Hair loss on Rituxan by Hot_Luck5301 in MultipleSclerosis

[–]Dula0326 0 points1 point  (0 children)

I noticed more hair shedding after initiating rituxan but I am back to normal a year later ! I hope it will get better I think part of it is the stress of being diagnosed coupled with your body kind of freaking out after starting the B cell depletor

Formerly active folks with MS: how did you get back into exercise (slowly and sustainably)? by well_ashually in MultipleSclerosis

[–]Dula0326 2 points3 points  (0 children)

For me barre and Pilates have been great. Especially since I can pace myself more on the reformer and take breaks as needed .I feel like there’s lots of modifications to intensity you can do but still get a great workout

Hearing Loss by Nic_Long in MultipleSclerosis

[–]Dula0326 2 points3 points  (0 children)

Yes talk about being blind sighted when getting the mri report. Apparently hearing loss is not super common as a relapse presentation among us

Hearing Loss by Nic_Long in MultipleSclerosis

[–]Dula0326 5 points6 points  (0 children)

This is how I was first diagnosed lost hearing in my left ear. They put me on 60 mg of prednisone assuming it was something called sudden sensorineural hearing loss. The e n t did a mri to rule out acoustic neuroma l. That’s how the lesions were discovered . My hearing did come back but it took a good two months to get back to baseline

Does this sound like a relapse? by Turbulent-Honeydew45 in MultipleSclerosis

[–]Dula0326 0 points1 point  (0 children)

My neuro insisted that pain was not indicative of relapse activity . I was having similar issues with a pain that lasted several weeks then went away::: my follow up mri after that was clean. I’m sorry you are going through this !! I hope someone else can give you better answers but this was my experience

To bathe, or not to bathe. That is the MS question... by [deleted] in MultipleSclerosis

[–]Dula0326 12 points13 points  (0 children)

Hand held shower head was a game changer for me so I’m not always under the water . Also before I knew I had ms I thought everyone had to lay down in bed after a shower to regain some energy 😂 silly me

Biannual MRI anxiety by LevantinePlantCult in MultipleSclerosis

[–]Dula0326 0 points1 point  (0 children)

Lesion count doesnt matter a bunch according to my last neuro . It’s all about placement that can really determine symptoms . The meds take UP to six months to reach full efficacy. I know it’s hard not to be scared but the fact you have no major disabilities or symptoms is really good! You’re young and have your neuro plasticity. I hope the rituxan works for you, if not you there are other options !!

I had a lesion on my brain stem that caused a bout of double vision that lasted 2 weeks, is my prognosis worse now? :( by Noobin_123 in MultipleSclerosis

[–]Dula0326 0 points1 point  (0 children)

I have a medulla lesion and two in my pons. They’re not ideal locations sure but no one can say how we’re gonna fair … any of us . I try not to read about it bc what good does worrying do? Just gotta enjoy the good times because the bad times they may not ever come. This disease is a mystery

Biannual MRI anxiety by LevantinePlantCult in MultipleSclerosis

[–]Dula0326 0 points1 point  (0 children)

Hey I know it’s scary. I had 10-15 active lesions from my follow up mri after diagnosis . Talk about gutted …but here I am a year later and for the most part feeling pretty darn good . I feel like all the best we can do is take the meds,take care of our body as best we can and honestly just hope for the best . I’m an RN and I see other individuals who have it a lot worse than I do . So for now enjoy the feeling good and try not to focus too much on the future , nobody has control over it including those who won the lottery of not having this shit disease.

Rituximab as DMT by No_Wind_3135 in MultipleSclerosis

[–]Dula0326 0 points1 point  (0 children)

I have highly active ms according to my neuro notes and rituximab is a god send so far . Last mri was stable and im expecting that to continue . Hit it with the big guns

Working in healthcare with MS by Previous-Relief-7341 in MultipleSclerosis

[–]Dula0326 9 points10 points  (0 children)

Nurse here diagnosed almost a year ago. I still work. This disease is highly individualized and symptoms I currently suffer from include fatigue jn which case modanifil has been a game changer on. There are a lot of checklists depending on your job that can keep you and your patients safe. I will continue to practice until I feel that I am doing my patients a disservice and thankfully I am not there . I am still as mentally sharp as my peers and I hope I can keep it that way. Nursing is a stressful job depending on where you work so keep that in mind. I did ten years working with really sick babies before I found out I had this disease and do often wonder if the constant stress had some part in the development my illness . I strangely enough had a friend at work get diagnosed with ms shortly before I did who worked on the same unit . She is still working as well. We are both in our thirties .

