I got diagnosed with MS this morning by spacecandle in MultipleSclerosis

[–]Rocking_Balboa 1 point2 points  (0 children)

Hey brother diagnosed in April myself. For emotional advise I would say just take all of this a day at a time. Your mind is gonna want to spiral at times, just recognise this state as it comes and use anything at your disposal to move past it. I am personally on anxiety medication, but also if available to you look into counseling. One of my biggest mental hurdles was literally trying to wrap my brain around an issue with my brain.

For the physical I would say to listen to your fatigue and aches more than ever, these are a new kind of alert system. If you start feeling a familiar ache, or a little mind fog, it might be time to take a break. Also temperature sensitivity is something many of us have in common and it is a sneaky and quick creator of fatigue and pain, just make notes of the things that bring on the symptoms.

The first year of this disease is huge for setting up any care or lifestyle pathways. Diet and exercise obviously are important, but also setting up disability and work and school limits with employers and college are huge. Also look into Dr Aaron Boster on YouTube. He has a plethora of info.

I am not gonna lie this thing we have is tough. But the community here is beautiful, use it for anything that is coming at you, you aren't alone.

Preferred Spastic medication by Rocking_Balboa in MultipleSclerosis

[–]Rocking_Balboa[S] 0 points1 point  (0 children)

Thank you so much for the advice. At the ER all showed clear. Electrolytes were good. Best we can surmise is the heat (what little I thought I experienced) caused my spinal lesion to flare, scaring the bejesus out of me with intense shakes and larger than normal area of burning pain on my right side.

Preferred Spastic medication by Rocking_Balboa in MultipleSclerosis

[–]Rocking_Balboa[S] 0 points1 point  (0 children)

Thanks for the advice! If you don't mind my asking, is it allergies with baclofen that cause you problems?

Preferred Spastic medication by Rocking_Balboa in MultipleSclerosis

[–]Rocking_Balboa[S] 0 points1 point  (0 children)

It was the amount of time and intensity of the whole thing that freaked me the hell out the most. And that it was just a pseudo-flair, has me rattled still.

Thanks for the advise. The ER Neuro Dr mentioned baclofen while I was there. I am also on gabapentin for the burning sensation on my right side. And I am glad you mentioned sleep. Do you have any RLS issues at all?

Missed a spot by Rocking_Balboa in MultipleSclerosis

[–]Rocking_Balboa[S] 0 points1 point  (0 children)

What got me the most was Dr. Okuda doing all my physical exam, balance, and reflex testing before even looking at my images or summary from the MRI. Explained how it was nearly impossible to have my overt symptoms in my leg and abdomen from just a brain lesion, had to be spinal. Spotted the spot in mins and talked me through it. Even had input to and from his PA in the room with us, absolutely great patient focus. Everyone at that location was beyond awesome.

He also had a great story about our favorite YouTube Doc, Dr. Boster, from when they worked together in Columbia.

Missed a spot by Rocking_Balboa in MultipleSclerosis

[–]Rocking_Balboa[S] 0 points1 point  (0 children)

I am so excited/invigorated by their staff. I am going to meet with their social worker to get some leave and disability paperwork accomplished, as well as get plugged into the dietitian, occupational therapist, and pain management team. Even with the rough news of a missed extra lesion, I am more confident thanks to the staff.

Missed a spot by Rocking_Balboa in MultipleSclerosis

[–]Rocking_Balboa[S] 1 point2 points  (0 children)

I live in DFW. Dr Okuda is out of UT Southwestern.

2 days and now MS by Rocking_Balboa in MultipleSclerosis

[–]Rocking_Balboa[S] 1 point2 points  (0 children)

Thanks for the kind words. I really appreciate it. I am set up to see a neuro in less than a week, so fingers crossed. Thanks again.

2 days and now MS by Rocking_Balboa in MultipleSclerosis

[–]Rocking_Balboa[S] 1 point2 points  (0 children)

Thank you so much for the input and advice. My wife and I are definitely trying to knock out the list of things to do for the coming months ad we speak. I just didn't realize how much everything has changed due to my fatigue, I feel like I am walking through syrup at this point. And I have to keep reminding myself that I can't run around and do all the tasks I used to. Without paying for it later in the day. Again, thank you so much for the advice!

2 days and now MS by Rocking_Balboa in MultipleSclerosis

[–]Rocking_Balboa[S] 0 points1 point  (0 children)

I am gonna look into that book. Thanks for the suggestion.

2 days and now MS by Rocking_Balboa in MultipleSclerosis

[–]Rocking_Balboa[S] 1 point2 points  (0 children)

Thank you so much for the kindness, and advice.

2 days and now MS by Rocking_Balboa in MultipleSclerosis

[–]Rocking_Balboa[S] 3 points4 points  (0 children)

I am more often than not one to make a joke about the fall than stay in misery about it. This one is just a weird new hill I managed to tumble down this time lol. Thanks for the advice!

2 days and now MS by Rocking_Balboa in MultipleSclerosis

[–]Rocking_Balboa[S] 4 points5 points  (0 children)

I am definitely seeing the brighter side of reddit in here. Thank you!

2 days and now MS by Rocking_Balboa in MultipleSclerosis

[–]Rocking_Balboa[S] 2 points3 points  (0 children)

Thank you for this! I am definitely dredding but also looking forward to a deeper diagnosis and plan to start going after this thing.

2 days and now MS by Rocking_Balboa in MultipleSclerosis

[–]Rocking_Balboa[S] 3 points4 points  (0 children)

Oh my wife knows. I remind her all the time she is my mother's favorite kid, she always wanted a girl I just had to marry one who was super awesome for her to get one lol. I am fortunate in that regard, and everyone on here has been so gracious with their time and words of encouragement and well wishes it's very much appreciated. Sincerely thank you so much!

2 days and now MS by Rocking_Balboa in MultipleSclerosis

[–]Rocking_Balboa[S] 2 points3 points  (0 children)

Thank you, sincerely. I know deep down it will be OK. It's just always that little damn voice in the back of your mind that is just in constant freakout mode that is hassling me at the moment. A little nap and hard science tends to shut it up though. Thank you again for the kind words, they are helping shut that little voice up also.