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**agate** · 05-06-2021, 07:16 AM

I forgot to mention that this time around I have had trouble with my eye-sight. Slight pain in the corner of my eyes and the printed page was very blurry and look faded and washed out. It made reading very difficult. I am glad it is now clearing up and reading is more normal.

Could that have been optic neuritis? The neuro might want to know about it if you haven't mentioned it. I hope it continues to clear up.

**Jen's Solitude** · 05-07-2021, 02:58 AM

I can't believe I forgot to mention it to him. Turns out he decided to order 4 days of Solumedrol instead of 3. Since my sight is getting better all the time, I am assuming if I did have Optic Neuritis, it should improve and go away totally. I'm scheduled to begin receiving the infusion on Saturday morning. I should get the confirmation call from the nurse today.

Something new I found out, the infusion used to come all mixed together, but now the nurse has to mix it together when she arrives. There is a chance she will have to come every morning to mix together the 4 infusions. i'm hoping that will not be necessary, as I would rather start the infusion myself, once I get up and going. i'm told i will have to discuss it with the nurse to see what their policy is.

I was also told the infusion will only take 1 hour, which would be great. Previously, the drip took double the time and i would increase the speed myself to move it along. The actual Solu-medrol will be delivered today and it can be kept at room temperature, so I don't have to refrigerate it. Well, I think that is it for now, will just wait for the delivery and confirmation phone call.

**agate** · 05-07-2021, 07:12 AM

I hope the solu-medrol will prevent you from having any more optic neuritis episodes. You may recover completely from them but sometimes there are "deficits" and your best corrected vision may not be as good as it was before, unfortunately.

**Jen's Solitude** · 05-07-2021, 08:52 AM

Okay, I will keep that in mind, thanks for the heads up about the possibility.

**Virginia** · 05-07-2021, 03:21 PM

Dar, I had optic neuritis on several occasions before I knew I had MS. My Ophthalmologist says I have a blind spot in each eye. I have a hard time telling things like 3s from 8s and a few other things, but I have learned to turn my head and see things when I am reading and have a problem. I was not loosing my sight, I had brown outs when everything would just look dim. I can't imaging that I didn't go to my eye doctor. Instead I went to my then PCP and told him I was so weak my vision was turning dim. Little did I know. I am glad your vision seems to coming back. That is a scary thing to me.

**Jen's Solitude** · 05-08-2021, 09:18 AM

It does get my attention, Virginia, I noticed after my last eye exam that my prescription didn't seem to be strong enough. I am thinking about trying a new doctor, just to see what he has to say. I have diabetes as well as MS, so there are 2 reasons to be concerned. First things first though.

Unfortunately, my infusion has been delayed by one day. The nurse called and wanted to come at 4:30 this afternoon. I told her I would be up all night if she infused me that late in the day, so she agreed it would be better to come tomorrow morning. Hopefully it will go off without another hitch. The nurse seemed nice enough, but it seemed like she didn't know she would be infusing me with solu-medrol. I guess they are just sent to an address and not given many details. Anyway, another day another infusion. Ha!

**Virginia** · 05-08-2021, 02:06 PM

Every time I got solumedrol I drove myself to my Doctor's office and was given the infusion in his office. He usually gave me 5 days, but one time it was only 3. I did feel stronger after the infusions but it didn't last me long. I bet if I had known I had MS when my vision was getting dim he could have stopped the attacks without damage.

Good luck tomorrow morning.

**agate** · 05-08-2021, 03:15 PM

Dar, I hope that the infusion will go well and that the technician does her homework.

**Jen's Solitude** · 05-09-2021, 03:39 AM

Thank you both. I am 2 hrs away from the scheduled visit and I will be so glad to get this show on the road. Each morning I feel weaker and weaker and I'm sleeping so much. That has always been a sure sign that the relapse is in full swing and my poor body is trying its best to get me through it by causing me to sleep more. I know my sleep will be severely impacted by the steroids but it will be worth it in the long run. I'll update once the infusion is underway.

