If it's not one thing...

[newbie but goodie]

I've been dx for 2.5 years now and physically am feeling much improved. I changed meds a year ago, quit smoking, started exercising and practicing some good old self care. I feel good physically. Feet are not numb. Lots of pain is gone. Walking is good, I even run for a few minutes at the gym!

But...

I am struggling with two new and weird symptoms. 1. I am having bladder spasms and repeated utis. Not sure what to do here. My PCP is happy to give me Valium and hope for the best. The frequent antibiotics are wearing me out though. 2. My right eye is twitching. Like crazy. More like convulsing. It's really crazy. 3. I am lonely. Dealing with ms and life is overwhelming and I was dx right as I was running ( with good reason) from a life I needed to leave behind.

I guess I should be happy I only have these two issues currently and I am in a good place otherwise but I wonder will there always be something? Will I ever feel completely okay again? It's getting depressing. My most recent mris looked good so that is good but dang if the constant issues aren't dragging me down. I don't know if depression is a sx of ms or a side effect of gilenya but I am feeling it so acutely.

How can I start over when I am so dragged down? I'm afraid for my future.

[22cyclist]

Newbie: you need to see a urologist. They can help you with your problems with both your urges, hesitancies, and UTIs too. A regular doctor is not really skilled enough to help you through this.

I can tell you after going through 10 years of RRMS and now SPMS that it is always something. The more years it is the more it is always something, even on DMTs. You never really go back to normal after a relapse, so a symptom is left behind, it may not be as bad as the relapse was, but it is there.

As far as depression goes, it comes with MS. It may also be more likely with your DMT, you will have to read about it. It is way more common with the interferons. This is another thing you need to tell your neurologist about (along with the results of your urologist visit).

I hope you feel better soon and wish you the best. Let us know how it goes, OK?

Lisa

[Marie12]

If there was a way for family to understand more . . . . . . . . .

I know they can only be asked to do so much. But do they really know what we need? For years, I didn't ask for anything. Now I do ask, so they will understand more. But I can nowhere achieve what I used to do.

It's not just the walking, but I cannot use my brain more than a half hour a day. I used to have an hour and achieved a lot in that hour. But a half hour, is difficult to even shower and arise for the day. And all the new medical stuff, I am just unable to achieve success.

It's July, and I have to wear a coat/sweater due to the jaynaud. I had never even previously heard of this illness. So, if there's a chronic illness that's difficult, primary progressive ms, Jaynaud illness, body temperature 96.5 instead of 98.6 Prediabetic.

Ok, so if I no longer use correct English like I did years ago when I worked, well, can I just have something. I have never been a fan of improper english/spelling,

[Thinkimjob]

Hello. I'd say things are going pretty well, except for the loneliness.

This I understand. It is so hard, because old friends quietly excuse themselves from the the show, and I've found when you have a lovely disease like MS, you tend to attract people who are, well, a bit weird.

Hypochondriacs absolutely LOVE me, for some unknown reason. Possibly because my ability to escape their company is limited.

Breast cancer - Mum had it, support, normal conversation galore. Brain haemorrhage - people couldn't have been nicer to me.

MS, oh dear, you're really not going to get better, so I'll just back away slowly, after delivering a long lecture on the evils of Diet Coke.

Thank the risen Lord for the internet.

Try to get the UTIs under control. Dunno about Valium for various spasms, and I speak as a fan of benzodiazepam in general; trouble is once you start it can be hard to stop.

[kelm10]

agree

I agree with Lisa. See a urologist about the UTIs. There is medication that is better then valium for them. Drink lots of water to conteract the dry mouth and chew gum.

Loneliness, is sometimes harder to battle. You have to reach out in your circle. wether it be church, book club (books on cd works wonders sometimes to retain stuff), singing, ms dinners put on by the drug companies even if you do not take their drugs, support groups. But, reach out.