Відео

Did you get diagnosed?

@@hellomynameis5520 nothing and still feel damaged over a year i feel messed up

Did you get diagnosed with MS?

@@hellomynameis5520 no. Disautonomia from trauma. Very similar. It attacks the autonomic nervous system. Sad finding out it is because of those things I thought I buried.

@@AubernsRevolution sorry to hear. What are your current symptoms?

@@hellomynameis5520 there are many. Starting with migraines, fibromialgia chronic fatigue, chonic all over pain, lighheadedness, Dizziness, balance, hand tremors, visual disturbances, hypervigilence, muscle tightness pain, bladdee incontinence, stomach pain, difficulty slowing, irratic BP/pulse. Up and down. All systems are triggered with this disease. Subconscious emotional flashbacks. Your not aware of it. Difficult sleeping. Heart palpitations. Sternum pain. Light sensitivity. Memory losses, difficulty remembering words, names. It was a rheumatologist who led me to the answer. I was going for the "fibromialgia" He asked me 1 question. How happy was your childhood. It's been two years. I'm been working on healing. Grieving my trauma that I never did... etc. CPTSD is not easy to erase. Nor is the autonomic nervous system.

Thank you so much for your support! <3

Thank you so much for your kind words! HSCT really gave me a second chance! I am really keeping my fingers and toes crossed that all goes well with your brave brother's transplant <3 wishing you all the best!

Thank you for your comment! I had HSCT in Moscow, Russia. I had Lemtrada only because I couldn't get HSCT sooner, so definitely go for HSCT rather than Lemtrada if you can!

You may contact me via Facebook facebook.com/anna.likos.96 if you'd like to! I am doing really well, feeling MS-free now 22 months post my HSCT :)

It really warms my heart to read your words of kind support from someone who understands and knows just about how I am feeling! Thank you <3 How has your recovery been so far if you don't mind sharing?

@@AnnavsMS I have a bit of GVHD which is causing nausea and vomiting. But it's not constant and fairly well controlled with Zolfran. I'd love more energy but I'm sure that will come in time. The isolation has been difficult. I'd love to just pop out to the mall and do all my Christmas shopping, watch kids with Santa, and be part of society again. It's funny because typically I HATE the mall! Too many humans. Now I want to go to all the gathering spots in town. :-)

@@stumpymcfee5695 I am sorry to hear you have had hard time dealing with GVHD but luckily with time and the right medication the condition is managed and will disappear eventually! Isolation is definitely frustrating time but it is so worth to be rather safe than sorry for some time post transplant. But after some time the isolation becomes too restricting and us humans are not naturally meant for staying isolated from the society for long periods of time without going crazy. I am still avoiding crowds though because I don't want to catch anything that would flare my ms... I hope you find ways to enjoy the Christmas and find the holiday spirit eg. with friends and family :) At least it is guaranteed that you got yourself the best present for Christmas, a new chance to happy healthy life!

Thank you very much! Mr Rommell congratulations for having Hsct successfully and not being far from the 1-year mark things will really start to settle in terms of the recovery! My old symptoms, mostly sensory symptoms, don’t concern me too much even though they keep being present more or less even now 18 months after...As long as the MRI stays clear and the old symptoms don’t turn into new ones and turn out to be a relapse, there should be no reason to worry. Chemotherapy alone causes tissue damage to various areas of the body which again can bring some strange sensations/symptoms that can easily be confused with ms symptoms. The time of recovery post Hsct transplant is quite an overwhelming time since the neurological recovery physiologically occurs sometimes bringing up sensations mimicking those of previous sensory relapse of. At 8 months and from that period forward the best you can do for your recovery is to focus on the good possible improvements by trying to ignore any possible reappearing symptoms. Living with MS is nothing but uncertainty about the future, but after Hsct the risk of relapsing has been lowered significantly giving the body the resources and time to heal some of the old damage. It has been and it still is hard to not think about the possibility of relapsing or the present symptoms thought to be old actually to turn out inflammation on a MRI or simply a clinical relapse. Personally, since most of my symptoms have always been mostly sensory it has been very mentally tiring to find reassurance about the actual cause of those symptoms that keep occurring randomly. But over time I have had to stop over analyzing every single sensation and focus on more relevant and positive things that support my recovery and health in general. May I ask if you are currently experiencing worsening of symptoms and what type during your recovery?

Thank you so much for sharing your experience with the very annoying hypersensitivity and for the lovely feedback! I am sorry to hear that you too have had hard time coping with such symptoms likely caused by hyperactive nerve responses and inflammation :( Are you perhaps having Hsct in the future to treat ms?

Thank you so much! I had HSCT successfully and now life is as good as it can get with MS. May I ask if you already had HSCT or are you still waiting treatment?

No I have not can I talk PM you about more info about HSCT?

My email address is annatipulipusu98@gmail.com

Thank you so much Tim for the tip! I have been following the MS Gym on FB for some time I find it very helpful. My problem is the laziness, if I would actually complete the exercises I am sure I will get the relief :)

Thats a problem with a lot of people, but once you get going it gets easier. Look me up and say hello, I'm active in the Facebook group and membership it would be nice to meet you and I can introduce you to a lot of people who deal with similar situations.

