My 6 day hospital experience - Diagnostic testing and treatment - Part 9B

[dadwithsonrp]

Thank you for sharing, I've M.S. diagnoced in April 2011, make a long story short it is difficult to learn to deal with. And the meds are strange with side affects, it is very difficult to try explaining to co-workers. Thank you again, Robert

[0302isis]

Hope you are doing well! Would love an update and would love an update from rvquilter83 and how her son is doing.

[bluebeara25]

thank you for doing this video you were diagnosed a year after me but i was in denial for 2 years so I just now am starting the process of dealing with the ms medically and mentally it has been very scary and watching your video made me feel less alone:) so thank you very much. Im 25 years old and was diagnosed when I was about 4 months pregnant it was a very stressful time I lost site in my left eye!! Scary!!! Well thank you so much for your time and chin up:)

[MSBunnyCuddles]

@bluebeara25 Hello and thanks for watching, lovely to meet you. Being diagnosed at any age is one hell of a blow, but you were diagnosed very young so denial can be a useful survival tactic - for a while... On the upside, you're probably aware that pp who are diagnosed young like yourself often have a better prognosis longer term... And I hope you're also aware that the chances of your child developing MS are not that great - don't quote me but I think its round 30% chance. Take care x

[blackunseelie]

Hhhmmmmm that went wrong, again, hello i would like to know if you expirienced any muscle trembling as à symptom?

[MSBunnyCuddles]

@blackunseelie Hi there, muscle trembling? no I haven't... That sounds like a very uncomfortable symptom, Im sorry if that's what you're currently experiencing. Every case is so unique from the next...

[blackunseelie]

Hello

[22bellas]

WEL DOES THIS WORK// WHAT R U ON NOW THANKS PRAYING FOR U

[MSBunnyCuddles]

@22bellas Hi again - the steroid treatment helped but it didn't make the relapse 'go away' - it just works to dampen down the inflammation in the brain and help speed up recovery, its certainly no miracle fix and it was still weeks until I felt better - I now take Tysabri and have not relapsed since March 2011.

[ceahorse56]

Is this your last video? Is another on the way?

[MSBunnyCuddles]

@ceahorse56 Hello! Yes, there's definitely more to come ;)

[cosgrove72]

Thank you for your videos. You've been thru so much and your very strong! I hope you're dealing with things better day to day :-) I wanted to ask, do you get muscle cramps that last extended amounts of time?

[MSBunnyCuddles]

@cosgrove72 Hi there! Thanks for watching, its great to know the vids are affecting people in a useful, postive kind of way...I am fortunate to not have experienced muscle cramps at this point...I get a lot of tingling and 'dead' arms in bed etc, so I toss and turn alot....

[cosgrove72]

@MSBunnyCuddles Thank you for your quick reply! Let's hope it stays that way for you!! Thank you again for your videos :-)

[Zedrie]

I don't have MS and honestly, just kinda stumbled onto your video's, but I've watched them all now and I just had to say you are an amazing person! Your story is so personal and so touching; God bless you hun, seriously, you are an inspiration :D Take care of yourself!

[MSBunnyCuddles]

@Zedrie Hi there, Im not that amazing, but thanks for saying so, was lovely to hear, I have coped about the same as anyone else would have and am still working through it all, it's a day by day thing and I dont expect to feel 'on top of it all' for some time yet. Thanks so much for your comment and support, means a great deal....

[wschraml18]

Thanks for posting your story. I've had "episodes" a few times so far with no diagnosis yet. Most recent bout started a week ago. I had my grandma's funeral and later that evening the vertigo started.... awful. Then the pins/needles in had and face, headaches, stumbling for words..etc. have appt with neuro next Wed. Pray this time I will get some answers. As scary as it is.... I just want to know what is wrong. It's not knowing that makes coping difficult.

[MSBunnyCuddles]

@wschraml18 Your story is very similar to mine - its amazing what stress can do to the body, stress has a really negative effect on the immune system, which is why it can trigger MS relapses, where the immune system turns on itself...I hope you are doing okay and that you get some good news....