**stillstANNding** · 05-09-2021, 08:48 AM

Have a good treatment, DAR.

ANN

**Jen's Solitude** · 05-10-2021, 04:23 AM

Good Morning ANN, I did indeed have a good treatment. It was a little bumpy at first. My normal vein was to scarred from constant use over the years, so Lisa, my nurse had to start an IV in my right hand. It is not as inconvenient as I feared though, just have to get used to it being there.

Then there was a struggle adjusting to all the details involved in mixing the solumedrol myself. What a pain that has turned out to be. And every 15 mins. my bp had to be taken, also irritating to say the least.

It took a good 3 hours for the IV to finish between all the set up and mounds of paper work and training necessary. Needless to say I was beat by the time it was over. Today, I plan to take copious notes on every step of the procedures, so that we will be able to do it ourselves for the last two days. If I don't feel comfortable at the end of this treatment, she will have to come back each day to set everything up for me. Lsa is really nice and accommodating, so I know she won't mind coming back to my residence if need be.

Up on the upside, I have already recovered strength and balance in my right leg. And the nerve pain started subsiding after I ate dinner last night. I can even flex my right ankle and toes once more, which gave me great joy. lol With 3 more treatments to go, I'm hoping for the best. I'll post again and inform everyone how day 2 went. Let me know, if anyone has any questions as I'm sure I probably missed something.

Oh, and the metallic taste started up right away, but I found that butterscotch candy, graham crackers, ice cream and crackers help with the taste. I am also VERY hungry and have cravings for the most fattening desserts. LOL Okay, that will do it for now, Lisa should be here in about a hour.

**agate** · 05-10-2021, 07:33 AM

What an ordeal you've been having, Dar! But it sounds as if it's paying off for you. I'm so glad you're already noticing an improvement.

Butterscotch candy, graham crackers, and ice cream sound like just the ticket. Are those cinnamon graham crackers?

**Jen's Solitude** · 05-10-2021, 09:32 AM

No just the old fashioned plain crackers. Cinnamon sounds good though. Well day 2 is over. This time Curt and I were able to do the final steps, after the IV finished. Man, it takes forever for the IV to get done. I have to keep my right hand hanging down or else it takes even longer. But the good news is I am feeling even stronger today and I have already taken extra steps, which even surprised Curt. I want to try using my rollator, but I don't know if I would be potentially harming myself. So we are thinking about it. I want to stop using the wheelchair so bad that i can taste it. But I will try to be more patient. Tomorrow will be an early 7:am appointment. It will allow me to be finished around 10 or 11:00, so looking forward to that.

I was told that my pulse, heart beat and lung function are all excellent, glad o know that, especially since I am not very active. Okay that does it for my Monday update. Will post more tomorrow.

**Sunshine 2** · 05-10-2021, 11:24 AM

Originally posted by Jen's Solitude View Post

No just the old fashioned plain crackers. Cinnamon sounds good though. Well day 2 is over. This time Curt and I were able to do the final steps, after the IV finished. Man, it takes forever for the IV to get done. I have to keep my right hand hanging down or else it takes even longer. But the good news is I am feeling even stronger today and I have already taken extra steps, which even surprised Curt. I want to try using my rollator, but I don't know if I would be potentially harming myself. So we are thinking about it. I want to stop using the wheelchair so bad that i can taste it. But I will try to be more patient. Tomorrow will be an early 7:am appointment. It will allow me to be finished around 10 or 11:00, so looking forward to that.

I was told that my pulse, heart beat and lung function are all excellent, glad o know that, especially since I am not very active. Okay that does it for my Monday update. Will post more tomorrow.

This is all very encouraging. When they clear you for the rollator, do try it. It’s easy enough to regain muscle strength after disuse, but it’s harder to get flexibility back.
And don’t go all in; start with a small number of steps, then sit for a while. Until you find the sweet spot.....advice comes from experience.

**Virginia** · 05-10-2021, 08:11 PM

DAR, this is so great. You really do respond well to steroids. I hope you get another GOOD jolt tomorrow.

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