Feeling Hopeless

[loopey]

I have been dx for 4 years but had symptoms once in a while prior to that. One year before dx I had my first major episode with dizziness and double vision. The dizziness got better but never went away. About a year later the dizziness got worse and I was told I had MS with active lesions. I have been dizzy all day every day since then.

During the 4 years I also developed burning, tingling feet and hands, burning tongue and other sensory issues along with urinary retention requiring the use of catheters. 2 years ago I had to start using a cane for balance. I cannot drive anymore. I have multiple urinary tract infections and the antibiotics make me sick. I have had no new lesions since my first bad relapse 4 years ago and am taking Aubagio. However, for the past few months I have stomach issues when I eat and feel sick most of the time with an upset stomach and sometimes nausea. It makes me afraid to eat.

I am getting a urine culture to help id what antibiotic will help but that will only solve one of my problems. I feel hopeless. It's not like I can go to bed for a couple of days and "get over it". I can't call my doctor since there is nothing he can do about my symptoms. There is absolutely nowhere to turn for help. I am doing everything I can to cope but lately it isn't working.

There has been a lot of stress in my life lately with the UTI's and our dog died. I feel I can't discuss this with my DH because the dog affected him more than it did me and he is not emotionally equipped for my issues right now.

So I posted here where there is understanding. Thank you.

[Mamabug]

Sorry you've been having so many problems.

Here are some suggestions that worked for me, for just a couple of them:
1. Dizziness -- I was referred to a physical therapist who had experience with vestibular therapy. She was able to help me to determine which movements triggered the dizziness and give me exercises to trigger it, at a tolerable rate, in order to train my brain to be able to tolerate it again, without making me dizzy.
2. UTI's -- I started using D-Mannose, daily, to prevent UTI's. I've read that it can also treat it, instead of antibiotics, but I've never tried it for that. I used to get UTI's once or twice a year. I haven't had one for years, now. You can purchase D-Mannose at a health food store, or it is also available at amazon.com. I prefer the NOW brand, and I like the powder that you mix with a glass of water. But, you can also get it in capsules.

[zilphia01]

well ****

So so sorry you are in this mess. I wish I had answers for you, but at least you are here where we will listen.

[loopey]

Thank You

Thank you for your replies.

Mamabug, we crossed paths on another thread on D-Mannose. I have been taking it since then and my doctor also wanted to do the culture. I hope it helps since I get UTI's every couple of weeks. Also, I went to a vestibular specialist a couple of weeks ago and he told me that there was nothing he could do as my dizziness isn't at all vestibular. I was crushed because I was very hopeful.

These things are terrible but the problems with my stomach have taken what little coping mechanisms I had left. I believe this will pass, it usually does, but I feel hopeless and desperate right now. This is also stress related as our little dog suffered for a week before he died and 4 vets could not even tell us what was wrong. It has been a very bad few weeks.

[hunterd]

is it possible for you to get your antibiotic via IV?I also ttake meclizine for vertigo, I do not know if that will be of any help but I thought I would mention it. I hope you get everything figured out

[Jules A]

No advice I just wanted you to know I'm sending good vibes your way. Having MS is horrid enough without the loss of your dear dog also. Hang in there.

[jamilea]

Oh Loopey I'm so sorry that you are feeling hopeless right now and I'm so sorry that your baby died

I just wanted to post and let you know that you aren't alone. If your doctor cannot treat your symptoms, are you able to find a doctor who will? Have you tried some alternative things like ahem herbs?

I understand stomach upset and nausea. I wanna share with you a little trick I learned years ago from a cook at a restaurant I worked at. If you put 1/4 teaspoon of baking soda into a shot glass of hot water, as hot as you can stand it and put it down your throat, it will settle your stomach within a few minutes. It's a great and safe natural remedy that really helps me and a whole lot of other people.

You said it's making you afraid to eat. I understand that too. What are you eating though?

