https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Mon, 04 May 2026 04:27:42 +0000 https://boards.hellobee.com/topic/multiple-sclerosis#post-2777748 Wed, 04 Oct 2017 22:54:39 +0000 MamaT 2777748@https://boards.hellobee.com/ <p>@The Dowager Countess: yes! The advancements in treatments over the past seven years is remarkable! Gives me so much hope for a cure. </p> <p>@ladybee: that’s a perfect attitude- cry it out and then fight! You got this! </p> https://boards.hellobee.com/topic/multiple-sclerosis#post-2777746 Wed, 04 Oct 2017 22:21:55 +0000 The Dowager Countess 2777746@https://boards.hellobee.com/ <p>I got diagnosed with RR MS seven years ago (at 28). I only found out because I went blind in one eye over the course of a week. Combined with that, plus a MRI showing some lesions on my brain and spine, I was diagnosed with MS and started on medication straight away. My eyesight came back with only a very, very slight change to seeing bright colours out of one eye.</p> <p>I'm lucky in that I've only ever had that one relapse and got better straight away. People are shocked when they find out I have MS. </p> <p>My neurologist said that in the past, it was difficult to definitely diagnose MS and people would be having attacks in different parts of their bodies, wearing them down until finally starting medication. </p> <p>Nowadays, people are diagnosed quicker and start treatment sooner. The medication available combined with the huge amounts of research being done on the disease means that quality of life is so much better for someone diagnosed with MS. My neurologist is confident that in his lifetime, there will be a cure.</p> <p>In the seven years since I was diagnosed, I have seen so many new treatments introduced. In the beginning I was injecting myself daily. Now there are tablets you can take or even once a month injections. </p> <p>Feel free to wall me if you have any questions! </p> https://boards.hellobee.com/topic/multiple-sclerosis#post-2777730 Wed, 04 Oct 2017 21:00:31 +0000 catomd00 2777730@https://boards.hellobee.com/ <p>I'm actually seeing a doc next week about potentially having MS. My sister's BFF has it and my friend's husband. It sucks and it's scary, but they live wonderful lives despite it. It's not fair, though. I have been diagnosed recently with multiple chronic illnesses (I'm 31) none of which were on my radR until after my second was born. It's so freakin scary and frustrating and makes me angry. I'm here if you ever want to talk on/off-line. A lot of my other diagnoses have similar symptoms to MS, as well so I get it and am similarly just starting the journey to accepting life with chronic illness and what it all means for my future. I feel like I recall you being I. The D.C. area, as well? (Ignore me if I'm thinking of someone else, but if you are - I'm up on the other beltway! :) the one thing we have around here is access to great doctors, which has given me a bit of hope at least.Anyways, I'll be thinking of you as you begin to process this. Let yourself feel all the emotions that will naturally come your way. </p> https://boards.hellobee.com/topic/multiple-sclerosis#post-2777727 Wed, 04 Oct 2017 20:55:27 +0000 ladybee 2777727@https://boards.hellobee.com/ <p>@MamaT: thank you. That is so sweet. Im giving myself till Saturday to cry and feel bad for myself. Then I guess I’ll be getting ready to fight. </p> https://boards.hellobee.com/topic/multiple-sclerosis#post-2777726 Wed, 04 Oct 2017 20:51:06 +0000 MamaT 2777726@https://boards.hellobee.com/ <p>@ladybee: Hi- I just wanted to check on you and see how you are doing? </p> https://boards.hellobee.com/topic/multiple-sclerosis#post-2777038 Mon, 02 Oct 2017 20:39:13 +0000 MamaT 2777038@https://boards.hellobee.com/ <p>@ladybee: I sent you a message to your wall! </p> https://boards.hellobee.com/topic/multiple-sclerosis#post-2777030 Mon, 02 Oct 2017 20:23:46 +0000 Foodnerd81 2777030@https://boards.hellobee.com/ <p>@ladybee: I'm so sorry. I used to work for an MS specialist and am somewhat familiar with it. There have been so many advances in treatments even since I worked there. It must be so overwhelming right now. I'm sorry. </p> https://boards.hellobee.com/topic/multiple-sclerosis#post-2777017 Mon, 02 Oct 2017 19:28:44 +0000 muffinsmuffins 2777017@https://boards.hellobee.com/ <p>I'm sorry you're going through this. I have personal experience with MS via my uncle and a close friends father but both had progressive forms of the disease. On the other hand, I deal with many patients at work with relapse remitting and from my experience most have quite high quality of life. Maintaining good strength and flexibility to continue with regular exercise and activities of daily living is crucial. I'm sure you'll get a good action plan soon but the waiting is so difficult. One small thought: my uncle hid his diagnosis from our family for years until his disease had progressed too far. As I said, he had the rarest progressive type of MS so not the same as you, but I encourage you to find support wherever/whenever you feel comfortable. I wish my uncle had reached out to us instead of trying to handle it all on his own in secret. </p> https://boards.hellobee.com/topic/multiple-sclerosis#post-2777013 Mon, 02 Oct 2017 19:05:53 +0000 gotkimchi 2777013@https://boards.hellobee.com/ <p>I'm so sorry! There have been many advancements in treatments and I have many patients who do very well and you would never even know. I would research and find a doctor you trust and go from there. I can understand why you're angry. I'd also recommend therapy or a support group if that's something you think you'd be open too </p> https://boards.hellobee.com/topic/multiple-sclerosis#post-2777012 Mon, 02 Oct 2017 19:04:06 +0000 agold 2777012@https://boards.hellobee.com/ <p>I'm so sorry. :heart: I don't have any personal advice. My best friend has MS. She's doing relatively pretty well. She gives herself a shot in the leg every couple of days. I know she's eligible for super super cheap utilities since keeping her house cool is a medical necessity. Her kids do not know about her condition. I hope you can take advantage of the best resources available and that you have all the psychical and emotional support you need. :heart: </p> https://boards.hellobee.com/topic/multiple-sclerosis#post-2777010 Mon, 02 Oct 2017 19:03:22 +0000 Anagram 2777010@https://boards.hellobee.com/ <p>@ladybee: I am so, so sorry. I don't have personal experience, but my thoughts are with you. Are you experiencing any side effects from the steroids? </p> https://boards.hellobee.com/topic/multiple-sclerosis#post-2777005 Mon, 02 Oct 2017 18:48:10 +0000 ladybee 2777005@https://boards.hellobee.com/ <p>I haven’t posted in awhile but I’ve had a shit week. </p> <p>Does anyone here have MS? I went to the ER a week ago thinking I was having a stroke (right side paralysis). It turns out I have Relapse Remitting MS. I’ve been on IV steroids since and will continue with oral for 12 days. My right side is slowly coming back. </p> <p>Basically, right now I’m waiting. They won’t have more information for 6 weeks when we redo scans to look for progression. </p> <p>I’m terrified and angry. The last five years have brought me a miscarriage, infertility, PPD/PPA and things were just starting to get easy. Now this. I’m only 32. This is forever. :crying: </p>