[adr3naline23]

hello hello, your very beautiful person, u should smile more its mesmerizing, but um i was just diagnosed with ms or am about to because the neurologist just told me this past friday, to be honest ive never heard of ms before last week , and i did research based on the fact that my docter said i had bright spots on my mri, so before i went to the neuro i knew what i had, and when he told me i basically had ms, i turned into a complete mess, ive never cried more in my life, ty for your videos

[MSBunnyCuddles]

@adr3naline23 Thats so lovely of you to say...thank you - i hope youre doing okay :)

[kezzcass]

Great vids! Thanks for sharing your story. It's a journey and sounds like you are wading through it all. The experience of your diagnosis was so similar to mine - was a rather bad trip down memory lane - even down to having a student doctor perform the LP!! But that's ok, I've been relapse free for 20 months now and doing much better. Hope you have more better days ahead. Kerri x

[MSBunnyCuddles]

@kezzcass Hey Kerri - I dont think i responded to your comment -You know the more time that goes by the less detail I remember, you never forget it of course but watching back triggers detail I had 'put away' somewhere in the back of my mind. Im really hoping next year will b a year of getting 'things' together & finding a place where I can sit peacefully with all this chaos & uncertainty. So glad to hear youre doing so well, and no medication? I would love to hear any tips you have for me x

[kezzcass]

@MSBunnyCuddles Tips? Well we all find our best way through I think, listen to others and decided for ourselves. I did have CCSVI treatment which made a big difference for me. But I don't push this on others, the trial for it should be starting in Melbourne very soon at the Alfred Hospital so it is an option for you if you are interested. Other than that I eat well, keep moving and do my best to keep my stress levels low. I hope 2012 is a good year for you.

[MSBunnyCuddles]

@kezzcass - Hey! Ive looked into the CCSVI thing - I did the U/S study @the Austin back in June '11. My main symptoms are tingling, dead arms, fatigue, skipping letters in my handwriting - my handwriting sux too...I just wonder if I would have to be worse to benefit from the procedure...Im onto the Alfred's new trial and will be speaking to my Neuro at my next appointment mid December -Hope im not leaving it too late - its been at the ethics committee forever! Have a great Christmas Kerry :-)

[kezzcass]

@MSBunnyCuddles Excellent! :) So pleased you put your name down for the trial, I trust the vascular doctors there. I don't think you would need to be worse to benefit - I'd say the dead arms thing is a fairly strong indicator that it is worth looking into. I assume the Austin trial said you didn't have CCSVI but did they find any abnormality at all? We are not very confident in their results. You have a great Christmas too!

[mu2freighter]

Great vids! I see lots of similarities with my own saga, from the suspected pinched nerve to all the nasty tests. I was DXed incorrectly with RRMS in 2006, I actually have PPMS, if it's any consolation it's loads worse than what you might be looking at ;)

I run a fundraising blog but talk a lot about living with MS, and I'd love to have you visit. Ignore the donate buttons and please leave comments, talking with others is vital. Google "Get Glenn Mobile!' , please stop by and thanks

Glenn!

[MSBunnyCuddles]

@mu2freighter Im sorry to hear of the path your MS has led you... thank you for your comment and support.

[mu2freighter]

@MSBunnyCuddles

You haven't updated in some time, hope all's well!

I do hope you'll drop by getglennmobile and have a look around, I'd love to see another MSer participate if you have any comments or suggestions...a fresh perspective from someone who's also dealing with the MonSter will be welcome!

[sleekcartim]

your lucky to not remember what all you have gone through. My 1st spinal tap was botched... my neuro didnt numb me up enough, & went too fast in with the needle. I had to make her stop (pain & freaky feeling was too much). the 2nd attempt was by an inexperienced doc who took over an hour with a needle in my back (whew). they tell me i should be getting another one in near future. i honestly dont think i can :(

[MSBunnyCuddles]

@sleekcartim Oh boy thats terrible, I would be feeling very nervous about the prospect of going down that road again...I guess its another reason why I wanted to record my experiences in this way, because as time goes by the precise detail fades but the feelings and emotions dont, thats for sure...I now have my treatment at the hospital I spent my 6 days of testing at, and each time Im there I relive the emotions in one way or another. Very sad...

[sleekcartim]

stay strong, we are watching & sending positive thoughts. you are not alone. I know It's so difficult to deal with all this with depression as a symptom on top of it. It's a cruel disease that way.

dont stop doing vids, im betting it makes you feel better.

[MSBunnyCuddles]

@sleekcartim Hi there, Im sorry for the late reply, you are right, making the videos helps a lot, not just for me but knowing its helping others too, I remember how glued I was to you tube during the time of waiting to find out if it really was MS, I really needed all the personal stories and experiences i could get my hands on, its not enough to read text from an article or book...

[rickileeway]

-2- Very irresponsable of me I know, but it was when I was 1st given the official diagnosis so I was a little scared & in denial.

I really hope your health improves. Take care Caroline.

PS. Unfortunately I have to smoke cos it helps me manage back pain. I hate it though :)

[rickileeway]

Hi MsBunnyCuddles...great name. This is all so familiar to me & I assume to many others. I became a little hyper after the prednisolone drip too. I 'escaped' from hospital & went & stayed with a good friend & her hubby who lived around the corner so I didn't have to sleep at the hosp....lol. Just showed up for the treatment & tests. Hate hospitals so much. But I was so 'off the planet' I neglected to even inform the staff so they thought I'd been abducted by aliens...hehe!

