MULTIPLE SCLEROSIS COMMUNITY
Where do I go from here?
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Where do I go from here?

This is more than a question..more like a summary and then questions.

I have dealt with issues for as long as I can remember. All pretty minor annoyances in retrospect to many

conditions..ovarian cysts, gallstones,,kidney stones, kidney infections, gastrointestinal issues, About 2 years ago, I

began having crazy bad pain in my right side. I was hospitalized because my right kidney was swollen and a couple of

stones. They found that there was a section of my ureter tube that was fused together, or dead or something, causing a

kink in the ureter..had an exploratory to find the cause of the kink. Nothing was found to explain it. I ended up being in

the hospital close to a month and a half due to the level of pain, and the fact that the kidney swelling would not go down,

and gastroparesis. (stomach was working at 3%). Was sent to Mayo clinic. Began testing there, and after a surgery to

reimplant the ureter, found myself in neurology because of the fact that all these issues seemed to be nerve related..I

also have a tremor in the left hand, marked weakness in left limbs..and very little feeling in the left hand (you pinch as

hard as you can, and I feel nothing)...had an emergency and had to leave Mayo in the middle of neurological testing, did

not get MRI completed. Had autonomy test and EEG, but do not know the results. Since that time, I have been

hospitalized a couple of times for severe kidney infections. I am not taking any meds unless I have to take a muscle

relaxer due to the spasms and pain in my side, although it doesn't really help much. I take a good multi and don't drink or

smoke. I try to drink a ton of water, and don't do soda or anything like that. In the last year, new strange symptoms have

presented themselves. I have what I guess could be called a twitch in my left eye. At first I discounted it, but now it is

happening at least 3 or 10 times a day, and my vision in that eye is getting strange..like there is a speck on my contact

making things blurry but doesn't go away when I take my contact out. It comes and goes..but it is getting frustrating.

Carpet hurts my feet sometimes, and my legs are always going to sleep and waking up..it's so annoying.

The lower left leg has sometimes has extreme "firework" pains shooting from my heel area and random extreme/hot cold

feeling that when it strikes it quite debilitating. I am not driving much due to the tremor, and the mental fogginess I have

had. All of the sudden I forget what lane I am supposed to be in and stuff like that. My brain just stops working. Usually if

I struggle for a word, I can figure it out..this is like the computer just goes to a blue screen of death and it's just gone. I

am reading words and numbers wrong..which has NEVER happened to me before. A hot bath seems to make it worse.

I get really loopy sometimes then. Have forgotten basic information after. All this strangeness combined with the kidney

infections and extreme constipation (naturals and doculate sodium/magnesium citrate does nothing anymore-up to 6 over the counter stuff a day), not to mention, the extreme fatigue..I just want help...and to live normally.

Doctors have tried to treat one symptom or another, but nothing is found. I want to go to a neuro again and finish the

testing..neuro at Mayo seemed to think we were onto something..but we don't have one locally . I am exhausted..my

family is scared..and I just don't know what to do next. Should I even be concerned? How much should I push docs for answers?
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3 Comments Post a Comment
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338416_tn?1260996698
It does sound like you have neurological stuff going on, but the kidney infections are not typical for MS.  You should definitely push for answers.  It's too bad that you can't go back to Mayo, but if you have the partial records from their testing, you should be able to go to a local neuro and at least start that process again.
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572651_tn?1333939396
Shels,
that list sure sounds neurological to me.  The kidney infection could be a side effect of a neuro problem.  If you bladder does not empty completely, and it refluxes into the kidney, it can easily spread injection.  This is why UTIs are so common with MS patients... the wrong signals get to the system and urine flow gets out of whack in more ways than one.

You don't list wher you are from - you definitely want to find a doctor closer to home who can help you figure out this mystery.

We;re here to help, if possible.  
Lulu
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667078_tn?1316004535
I have had both kidney stone and infection issues and have MS. I have two complete ureters on the left. Just because you have one thing going on does not rule out another.

Alex
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