Another MS Rant...

[Liz-Liz]

Yesterday I was back in the ER for another infusion of steroids (methylprednisolone) for exacerbated symptoms. Thank goodness I haven't had an episode near as severe as the last. This is a topic i bring up A LOT. But when I'm brutally honest, I'm terrified.

 

Regular daily symptoms include:

 

*Right side limb weakness and fatigue

*Transient tremors, motor tics, involuntary spasms

*Memory loss and reduced attention span

*Irregular Sleep

*Numbness and Tingling in target areas

*Hypersensitivity on my left

*"Shocks" throughout my CNS

*Debilitating Headaches

*Poor balance - I use a cane on the bad days

*Pain. Constantly dull. Sometimes shooting.

*In the past few days I started seeing red flashes in my left eye.

 

The list could go on and on with all the bizarre quirks I experience on a daily basis. As if there weren't enough reason for strangers to stare already.

Thing is, that's not the scary part. I can deal with bizarre symptoms. Shoot, I used to just chemicals to feel stuff like this.

No. What terrifies me is the uncertainty. The powerlessness. The reality that, even on very expensive and aggressive medication, the disease appears to be progressing rapidly.

I have an MRI next month to see for sure if there is any new or active lesions.

 

When my doctor saw the first round of images he said very plainly,

"This is a lot. You've probably had this for 15 years already. I'm amazed you didn't show signs sooner. We'll do what we can to try to keep you out of a wheelchair for the next ten years."

 

I know none of this is related to gender or transitioning. Apologies if that's problematic, and for repeatedly posting about it.

I work with a therapist and will be attending MS support groups starting next month.

So many major upheavals in the past 18 months. Oh, how I miss the simpler days of school buses and homework. Never would have thought I'd say/write that.

 

Thanks for allowing me the opportunity to vent this out. Really ought to know better than to do something like this after an infusion. 😳

I could write all day without running out of things to say.

[Mmindy]

Liz, 

 

You are in my prayers. No need to apologize for posting your thoughts and feelings in a rant. Many of us want you to know that we are always here for you. Your postings are for you to release the stress you are facing.

 

Hugs,

 

Mindy🐛🏳️‍⚧️🦋

[Ashley0616]

Hi Liz,

 

I will put you in my prayers as well. You need to get off what is bothering you. This is what it's here for. If you feel the need to you can blog about it. One of the ways to deal with it is to write it all down. I may not be able to relate to MS but I have seen my grandma deal with it. 

[Liz-Liz]

It's just been a lot to process. I had hoped there'd be more time before another episode. I do appreciate the compassionate responses. Tyvm.

 

Crazy as it sounds, I wish it was something I chose to do that started all this. At least then I could take responsibility for it and justify the consequences.

Even crazier, there's days I think about stopping the meds and letting it run it's course. The certainty of disability is, in a way, easier to manage than the fear of if/when with no real answers. Most days I manage well enough being physically and mentally stable. Occasionally it gets heavy and I need a rest. 😮‍💨

 

 

[Vidanjali]

@Liz-Liz you'll be in my prayers. MS is rough. I only know seeing someone who's like a mom to me go through it. Above all, I pray for your peace of mind no matter what comes. 

[Ivy]

3 hours ago, Liz-Liz said:

No. What terrifies me is the uncertainty. The powerlessness. The reality that, even on very expensive and aggressive medication, the disease appears to be progressing rapidly.

It is frustrating to not be able to do anything to stop it.  I have a brother in law that has it.  In his case the progression has been fairly slow.  He just tries to live the best he can for now.

I am sorry for you.  It is unfair.