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1215483 tn?1306255855

THE RARE FORMS OF M.S.

ID LIKE TO HEAR FROM MS PATIENTS THAT HAVE THE RARE FORMS OF MS.
INVOLVING KIDNEYS,LUNGS. ETC.

I HAVE MS. WITH STAGE 3 CHRONIC RENAL FAILURE , BUT IM STABILIZED RIGHT NOW.
IF YOU HAVE ANYINFO TO SHARE, PLEASE WRITE!

THANKS SO MUCH
s.
5 Responses
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704043 tn?1298056844
i  didnt realize    THERE  WERE  DIFF.   FORMS  LIKE THIS--    HOPE  SOMEONE  CAN  HELP YOU!1
  YOU  HANG  IN  THERE!!     TICK   WISH  U   THE  BEST!
Helpful - 0
Avatar universal
Hi. Usually MS is differentiated another way---Relapsing/Remitting, Primary Progressive, Secondary Progressive, and Progressive Relapsing. About 85% of MS falls into the first category, at least at the beginning. I'm not sure what percentage of RR later becomes SP, so I hope someone helps me out here :o)

Primary Progressive accounts for most of the rest, and Progressive Relapsing is the only rare form. In PR, the disease shows continued progression, with relapses on top of that. Is this what your diagnosis is?

Or are you asking to hear from people who have autonomic nervous system involvement? That could include lungs, heart, kidneys, etc., all organs over which we have no control. We do have quite a lot of members here who have lung or stomach problems, issues with esophagus, trouble regulating body temperature, and so on. I haven't heard mention of kidneys, unless there has been damage from urinary tract involvement.

Although many of us do battle these problems, we haven't had it actually confirmed that most of it is due to MS. We do suspect so, and there has been research showing MSers have more than their share of this kind of thing.

Could you tell us a little more about your circumstances, and whether your doctors are sure MS is the cause? We'd like to learn from you, and are glad you've joined. You're most welcome.

ess
Helpful - 0
Avatar universal
wow sickofsick62. i havent been able to muster up the courage to go to the gastro, but after readiing your post i know i need to!! i have 80% feeling in bladder and bowels and lately it has gotten horrible. i may use the bathroom once or twice a month. its terrible and it is my little secret. so many doctors and just the fear of something else, you know. i hope you find the answers you are looking for, but know that you have helped me, thankyou so much
Helpful - 0
611606 tn?1315517767
Hi, Like Ess, I haven't heard of this DX, but that doesn't mean anything. I have been living with What use to be called  Chronic Progressive MS, for 25 years   I have never had a remission. My bladder, intestines, colon, spine, eyes and legs as well as upper respiratory systems have all been effected.

I am not sure what information you are looking for.  But you are with the right support group. This Group is filled with so many carring and helpful people..

You hang in there and It helped me when I first joined them just knowing I was no longer walking alone. They have seen me through some rough moments...
(That's an under-statement)


Sending you special hugs {{{{~!~}}}} on the winds...DJ
Helpful - 0
1453990 tn?1329231426
I GUESS MS CAN EFFECT ANY ORGAN CONTROLLED BY THE CENTRAL NERVOUS SYSTEM, BUT IT HAS MORE TO DO WITH CAUSING OR FAILING TO CAUSE MUSCLE CONTRACTIONS.  YES, THE "HUG" CAN EFFECT BREATHING.  I CAN SEE WHERE AUTONOMIC FUNCTIONS CAN BE DISRUPTED SO RHYTHMIC CONTRACTIONS FAIL TO HAPPEN.  MS IS NOT GOING TO DESTROY AN ORGAN (EXCEPT THE BRAIN AND SPINAL CORD) DIRECTLY.  

STAGE 3 IS TYPICALLY CLASSIFIED AS MODERATE CHRONIC RENAL INSUFFICIENCY WITH 30-59% RENAL FUNCTION REMAINING.  THE COMMON LISTED CAUSES FOR CHRONIC RENAL DISEASE ARE:

SYSTEMIC HYPERTESION
POISONING BY NEPHROTOXINS
PROTEINURIA
INCREASED RENAL AMMONIAGENESIS
HYPERLIPIDEMIA
HYPERPHOSPHATEMIA
SMOKING

I DON'T SEE A WAY THE MS CAN DIRECTLY EFFECT THE GLOMERULAR FILTRATION RATE IF THE KIDNEY.  I GUESS MULTIPLE RENAL INFECTIONS COULD CAUSE THIS, BUT THAT IS REALLY NOT "CAUSED" BY MS, BUT BY A FAILURE TO MANAGE BLADDER ISSUES.

CAN YOU TELL US MORE ABOUT  HOW MS IS DAMAGING YOUR KIDNEYS?

BOB
Helpful - 0
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