[metalbornmetalbred]

If he only knew how tough it is to quit, lol. Again I just want to say thank you, because your decision to share your experience, is very helpful. Not just to me, but to many in the same boat. However mine turns out, just know that you are truly helping others.

-Jay

[MSBunnyCuddles]

@metalbornmetalbred - Im coming up to my 6 months smoke free on October 3rd - still cant believe it. I can easily stand around and hang out with smokers, and you do adapt - trust me on this!  I cut down to about 6 per day, then went cold turkey, no smoking aids, think smoking aids just drag the whole damned quitting thing out longer than need be... you have the greatest motivation you could have right now to stop, give it a go ;) Write soon x

[metalbornmetalbred]

Hi Caroline (hope that I spelled that right:) Received some test results yesterday. A lot has been ruled out except MS, but they found a lot of inflammation. My memory is shot, and I do not remember everything they told me, but they concerned about that inflammation. I wanted to ask about the spinal tap. How painful was that? Did they numb your back at all? That, along w/ a full spinal MRI is comig up soon. Congrats on quitting smoking as well. My Dr. gave me the stop smoking speech last week.

[MSBunnyCuddles]

@metalbornmetalbred - Im glad u r slowly getting 2 the bottom of this, I think its probably better 2 know than not know - if your fears r realised, at least u can start treatment sooner rather than later. I should have mentioned they certainly did numb my back, if their technique is good u may not feel it the way I did...It is so hard to remember what the neuro tells u, I 100% vagued out after he showed me the lesions on my MRI...giving up the smokes will b the best thing u eva did 4 yourself!

[MSBunnyCuddles]

@metalbornmetalbred Me again - be prepared for a long MRI, it may take around 1.5 hours if it is brain and spinal - I just had one ;(

[metalbornmetalbred]

@MSBunnyCuddles FINALLY!!! I finally received my diagnosis on Monday. I do have MS. I am happy to finally know for sure, and to finally have started treatment, but otherwise I am sad, and discouraged. No depression...yet, but I dunno what else to say about the emotions. I just finished w/ 3 days of solumedrol steroid iv therapy this morning. The steroids have given me a flu type of thing on top of the MS. The Dr. said that my left brain has a smal debris field on it.See the Neuro again tomorrow

[MSBunnyCuddles]

@metalbornmetalbred Im so sorry for the late reply - been a tough couple of weeks...

This is big news...Im sorry...Do you know how often I hear people expressing relief at finally getting a legit explanation for all the crazy goings-on in our bodys? I was diagnosed about 5 weeks after my big attack so relief isnt something I can relate to - but shock and grief, yes. Please write me and let me know how youre doing...Caz

[heythereitsmindy]

Great video! It is awesome to see you back here. Stay positive my friend!

Peace & Love,

Mindy

[MSBunnyCuddles]

@heythereitsmindy - Thank you Mindy, Im trying my best-est :-)

[MrMarkafisher]

We become untrained experts, all from personal experience.

Good informative video, MS does have some similarities after-all, mainly diagnostic. 

[MrMarkafisher]

We become untrained experts, all from personal experience.

Good informative video, MS does have some similarities after-all, mainly diagnostic.

[MSBunnyCuddles]

@MrMarkafisher Thanks Mark, we've all been there, havent we?

[rvquilter83]

I am so happy to see you are back. You are such an inspiration to me. My son is going through anger and he won't even go back for follow up with his doctor because he has no insurance. He can get the help but I don't know if he is doing that. When I told him I would love to hear more from him, he sternly told me he was not going to call me every week. I was quite hurt. I love my son and just want to know he is okay and that I am here for him. Thank you for your videos, you help me understand. =)

[MSBunnyCuddles]

@rvquilter83 Hi! I am glad 2 have made another vid - just not happy with the weight gain, but itll come off...It would seem so much easier 2 pull the covers over & pretend its not happening, this may b what your son is 'trying' 2 do, its a defense mechanism, self preservation, he will come out & face things sooner or later, but it sounds as tho he has an internal battle going on. He has every right t b angry - I still am & probably will b for some time 2 come. I hope he reaches out 2 u soon x

[MSBunnyCuddles]

I guess its also possible that your son has followed things up, but is doing it quietly so he can deal with things at his own pace & not be forced 2 publically acknowledge the truth; therefore he's getting angry when you try 2 talk about it with him...I think time will improve the situation, he has alot of adjusting & acceptance 2 work through himself b4 he lets others in - I purposely dont take my mum with me 2 appointments, I go alone - it feels too real & dont want 2 see mum upset anymore...