waiting list is exasperating, but obviously cancer patients (myeloma and other seriously dangerous types) are prioritised.

Just writing this shows how long and extenuating the process is, and I haven't started the treatment yet!!! There is a woman for Galway who was the first Irish patient doing this and afaik she is doing very well. There is another currently finishing phase 1.

As final recommendation, if your neuro is happy with your current treatment response, it is better to not to worry about extremely powerful and dangerous treatments. I wish Lemtrada had worked, as well Tecfidera or Avonex, but my progression has marked my path.

A very rough path, only this year I've been admitted to hospital 5 times. I am lucky enough I have a great neurology team at Vincent's. They have been very supportive and helpful during these 2 hideous years.

Loveinapril

sugarman wrote: »

Now over the last 24hrs or so, I feel like Im being strangled. Again not choking or anything but it literally feels like someone has their hands wrapped around my throat and I can feel pressure building in my head/throat/face. Almost as if I were being properly choked, but can breathe fine. More like a blood rush in my head/face, like as if I was dandling upside down.

Should I be concerned? Not scheduled to see anyone until the new year again.

I am sorry you are feeling like this, i can imagine its so uncomfortable. Definitely get onto your neuro. It sounds like the MS hug. A friend of mine has similar symptoms.

byhookorbycrook

The " hug" I have is around my chest. I've not heard of it around the throat. Best to mention it to your neuro anyhow.

goulders

After a read mods are happy to post this survey, thank you Goulders for the link

info re the survey taken for ms ireland web site

http://www.ms-society.ie/research/blogs/2277

Lollipops23

Finally got some feedback on my MRI (conducted in Sept). No new lesion activity!! Meds seem to be holding firm, at least for now!

vmb

goulders wrote: »

After a read mods are happy to post this survey, thank you Goulders for the link

info re the survey taken for ms ireland web site

http://www.ms-society.ie/research/blogs/2277

\


During my last neurology appointment about 3 months ago, a nurse was involving MS patients in a DNA study, looking for biomarkers.

I was asked to join the trial and I had the blood test, even though I am not irish (part of the study looks for specific biomarkers in the irish population). I guess that they can have more information checking different genotypes/phenotypes.

By the way, If all goes well, I am starting my aHSCT (stem cell bone marrow transplant) in just a month.

I wish I knew that waiting list was so large, I'd have the treatment in a private facility and I'd save a lot of new lesions, relapses and money, as I've been out of work for six months.

It's been almost a year from the original referral to the, yet estimated, transplant date...

byhookorbycrook

As a silly aside, am I the onl one who thinks it's funny that MS Ireland raises funds through sponsored walks?

goulders

very quite here ?/

Has everyone been cured ???

Loveinapril

goulders wrote: »

very quite here ?/

Has everyone been cured ???

Haha!

I had a little baby 9 weeks ago and am heading into a relapse. My health had been so good so I am really disappointed. I have permanent weakness in my right leg/ foot but now am getting a lot of pins and needles and tingles in my left leg. In 7 years of having MS, I have never had any symptoms on my left side so I am not happy. I am breastfeeding so really don't want to go back on meds.

Lollipops23

Loveinapril wrote: »

Haha!

I had a little baby 9 weeks ago and am heading into a relapse. My health had been so good so I am really disappointed. I have permanent weakness in my right leg/ foot but now am getting a lot of pins and needles and tingles in my left leg. In 7 years of having MS, I have never had any symptoms on my left side so I am not happy. I am breastfeeding so really don't want to go back on meds.

Congratulations!!

I have given it thought and reckon I probably won't breastfeed when the time comes. Do you mind me asking if you came off meds before your pregnancy?

Loveinapril

Lollipops23 wrote: »

Congratulations!!

I have given it thought and reckon I probably won't breastfeed when the time comes. Do you mind me asking if you came off meds before your pregnancy?

Breastfeeding often delays relapses, apparently. I came off all meds before trying to concieve. The doctors wanted to discuss it first but I didn't feel like I needed their opinions so came off everything and told them the next time I was at the clinic. My MS has been very consistent the last few years, it didn't change at all on pregnancy so I have been very fortunate.

Lollipops23

Loveinapril wrote: »

Breastfeeding often delays relapses, apparently. I came off all meds before trying to concieve. The doctors wanted to discuss it first but I didn't feel like I needed their opinions so came off everything and told them the next time I was at the clinic. My MS has been very consistent the last few years, it didn't change at all on pregnancy so I have been very fortunate.

Thanks for the info- it's something that's been on my mind, as I will likely be trying in the next few years and there's not a huge amount of practical info out there about ttc when you have ms. I'm currently stable and have had no further development or relapses.

eimsRV

Congrats Loveinapril! Sorry to hear you are relapsing.
I'm scheduled for a section in 3 weeks. I came off my medication when I found out I was pregnant. Was in with nuerologist 2 weeks ago, she recommends I only breastfeed for max 12 weeks and then go back on meds. I'm going to start harvesting colostrum from this week as I'll be 36 weeks.

vmb

Hi.
I'm in London having stage 1 of the HSCT.
Yesterday I had the collection of the bone marrow stem cells, so this phase is almost finished. The transplant will be one month later. I didn't understand why is this separation between phase 1 and 2, but now I can see that my body needs to recover. It's been very hard, some complications, but I hope to recover soon.
I had lemtrada 16 months ago and I thought that the first phase of HSCT would be similar, but it is much harder! I really hope to have a huge reward and to stop my ****ty MS

byhookorbycrook

Vmb, the very best of luck to you, keep us posted.

