RRMS dx received

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RRMS dx received

Postby MrsGeorge » Thu Apr 17, 2008 8:46 am

I finally (after more messing around than I can be bothered to type) got an MS dx today. Am feeling remarkably cheerful despite this because I finally have some answers.

Because the doctor I was supposed to see was out I need to back another time to discuss any meds so at today I just got the dx and had a few q's answered.
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Postby jimmylegs » Thu Apr 17, 2008 9:08 am

hey mrs george! it is great to have answers. now you know which ass to kick ;)
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Postby MrsGeorge » Thu Apr 17, 2008 11:18 am

Thanks Jimmylegs - having a few more aswers is great - i have a way to go yet though!

I forgot to say that they showed me slides from the scan and it showed 4 very small lesions.

I am most pleased that they said I was fine to continue trying to get pregnant - a project I've been working on for some time! I would have been heartbroken if they had said not to!
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Postby jimmylegs » Thu Apr 17, 2008 12:27 pm

good luck with your project!! ;)
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Postby AllyB » Thu Apr 17, 2008 1:33 pm

Hey Mrs.G

I am glad that you finally have confirmation of what you knew in your gut to be true - at least you know for sure what you are dealing with and can getthe correct care.
But it still sucks, and you may have some shaky moments. You are entitled to your feelings - this is not the best news in the world, and if you need to chat, there are stacks of folks here (as I am sure you have seen) who will be more than happy to lend some support and answer any questions if they can.

I wish you much joy with your current project - I have two young (ish) boys, both of whom were born after my ms diagnosis - I had a bit of difficulty falling pregnant (nothing to do with ms, and easily resolved), but the pregnancies were a breeze - I loved it! It may delay any treatment that they might have wanted you to start (such as interferon), but if you want kids, I think it is better to have them sooner rather than later, and women with ms generally do well, ms-wise, while pregnant (I read that somewhere).

Anyway - good luck.
Al
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Infertility Treatment and MS

Postby Shayk » Thu Apr 17, 2008 7:05 pm

Mrs. George

By all means enjoy the project! Depending on how it goes and where it leads I thought you might want to be aware of an abstract from the AAN meeting on infertility treatment and MS.

Effect of Infertility Treatment on MS: Report of 4 Cases
OBJECTIVE: To report the case histories of 4 patients who experienced either onset or marked exacerbation of multiple sclerosis (MS) following infertility therapy.

CONCLUSIONS/RELEVANCE: Our observations provide evidence for a possible role of sex hormone therapy in instigating a first inflammatory demyelinating episode suggestive of MS or in exacerbation of existing MS.

The hormone therapy used was Leuprolide, about which I know nothing, and the idea advanced in the abstract is that it may activate T-cells and potentially decreases estradiol (estrogen)--a protective hormone in MS. For those of you who know my about my interest in hormones, those were their words, not mine. :wink:

I agree Ally, I think there is research suggesting many women do better during pregnancy, especially the last trimester. I think it’s one of the reasons they decided to explore estriol as a treatment for women with MS.

Hope everything goes well for you Mrs. George.

Sharon
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Postby ssmme » Thu Apr 17, 2008 7:21 pm

Just so you know...my MS dx did not happen till after many fertility injections prior to invitro fertilization treatment followed by one finally successful pregnancy. I still wonder if the treatment spurred the ms to come on with a vengeance even though it was there lurking in the background prior to the fertility treatments...hmm...

No matter what I don't regret my decision for fertility treatments or for trying to get pregnant and am thankful everyday for the beautiful children that were created. If I knew of ms in advance I would have still made the same choice. MS doesn't run my life now. I run my life but I am aware of the fact that ms can affect my situation and I must be aware of it's presence.

I wish you the best of luck in your endevour.

Marcia

Good luck to you!
Marcia
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Postby MrsGeorge » Fri Apr 18, 2008 1:12 am

thanks very much. My husband & I have been trying for 2.5 years already so the thought of giving up is unbearable. I don't know what the future holds but I am in the process of losing weight in the hope that it means I can avoid fertility treatment! I'm hoping it will help with MS too. I have lost 30lbs already but have a way to go yet!

The neuro confirmed to me that pregnancy seems to protect women against relapses for the duration but did point out that the following 15 months hold a higher risk of relapse. It seems sensible to me then to start beta interferons immediately after giving birth.

I am trying to focus on what I can do rather than what it might stop me from doing. Unfortunately the doc I saw yesterday refused to give any kind of prognosis for the future because MS is so unpredictable.
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Postby Grumpster » Fri Apr 18, 2008 10:17 am

You may want to try a product called Instead, a menstrual cup as a conception aid. They are over the counter and usually used as a alternative to tampons or pads. The ejaculate is placed into the resevior of the menstrual cup and then the cup is inserted as usual. It holds the sperm against the cervix and has been shown to be pretty effective as a conception aid. It is an off label use, but safe as other indications for use (menstration). I believe they are sold in the UK over the counter as well. Go to www.softcup.com to learn more. Best of luck!!
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Postby AllyB » Fri Apr 18, 2008 1:55 pm

Hi there

That possible link between infertility treatment and ms is very interesting, and a possible reason for women with ms to avoid it? I guess you have to review the pros and cons and then make an informed decision.

