Relapse

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Relapse

Postby MrsGeorge » Wed Aug 19, 2009 6:22 am

Hi

Sorry I haven't been around much for a while. It has been one of those years and I have been trying to live ignoring the fact that I have MS. Unfortunately I have had another relapse which is having a pretty big impact on my life. Both my legs are weak and I trouble picking them up to walk, my arms are weak and my hands shake, my balance is off. Fatigue pretty bad too. Unfortunately I can't afford to take sick time because I was off all of July for something else. COs walking is so hard for me, even with crutches I have decided to bite the bullet and come to work in a wheelchair. A big thing for me. Now my manager seems cross with me because he has to do risk assesments etc and he doesn't have time so I have been told to work from home tomorrow. It made me feel really guilty for being a pain and because I have had so much time off already. It also hurt a bit because it's not something I want to do but need to if I am going to function.
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Postby catfreak » Wed Aug 19, 2009 8:26 am

Hi Mrs George,

I am so sorry you have had a tough year. Relapes are just a big pain in our MS life.

It is so good hearing from you. I was thinking about you just the other day and remembering your wonderful pictures you posted and your sweet disposition.

Please share with us so we can be of support to you.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby AllyB » Wed Aug 19, 2009 11:12 am

Hey Mrs G

I haven't been here for a while myself - but I am so, so sorry to hear that you have not been so well. You are always so kind, it is disheartening that your boss is being selfish, when really the extra little bit he/she has to do is nothing compared to the struggle you have to go through - I know we shouldn't judge others, but you deserve support in the workplace. Take care of yourself please - try to, anyway :-)
Big hug.
xxx
Al
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Postby Wonderfulworld » Wed Aug 19, 2009 1:12 pm

Hi there Mrs G
I'd decided to email you by this weekend if I hadn't heard from you! Glad to here you are still around, but sorry to hear that your relapse has hit you.

I know what you mean about trying to live as if you don't have MS....adjusting is so difficult sometimes....I think it took me 11 years and I'm not even 100% accepting at all. Maybe about 25% :lol: .

Don't worry about what your boss thinks- he will just have to adjust to the situation. Right now, this probably feels like a crisis situation but it will pass, and you sound like such a hard-worker and a dedicated person, I'm sure you give your all the rest of the time.

Have you got good support in terms of talking to others about this (apart from us that is!), maybe some help with work in the home, or shopping/cooking etc? It can all really help when you're recovering from a relapse.
Hope you're feeling much stronger soon.
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby jimmylegs » Wed Aug 19, 2009 3:29 pm

hi again mrsg, welcome back, sorry it's in unpleasant circumstances. have you been following developments here at all? the last year has been pretty eventful at TIMS...
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Postby Bubba » Wed Aug 19, 2009 7:53 pm

In my opinion.....

You should NOT feel guilty for one second. MS wasnt something you asked for. Also, if the boss has to do extra things because of your MS, thats what he gets paid for.
I just re-read my statement above, and it sounds sarcastic, but I dont mean it that way, not at all. Please dont take it that way. I am sure your boss would not trade positions with you if given the choice...
Sorry to hear about your relapse. I hope it will not last long nor be severe...
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Postby MrsGeorge » Thu Aug 20, 2009 11:45 am

Thanks guys. It really means a lot to hear from you. I'm sorry but I have been kind of keeping to myself because I haven't known what to say and I didn't want to just be whining all the time.

My manager is really great mostly. I think part of it is that I took all of July off work because I was in a psychiatric clinic and I'm still not back full-time yet. After my 4th miscarriage in Feb life went downhill. I was really depressed (hence hiding from the world) and had some major probs going on. I even skipped all of my MS appts because I couldn't cope. Things are much better now. I am feeling better but I have a long way to go.

Jimmy - I haven't been keeping up with things but if there's any interesting news I would appreciate being pointed in it's direction.

Bubba - didn't sound sarcastic at all hun!

As for cooking and housework, Adam is being great. He has really been looking after me, for months now. I don't deserve him after some of the crap I put him through over the last 6 months.

Thanks again guys.
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Postby jimmylegs » Thu Aug 20, 2009 12:12 pm

well mrs, from my personal angle the news to you is much the same as you would expect..!
there are some serious things to take a look at when you have ms and also miscarriage.. in the nutritional bloodwork department..

the general news is, to check out the new CCSVI topic.
there have been recent research findings in which high numbers of patients are found to have blockages in the neck veins, meaning blood gets stalled while still in the brain.
there has been a rush amongst our members to have their status tested, and have stents placed if warranted.
IMHO, it's too early to say whether the stenoses in these veins occur for identical reasons in all ms patients, whether they are caused by ms and facitilate its progression, or if they cause ms - and if so, are they birth defects that crop up a few decades into life? or do they develop and if so, how? how are they different or similar from venous stenoses in other parts of the body? so there are a lot of questions.
i don't follow it to the enth degree but i don't imagine anyone from this forum who has gone to stanford (the US mecca for this treatment so far), has come away without stents in one or more veins.
there are definitely some good outcomes reported, but overall i get the impression of mixed results from having stents placed. there are also risks/problems with the blood thinning medication that is needed after stent placement.
just from an overall impression, nothing systematic, i feel like the variability of results are probably a matter of how the individual ended up with their ms in the first place (mystery), and also how long they have had it prior to the procedure.
the participants in the original work in italy (a year, maybe two back) are starting to show up and relay their experiences and improvement here at TIMS.
also there is now an upswell of CCSVI pages on facebook. the english one is 'CCSVI in Multiple Sclerosis'.
there's a lot of reading to do to get caught up on that whole subject, but that's the overview!
again, welcome back,
JL
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Postby catfreak » Thu Aug 20, 2009 1:00 pm

Mrs George,

You can whine here anytime you want. We care enough to listen.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby Lyon » Thu Aug 20, 2009 3:41 pm

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Last edited by Lyon on Sat Nov 26, 2011 9:38 am, edited 1 time in total.
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Postby jimmylegs » Thu Aug 20, 2009 5:46 pm

a common thread...

...Prolactin (PRL), ferritin, vitamin D, and the tumor marker tissue polypeptide antigen (TPA) were measured in autoimmune diseases: systemic lupus erythematosus (SLE),
systemic sclerosis (SSc),
rheumatoid arthritis (RA),
polymyositis (PM),
dermatomyositis (DM),
multiple sclerosis (MS),
autoimmune thyroid diseases, and
antiphospholipid syndrome.

...The patients had relatively low levels of 25 OH Vitamin D: the average results (mean ± SD) were between 9.3 ± 4.4 to 13.7 ± 7.1 ng/mL in the different diseases, while the 25 OH Vitamin D concentrations less than 20 ng/mL are regarded as deficient.
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