Carrie6OD

Loveinapril wrote: »

Haha!

I had a little baby 9 weeks ago and am heading into a relapse. My health had been so good so I am really disappointed. I have permanent weakness in my right leg/ foot but now am getting a lot of pins and needles and tingles in my left leg. In 7 years of having MS, I have never had any symptoms on my left side so I am not happy. I am breastfeeding so really don't want to go back on meds.

Congratulations!

Sorry to hear you are having symptoms. MS is such a balls. I am 30 weeks now and so far MS has been very good to me. I have PPMS so was extremely nervous about this pregnancy but so far it has been fine. Have been warned to be very careful after the birth not to get too tired etc... how on Earth will I manage that one?! I’m not on meds as none available for me but hoping to try either siponimod or ocrelizumab when it becomes available. Had terrible reaction to rituximab so I’m praying that even though they are practically the same, the properties of ocrelizumab are slightly different to avoid that reaction again. Hope all on the forum are doing ok.

byhookorbycrook

Carrie, stay well, and hopefully ocre will be better for you.

Shoobs86

Hey everyone, I hope you don't mind me posting here! I'm new to boards completely

I was just looking for some "Real person" advice and experience. As much as I google, I'm only getting sparse HSE/NHS articles which are no help. I have been attending my GP for years now - since 2014 - with a recurring numbness/pins&needles in my right arm and leg. Over this years, it's developed into a sort of "bone pain" all over which comes and goes, but it's here most of the time now, and my right hand and leg are definitely weaker with some changes to my walk. In 2015 I went for an MRI and it came back clear - "we didn't find what we were looking for" was her description. The problem has not gone away though, and all my other bloods are clear. The point of my message is that I have an appointment booked with a Dr Gibbs in Galway Clinic on Thursday this week, and I really don't want it to be a wasted journey. Would you have any advice as to what kind of information to bring with me? I have my MRI results and my last bloods, and I have a short list of everything that I have been experiencing, but my concentration levels are quite low and I find I come away from appointments without discussing important parts sometimes. As I understand it, my symptoms are somewhere between MS/Fibro/ME. I'm hoping Dr Gibbs can give me some sort of clarity on Thursday - if I can pull my stuff together on the day

embee

Shoobs86 wrote: »

Hey everyone, I hope you don't mind me posting here! I'm new to boards completely

I was just looking for some "Real person" advice and experience. As much as I google, I'm only getting sparse HSE/NHS articles which are no help. I have been attending my GP for years now - since 2014 - with a recurring numbness/pins&needles in my right arm and leg. Over this years, it's developed into a sort of "bone pain" all over which comes and goes, but it's here most of the time now, and my right hand and leg are definitely weaker with some changes to my walk. In 2015 I went for an MRI and it came back clear - "we didn't find what we were looking for" was her description. The problem has not gone away though, and all my other bloods are clear. The point of my message is that I have an appointment booked with a Dr Gibbs in Galway Clinic on Thursday this week, and I really don't want it to be a wasted journey. Would you have any advice as to what kind of information to bring with me? I have my MRI results and my last bloods, and I have a short list of everything that I have been experiencing, but my concentration levels are quite low and I find I come away from appointments without discussing important parts sometimes. As I understand it, my symptoms are somewhere between MS/Fibro/ME. I'm hoping Dr Gibbs can give me some sort of clarity on Thursday - if I can pull my stuff together on the day

MRI, bloods and the result of a lumbar puncture if you have them. Good luck, I hope you get a definitive diagnosis x

Kazzam88

Hi All

I hope everyone is doing well and minding themselves

I was diagnosed with MS in Feb 2015 and started on Lemtrada in Feb 2017 meaning I am to get my bloods checked monthly. My neurologist asked that I get them done with my GP so to keep a record which is fine however it means paying 30e a month. I unfortunately haven't been able to return to full employment (so far, positive thinking!) since a relapse in 2016 but I have been volunteering and the 30e p/m does add up. Due to my husband's wage and our monthly outgoings, I don't qualify for a medical card. I guess I'm frustrated by it all...

Basically my question is - are there any members here on lemtrada that need to get their monthly bloods? And if so, how do they go about it or do you just suck it up and pay?

Thanks

vmb

Kazzam88 wrote: »

Hi All

I hope everyone is doing well and minding themselves

I was diagnosed with MS in Feb 2015 and started on Lemtrada in Feb 2017 meaning I am to get my bloods checked monthly. My neurologist asked that I get them done with my GP so to keep a record which is fine however it means paying 30e a month. I unfortunately haven't been able to return to full employment (so far, positive thinking!) since a relapse in 2016 but I have been volunteering and the 30e p/m does add up. Due to my husband's wage and our monthly outgoings, I don't qualify for a medical card. I guess I'm frustrated by it all...

Basically my question is - are there any members here on lemtrada that need to get their monthly bloods? And if so, how do they go about it or do you just suck it up and pay?

Thanks

I had lemtrada in sept 16.

My neuro gives me blood and urine forms, and I am having blood tests in hospital (St Vincents) every month. The ms lab nurse checks my levels every month and tells me if something is not ok.

Ask your ms nurse, they should be able to give you forms so you don't have to pay.

To be monitored is super important, the prevalence of some diseases after lemtrada higher than expected. ie, at the beginning they though that thyroid problems were present in about 30% of patients, and now is known that this number is moving towards 50%.

Furthermore, those problems could appear years after the last lemtrada drip.