[sing_a_long]

Hi loopey

It sounds like you have been going through a lot - my thoughts go out to you.

Just wondering if you are taking generic anti biotics. I have previously experienced nausea with generics but did not get the same side effects with the brandname anti biotic.

My dr told me generics can have different INACTIVE substances to the original & and these inactives can cause side effects for some people.

I have been dx for 4 years but had symptoms once in a while prior to that. One year before dx I had my first major episode with dizziness and double vision. The dizziness got better but never went away. About a year later the dizziness got worse and I was told I had MS with active lesions. I have been dizzy all day every day since then.

During the 4 years I also developed burning, tingling feet and hands, burning tongue and other sensory issues along with urinary retention requiring the use of catheters. 2 years ago I had to start using a cane for balance. I cannot drive anymore. I have multiple urinary tract infections and the antibiotics make me sick. I have had no new lesions since my first bad relapse 4 years ago and am taking Aubagio. However, for the past few months I have stomach issues when I eat and feel sick most of the time with an upset stomach and sometimes nausea. It makes me afraid to eat.

I am getting a urine culture to help id what antibiotic will help but that will only solve one of my problems. I feel hopeless. It's not like I can go to bed for a couple of days and "get over it". I can't call my doctor since there is nothing he can do about my symptoms. There is absolutely nowhere to turn for help. I am doing everything I can to cope but lately it isn't working.

There has been a lot of stress in my life lately with the UTI's and our dog died. I feel I can't discuss this with my DH because the dog affected him more than it did me and he is not emotionally equipped for my issues right now.

So I posted here where there is understanding. Thank you.

[Mamabug]

So sorry, Loopey, that you keep running into brick walls.

[Kimba22]

Hi Loopey,

I wonder how much Aubagio might be contributing to some symptoms (nausea, burning, uti's). Just a thought. https://www.drugs.com/sfx/aubagio-side-effects.html.

Went through a time I had repeated nasty UTIs. Combination of retention and a different DMT (Gilenya) created perfect storm for me and a UTI went septic - twice.
Self cathed for several years, but recently had to move on to a suprapubic catheter. Delayed that as long as I possibly could.

Burning has now spread to most of my body, gets so bad sometimes I'm just beside myself in pain. Neurontin doesn't touch it. My MS Specialist has had good results with Doxepin, but it made me very weak. Take Lyrica now, not perfect, but the number of intense burning episodes has decreased. Have had issues with extreme nausea out of the blue - have odonestron on hand for that. Doesn't work as well anymore, but thankfully, those episodes are far less now.

Nothing works for my episodes of dizziness, vertigo either. I know it's a miserable feeling. Sorry you have it every day. How awful. It comes in bouts for me, will stick around months, then at least disappear for a little while. Then come back. Once was so bad I was hospitalized - steroids finally calmed it down.

I know about trying to cope with all this darn disease brings our way. Lately have had more and more to deal with myself. Just never ends - and no signs of things letting up. Gets discouraging, and lonely. Greatful I can come here where are others understand, too.

Sorry about your dog, too. Our pets become an important part of our family.

Hoping things get better for you.

[REG53]

I am so sorry you going thru so much and I know how hard it is when you lose a pet, it's been years since I loss mine and I still miss her.

I hope you are able to find something that will help your sx's and feel better soon.

[jamilea]

Loopey, how are you feeling now?

[palmtree]

You might ask your doctor about the option of treating your UTIs with IV antibiotics. I just got out of the hospital...again for a severe UTI. The IV antibiotics help so much. I have a queasy stomach, too. I've had to pick out things that are easy on my stomach and what tastes good to me. Vanilla milkshakes are number one on the list.

[Kimba22]

I just got out of the hospital...again for a severe UTI.

So sorry, Palmtree. I hope you are doing better, now.

[loopey]

Loopey, how are you feeling now?

I am grateful for all the understanding I get here and I do feel better knowing that I can vent here and people know what it is like. Thank you all.