So sick and tired: I am sorry I haven't... - My MSAA Community

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So sick and tired


I am sorry I haven't been on in a while. I have been in either the hospital or nursing home/rehabs mor than I can count since early summer. I live in a small rural community and our local hospital does not have a neuro dept. Everytime something goes wrong they pagkage me up and send me to Hartford Hospital. qbout 2 weeks ago, I started having severe dizzy spells, not the ones where the room is spinning just very lightheaded where I feel like I am going to pass out. My Dr. ordered an MRI and it was done on a friday. By sunday I couldn't take it anymore and also was getting severe headaches and pains in my shoulders and down my both arms to the elbows. I ar rimes had such memory fog, not being able to remember things.They admitted me and did another MRI, the results showed quite a few things wrong, but her not being a neuro Dr. decided to transfer me back to Hartford where at least they could compare all my MRI's. They were ooked solid and admitted they had patients on gurneys in the hallways waiting for beds. She tried one more hospital, another teaching hospital and they agreed to admit me. This was friday, one week after my 1st MRI. She ordered her own MRI and compared all 3 all done in 1 week and they all showed the same. She said there wasn't any change so she was discharging me. Mind you, I have many multiple medical issues including Lupus, antiphospholipid syndrome and others. I asked her how can you compare 3 from the same week, it doesn't make any sense, all you need to do is get in touch with hartford for my most current MRI from there and see if any changes have occured since August of this year. Even my o2 sats were down and the previous hospital recommended using 3 liters of O2 constantly. She discharged me but asked which VNA service took care of me. They sent a 3 page fax to them which stated I was being discharged with a foley cath after giving me 40 mg lasix for fluid. I don't have a cath, and i do believe i did get the lasix instead of my pain meds before discharge because all I did was pee all night long. The blunders were amazing at that hospital. I was diagnosed in 2000 2ith MS and 2001 with Lupus. After the 1st bad attack then, underwent different types of meds and solumedrol. It did put me on my feet. However since early this summer its been one exacerbation after another and nothing is helping. That supposedly neuro dr wants me off of 2 of my meds ordered by my MS dr saying they aren't good and could cause dizziness. Well, I havent been taking them and the weekness is horrible, I sleep 18-20 hours a day but in intervals, have about 12 dizzy spells a day and now not only am I urine incontinent also twice today feces incontinent. I am ready to through in the towel. On top of this, in January I will be having my thyroid removed because after the biopsies were done,its believed I have thyroid cancer. For those of you who become incontinent, how do you cope?, I am 59 years old and I hate my life and this depression stinks.

8 Replies

~Hugs ~ dar58 lm so sorry that you have been going through all of this. I can't imagine the fustration your feeling right now. As of right now l am only slightly incontinent and take a med for it. But lm sure someone will be able to relate better than I. Although when l started it was, scary, angering, and l was utterly devistated. I was just turning 50.

Is there anyway you can see your old Neuro? Then maybe you can finally get some positive answers on what's going on? Let him compare the MRI's. ?

I know you're going through a hard time of it right now, but believe me when I say, We are all here for you! ♡


ps. I'm almost positive MSAA has material on incontinence. <~~ notice the almost. But they do have alot of resources to help with things like depression, which isn't something I take lightly. As l suffer from it also, and have for years.

Toll-Free Helpline: (800) 532-7667 MSAA

I'm always a message away :)

Hi Darlene, good to see you back on the forum, sorry you are still having a way too tough time, praying for you, hugs Jimeka 🌈

So sorry to hear about the issues you are having. I have lived with constipation all my 55 years and last year decided to change my diet with my wonderful husbands help! Every evening for dinner I have a salad which includes Kimchee, sauerkraut, humus and beets to help break up the taste of Kimchee. Trust me I am a whimp when it comes to spicy or hot food but I decided I am going to do this to try and solve my constipation issue without drugs. It has really helped me! I go daily or almost daily since I have been doing this for a year! Have gotten used to the taste of things I would have never considered eating like Kimchee and sauerkraut. They talk about how important our gut bacteria is and I am a believer! I just try to live one day at a time. I woke up walking and breathing today! Good luck and hope you are doing better very soon!

Hey, dar, welcome back. Cats3's advice is very good, because I, too, have read that fermented foods are very helpful for MS. However, you describe having horrific headaches as well, and if you are having migraines (which they may be) the fermented foods are the worst things you can eat.

I am not a dr but I have been on the medical merry-go-round as a patient more than once. To me, it sounds like there are too many cooks in the kitchen. Unfortunately, you have a whole closet full of disease syndromes, and some may conflict with each other; in other words, what might be a good remedy for one might be bad for another. I would think that the first thing to do would be to return to your original neuro who I assume was treating both your MS and your lupus. Unfortunately, sometimes we have to put up with side effects of the meds we have to take, and you need to determine whether your new symptoms are medication side effects or from the diseases you already have or whether you have picked up some new ones. In other words, what you've got is a whole tangle of wires and lots of people working on particular ones. Instead, I think you need to take the whole tangle and let one qualified person untangle it. I don't know if you are able to do this, but it might be a very good idea for you to try to get into a MS or neurological center of excellence and start over there, then let them refer you to a local doc who can take over your care once everything is straightened out and under control.

I, too, had terrible urinary incontinence. My neuro sent me to a urologist whose wife has MS so he gets it. He did a urodynamics test which was far less than pleasant, but everything was in working order so the cause was the MonSter. He put me on oxybutynin and it has worked miracles. Just in case, for long drives, airplane rides, etc., I wear Poise pads.

You are in my thoughts and prayers. Nobody should have to suffer like that. Best of luck and hope you are doing better soon.



Wow, I'm so sorry for all you are going through. I'm fairly new to this all, at just over 4 months since going numb. You definitely have my prayers and good wishes for some relief. Hugs, Lynn

Wow! Hi Dar. I feel so badly about the many different challenges you are facing right now. It seems as though your cross is so heavy to bear right now. You make my cross seem a lot lighter. I pray you feel a lot better real soon.

I got an elective colostomy due to bowel incontennce, also suprapubic cath. So I'm a two bag lady but it gave me freedom from being a prisoner of the bathroom.

I am SOOO sorry you are so sick and tired, I would be too if I had faced half the frustration you have had to deal with. I can not address a lot of the questions you have but I did have my thyroid removed a few years ago so I can talk first-hand about that. I was told, at the time that if one had to have cancer, thyroid cancer was a better one to have because it usually was contained, did not spread if caught in time, and was fairly easily treated, I obsessed before the surgery about having my neck cut open , but the incision did not bother me much as long I didn't turn my neck too much. I did, however, have the worst sore throat of my life for about 3 days, then it started to get better. Stock up on ice cream, pudding or custard, and maybe some American chop suey, or something soft and wet like that and if you have any questions about the procedure as it gets closer feel free to ask.

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