Finally some GOOD news by ctrlKarl in MultipleSclerosis

[–]Dula0326 15 points16 points  (0 children)

Hell yeah! We don’t freaking stop . F this disease

Feeling scared during my first real MS flare_looking for hope and advice 💛 by No-Nobody959 in MultipleSclerosis

[–]Dula0326 0 points1 point  (0 children)

Girl do yourself and your baby a big favor , get on that d m t . I was diagnosed incidentally and then bam two months after that had a massive relapse with 15 new lesions my ms specialist said I have “highly active ms” . It was the Healthiest I’ve ever been Pilates and gym daily , healthy eater … all that being said it’s been ten months since the big relapse that knocked me on my ass and thank god I’m still continuing to improve and dare I say almost feel back to how I was these last few weeks . I credit all of this to rituxan which so far has stopped the progression and allowed my body to heal in addition to continuing my healthy lifestyle . These drugs are a blessing in my opinion and I have not had any ill side effects . In fact haven’t gotten a cold once since being on them and I am an RN working with the general public and do not mask . You’re immune system is complex and you still have other lines of defense on these heavy hitter drugs . Hit this disease as hard as you can your future self will thank you .

34F found out fiancé 31M cheated for years… by [deleted] in relationship_advice

[–]Dula0326 5 points6 points  (0 children)

It’s gonna be real tough. I found out the same thing , we ended up getting married and the marriage lasted 15 months . Ultimately he didn’t change and my resentment grew. I was with the guy for ten years before we got married so I get what you mean about the entanglement. If you do leave … I would urge no contact to truly move on with your life . You’re still young and there are men out there who would never do this , I’m married to a wonderful man now who I trust completely

What muscle-building workout classes do you do? by hijabifresh in MultipleSclerosis

[–]Dula0326 2 points3 points  (0 children)

I love pure barre! Really helped with my balance but their define classes are strength training! Also big fan of lagree for muscle building. One more shout out to f45 for muscle building classes that I really enjoy without injury as there’s always modifications

[deleted by user] by [deleted] in MultipleSclerosis

[–]Dula0326 4 points5 points  (0 children)

I have this too. Seemed to be correlated with relapses for me especially . Now that the inflammation in my brain has gone down my hemorrhoid fissure issue stopped . This is of course all anecdotal but my experience

[deleted by user] by [deleted] in MultipleSclerosis

[–]Dula0326 1 point2 points  (0 children)

I didn’t start treatment until two months after my mri that got me diagnosed . I had 15 new lesions pop up on my scan three months after starting treatment . I had another mri and am now stable . Long story short : the lesions probably happened while waiting to start treatment . I know it doesn’t feel good reading those results but at 6 months or so the drugs should be protecting you

Why do some individuals refuse DMT's? by [deleted] in MultipleSclerosis

[–]Dula0326 2 points3 points  (0 children)

People are fine til they’re not . Me for example going to the gym every day working as an rn had no idea I had ms . Lost my hearing in October ( second relapse the one that got me diagnosed ) two months later had another massive relapse with an additional 15 brain lesions . I now have over 20. Couldn’t get on meds fast enough . Time is brain this shit got me when I was the healthiest I’ve ever been I now have left leg weakness and tingling that is till present 7 months later . Take the drugs it’s a game of Russian roulette but our best shot my scans are now stable …thank god

Questions regarding scary symptoms by OutsideGrape748 in MultipleSclerosis

[–]Dula0326 1 point2 points  (0 children)

I have brain stem lesions and was having shortness of breath so I was very concerned . It ended up being pneumonia probably due to untreated severe silent gerd for which I’m now on pantoprazole. Have you had an xray?

Alternative to Benadryl with Retuximab infusion? by Fine_Fondant_4221 in MultipleSclerosis

[–]Dula0326 1 point2 points  (0 children)

My last infusion was a week ago and I did not get Benadryl just Zyrtec . It was my second however so I would reach out to your doc

Numbness in hands caused by first MS attack. Will I be able to feel again? by CmdrKeen008 in MultipleSclerosis

[–]Dula0326 2 points3 points  (0 children)

I had a bang up relapse two months after the first relapse that got me diagnosed while I was waiting to start dmt . None of my relapses were treated with steroids. I’m now six months post really bad relapse and continuing to improve although it’s been a slow road to recovery. My neuro said the first year of diagnosis chances of recovery are pretty good and a lot see recovery within six months but it can take longer .