Thanks again for the support! I will definitely need look into that :)

It's called English language..

@@kalij2470 I cant understand her either

Auburn Tigazs your grammar is also quite problematic, so strange that you choose to criticise somebody’s english. in particular somebody sick, that needs support not pointless comments. you have the choice of not watching. i can understand her perfectly, her style is better than the style of many native english speakers, despite the accent

Thank you James for your comment and for taking the time to watch my video :)! It is great to hear that you are having a sct. I wish you all the best and a successful treatment! The neurological 'treatment' you've had sounds awfully familiar, I am really sorry you have had to go through such negligence...Spot on! They are not open to any kind of alternative discussion, patient's treatment isn't taken seriously. Thankfully you were able to find a hematologist and now a chance to halt the disease. I are really strong to have gone all this unnecessary resistance, but you never gave up and you fought for yourself and that is your greatest asset :) It makes me very happy and gives me strength to know that I have such lovely and kind-hearted viewers. I really appreciate your words. I am keeping my toes and fingers crossed for you as you will be having a life-changing! I was 26 too when I had my transplant and the odds are definitely against us since we are young and brave!

Thank you! I am excited to follow you and your journey and wish you all the absolute best going forward :)

I really appreciate your words! Thank you for being a part of this and giving yourself a second chance to life!

James Taylor It would be great if you made similar videos about your treatment. The more resources people have, the better.

Thank you very much for your lovely comment! I am pleased that you found the video helpful! :)

I am so happy for you! :) You definitely made the best decision! I made a vlog earlier to update the packing list ua-cam.com/video/rNAqq1_DZVc/v-deo.html Just pack less clothes, more energy-dense food (especially if you are a picky eater like me), mints to help coping with possible chemo taste and maybe some exercise equipment like a rubber band and a good moisturizer for the skin !

I made a long list from your video. My husband asked, what's all these purchases on Amazon?!

I am happy that you found my videos useful! Well, the respirator mask was the only thing I had to get from Amazon or Ebay. For example I bought this mask on Amazon www.amazon.com/3M-8233-Series-Respirator/dp/B000BU7CP0. But I have seen people have all kinds of masks and in the end it's a personal choice how careful you want to be. Most of the things I could find at home or at local stores... But please don't hesitate to ask, if something was unclear or anything else crosses your mind :)

Yep! Time keeps flying...I thank you ivonna for following my HSCT journey :)

Thanks ivonna! Hospital food is always more or less a struggle but great that part was funny...Thus I was able to bring the message through :D

Thank you Kane! I really appreciate it :) Stay tuned...soon I will post a new video!

Hi! I am glad you are soon having your transplant :) Personally I feel it's too early to talk about any improvement. During hsct I felt great but now that I am almost 2 months post transplant I feel that I am doing worse but I assume it's part of the recovery journey...Currently I feel how my old symptoms are flaring but staying optimistic that they will disappear over time...It's definitely a bonus if some of the old symptoms improve :)

Heippa! Olen optimistinen tulevaisuuden suhteen näin kantasolusiirron kokeneena ja tuntuu, että taudin eteneminen on todella pysähtynyt. Toki vanhat vauriot ja niiden mahdollinen korjaantuminen on kysymysmerkki, mutta kantasolusiirtohan ei siihen varsinaisesti ainakaan suoraan vaikuta! Ajan kanssa voi tosin vasta todeta, kuinka hyvin hoito on omalla kohdalla toiminut. Hienoa, että olet jaksanut olla aktiivinen oman terveytesi ylläpitämisessä, toisin kuin useimmat neurologit varsinkin julkisella puolella :) Oikeanlainen ravinto on avainasemassa erityisesti vanhojen vaurioiden korjaantumisessa. Ehdottomasti suosittelen kantasolusiirtoa, sillä se voi olla hyvinkin tehokas myös etenevissä tautimuodoissa. Hoidon hinta vaihtelee 50 000 amerikan dollarista satoihin tuhansiin. Tärkeintä etenkin nopeasti etenevän sairauden alkuvaiheessa saada tulehdus pysähtymään, jotta elimistön on mahdollisimman helppo korjata vaurioita! Tsemppiä sinulle! Toivottavasti päädyt kantasolusiirtoon :)

Hui, en ainakaan vielä ole siinä pisteessä, että lähtisin moiseen, mutta jos oikein pahaksi äityisi... Jään seurailemaan miten toipumisesi etenee...

Itse kadun joka päivä sitä, etten hakeutunut kantasolusiirtoon aiemmin! En suosittele odottamaan, sillä sairaus saattaa käyttäytyä arvaamattomasti ja aiheuttaa peruuttamattomia vaurioita.

OK, jännä nähdä mitkä lopulliset tulokset tuosta hoidostasi...

Sorry ivonna for the late reply! I am on the roller coaster right now with my old MS symptoms, some days are difficult, other days I feel better...Recovery is happening, just slowly.

Thank you for your lovely encouraging words Kristin! :)

Thank you Todd for your support! I really wish you didn't have to suffer...undergoing HSCT gives us hope...