I had intra-abdominal scarring (adhesions) from a ruptured apendix when I was in my early twenties - I didn't know I had it and when I tried to get pregnant in my early thirties, I battled for well over a year.

My Gynae did a laparoscopy, spotted the problem and freed all the adhesions and "blew" some dye down my fallopian tubes to make sure they were open.
I then did daily blood tests (leutenising hormone increases markedly about 12 - 24 hrs before ovulation) from about day 10 of my cycle, with ultrasound scans from day 12, to pin-point exactly when ovulation would occur and within 4 months I was pregnant - after 18 months of trying...

My second was a very happy accident - I didn't think I could fall pregnant easily, so was careless - I now have two sons less than two years apart, when I probably would only have had one child. With ms, I kind of thought that I could only handle one kid, but I was wrong...

I also would not change anything - I am so blessed with these two little ones, and it is really worth the effort it took! My ms did not flare up either during or after my pregnancies - it was really mild until my youngest was about 3 yrs old, so I can't link it's worsening to my pregnancies at all.

Mrs.G - have you had any blood tests, lap-scopes etc done, or hubby's sperm count checked (sorry, I am assuming you are in a 'traditional' relationship here, and I probably shouldn't, don't mean to offend)? I know the NHS is notoriously bad with fertility treatment, but two and a half years is quite a while.

Best of luck.
Al
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Postby Punchy » Fri Apr 18, 2008 2:16 pm

MrsGeorge, while I am sorry that you have become an "official" member of our little club, I am glad that you have some answers at last.

I am in the same boat as you as far as babies go. We will start trying in a couple of months, as soon as the interferons are out of my system.

My neuro is 100% pro-pregnancy even though I too have some pounds to shed. I haven't heard about 15 months of relapse risk post delivery - everything I'vre read says 40% increase in chance for 3 months post partum. For this reason, my husband will be taking 3 months paternity leave immediately after.

It's tough finding information about MS and pregnancy, so I hope that we can share our experiences and information as we come upon it. :)
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Postby MrsGeorge » Fri Apr 18, 2008 11:42 pm

We're going to have to start a getting pregnant thread here so we can talk about it when it happens for us!

Grumpster - thanks for the advice - I was putting an instead to good use last night! We discovered them a while back but I rarely use them. In fact, some of the things we have discovered / tried in our quest for a baby would make your mind boggle!

Ally - I had b/w an ultrasound & a HSG done lst year (evil blow dye through - ow ow ow). They came back ok but I beleive that I haven't been ovulating regularly due to my weight (i was about 100lbs overweight). I had 2 miscarriages in 2006. My husband had a questionable SA and is waiting a referral to a urologist to try & fix an issue that he has that might be affecting stuff. Other than that I just have to keep losing weight and trying!

Punchy - I hope trying to conceive goes smoothly for you!

( i love how this thread isn't all doom & gloom but focusing on what can be done )
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Postby AllyB » Sat Apr 19, 2008 12:46 pm

Hey there Mrs. G

This thread has turned out really cool, you are so right - "yeah, so you have ms, but let's get on with the important stuff in life...!"
And right again, it has turned into a pregnancy thread - but it is really lovely that after offering support, most folks have latched onto the life-affirming issue that you have mentioned - something many of us have struggled with. Women generally feel a certain solidarity on this issue - if we haven't gone through it ourselves, we know someone who has and we really want to help.

I am so terribly sorry about your miscarriages - it is so heartbreaking. I can relate to the ouch of getting your tubes blown with dye under x-ray - I was lucky in that mine was done under GA, but I have a couple of friends who went through it with me holding their hands - the things women have to suffer through.

I am sure you know more about fertility than you ever wanted to, but I believe that it is possible to get at least one shot at IVF on the NHS - and you could use ICCSI as well to deal with you husband's possible issue - they start with nose spray to induce temporary menopause so that tyey can take over your menstrual cycle, then you progress to daily hormone shots, ultrasound scans to monitor the development of eggs, egg retrieval, then instead of just 'in-vitro' fertilization, they take one viable sperm (used for blokes with poor sperm count, or a high number of abnormal sperm) and inject it into the egg, so ensuring fertilization. After about three or four days, they impant the embryo back into you. I was looking at fertility treatment myself when I found myself pregnant (astonishing!), and being an RN, I have done the daily shots for 3 of my friends, two of whom had successful pregnancies following IVF and ICCSI.

While being overweight can definitely contribute to fertility issues, I know plenty of folks who are a bit on the heavy side who have had children. It seems a bit of a mystery, sometimes they can't even pinpoint an exact cause, so it is hard to correct it. But it is still a positive thing in terms of your general health and ms to lose a little weight if you think it is necessary (I could lose a little myself!). I really wish you much success with this - if you want to chat, please feel free to pm me. My only 'pearl of wisdom' is to keep chasing the dream and to fight through the medical establishment until you get treatment you are happy with (for fertility and ms), and to keep trying for a baby for as long as you feel able to. The chances are good that it will work out fine (there is excellent treatment available for most problems), but it takes a lot of emotional strength, even from your partner, so hang in there, you have a goal and are well on the way to achieving it!
All the best - with ms and your 'project'.

Punchy - all the best to you too!
Al
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