First Relapse in 6 Years

[agate]

Reading between the lines here a bit, I'd say someone in the medical field must have been doing some predicting, and it wasn't a sunny forecast at all. I don't know when doctors are going to figure out that they may have lots of medical training but a crystal ball isn't part of their equipment. And MS seems to be one of the most unpredictable disorders.

I think you're being very smart in backing off from these notions about what the future might hold and trusting what you know about your own condition. Sometimes it takes many months to get back what we've lost.

As for the self-cathing, after years of reading people's posts, I've noticed that quite a few people do self-cathing for years and get along OK with it. Still, it's something you don't want to have to do because it does raise the risk of infection.

I hope--and believe--that you'll come out of this far better than some may be predicting. If the urologist is constantly being all gloom-and-doom, it might be time to think about a different urologist. I've been to 3 different ones over the years and one was perfectly terrible but the other two were adequate though I don't think any of them knew much about MS and the way it behaves.

Maybe we have to be our own doctors with MS, 95% of the time. Maybe even 99% of the time since the pandemic.

Hoping you'll hang onto your hopeful attitude!

[Earth Mother 2 Angels]

((((((DAR)))))) ~

You are so right that your system has been strained and stressed significantly. The steroid you took may have reduced your immunity, which is why you developed sepsis. When there are so many issues to get under control, it can take time to recover fully.

It is overwhelming, when physicians explain conditions to us. They have to give us the worst scenario to prepare us in case that occurs. That doesn't mean that it will, and we need to maintain a positive attitude to promote our own healing.

I recommend keeping a list of questions you have for your physicians, because their time is limited with each patient, and it's easy for us to forget something we want to ask.

My prayers continue for you and Curt and your complete healing.

Love & Light,

❤️❤️❤️❤️

*Virtual Hugs Are Germ-Free!


THANKS!

[Virginia]

DAR, I am truly sorry to read this. I had hoped that as soon as they got the sepsis under control you would be on your way out of there. I know you are concerned about the lack of physical ability that you had before the relapse. As Agate said it does sometime take a long time. I have read things on this board a long time ago where people would have bad relapses and then keep hanging in there until they came back. Maybe not quite where they were, but very close.

I do admire your courage and your spunk. I remember when I was concerned one time, for just a short time, that I might have to self cath. Cat set me straight, telling me that she could go in a restroom and self cath faster than most others could go to the toilet. Still, like you, I didn't want to do that and I was not comfortable thinking about trying.

Do not let anyone tell you something is permanent. You know your body better than anyone. Are you seeing a MS Doctor by any chance? I have found that most Doctors do not know about MS and that includes an awful lot of MS Doctors. When I know something is MS related I often have to remind them.

I know you must be very anxious to get out and be at home with Curt. Somehow, I just have to believe that it will not be as long as you are being led to believe it might be.

[Sunshine 2]

I was told I would have to self cath : like others with MS, I developed detruser extruser syndrome where the top of the bladder would squeeze to empty, and the bottom of the bladder would squeeze shut. A test showed this: The bladder became very large over time and doc predicted “ It will back up into your kidneys and you will need a kidney transplant”
He tried Flomax and Rapiflo and I could tolerate neither. He then said, “You will have o self cath.” At that point my PCP whom I trusted and loved said many of his patients self cath: That it is. Steep learning curve, but once it’s learned his patients loved it: They could do it quickly any time, any where”.
I then went to get a second uroloigst opinion as I ddin’t care for the first one who was loud, bombastic, impulsive, ….the second one said, Let’s try Alfuzosin (brand name Urotraxal. And it worked! I do still have to press on the bladder to get it going and wait a bit to be sure its empty.
He also prescribed daily antibiotic Nitrofurintoin to keep infection from coming back.
Bactrim was also recommended and superior re side effects, but I have a reaction to that.
Re the sepsis, I am very upset with the docs and RNs that were sloppy and did not prevent that.

All my friends report horror stories about the fractured health care system and how hard one has to advocate for oneself and coordinate care.

[Lazarus]

Thanks Sunshine…your information was very useful to me. I could not learn to self cath and tried a lot of new drugs but nothing worked. Desperate situation.
I solved it myself by asking if I could take more oxybutinin than II was taking. This is a drug I took for 25 years with great success. Anyway, turns out I was taking a very low dose of it so now I can manage and have freedom again.

The thing is…I remembered Cat Dancer talking about BOtox so I went to new urologist to get shots. Excruciating pain. (Most people have no problem). The urologist dropped me when that did not work but there was a generic! Pill solution. I have seen this type of practice before. It is set up to do certain procedures. Like a factory with a conveyor line…if you can not do the money making procedure there is no time to spend with you .

[Virginia]

I hope we hear from DAR again soon. I do hope she has better news.

[Jen's Solitude]

Sorry for the delay in replying everyone and thank you for the helpful replies and experiences. Currently I am in a rehab center.I have no use of my legs so cannot move from the waist down. I do physical therapy trying to get my muscles and bones and nerves to come back alive. My physical therapist are very encouraging and I have noticed slight improvement, but I have a very long way to go. I am determined to fight and regain some of my leg function. I think I will be here awhile though. But I like the nurses and aids and they take good care of me. I will try to remember to check in more often than I have. I'm finally think ing clear enough to do so.

[Lazarus]

Oh my goodness….best of luck regaining leg control. You can do it….I have known you for a long time and seen the efforts you have made. Great that you have good care. Sending you lots of caring thoughts…

[agate]

Well doggone. These things take time and more time, I've heard. Really glad you're not giving up on the legs!

I have the impression that patience and perseverance can really pay off.

Please don't worry about needing a clear head to take part here. I doubt that anyone here has a clear head or expects to have. We're all just muddling through in our muddleheaded way.

[Virginia]

DAR, so glad to hear from you. It must be very distressing for you not to have any use of your legs. You do seem determined and that is a really good thing. I am glad you are being well cared for where you are.

You are missed on here and as Agate said few of us here have a clear head, we're just getting by as best we can.

Let us hear from you as often as you can.

[Jen's Solitude]

Will do my friends, thanks again for being a dependable part of my life and recovery.

[Virginia]

We will be here for you DAR. I just hope you get better soon and can become more a part of us again.

[agate]

Dar, you've been here for many of us very kindly and dependably over the years. The least we can do is to be here for you.

[Virginia]

Hoping to hear from DAR again soon. I know everyone is.