Questions on initial symptoms

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esoR
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Date Joined Jan 2007
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   Posted 6/20/2011 8:36 PM (GMT -6)   
Hi,

I'm from the ostomy strand and just had a question about MS. In 2006 I had a severe gut injury and lost the use of my colon, rectum, AND small bowel. I had to live on nutrition drinks for 7 months then sometimes had small bowel adhesion obstructions on those. Lost 1/4 of my body weight and lots of muscle. At that time I developed severe fatigue, lightheadedness, an uncoordinated feeling, felt like I was staggering when I walked even though I wasn't. Was given no parental nutrition during this time so 7 months with very little nutrition I thought could do this to a person.

FINALLY found a surgeon who could fix me up the best that could be done. He got my small bowel out of dense adhesions and did a permanent ileostomy (I empty waste into a bag out of my small intestine.) I was grateful something could be done to save my life. However, when I resumed the ability to eat, my symptoms did not improve as much as I would have thought. So am looking to see what else could be giving me these symptoms.

The reason I thought of MS is that I read that many people with MS have much worsening of their symptoms when it gets hot out. Mine REALLY worsen with the heat. I make sure to keep hydrated enough as I know that is an issue for ileostomates.

Do these sound like MS symptoms. Sure hope not but just needed to check with those familiar with this disease.

Thanks for any input. I am 55 and have no other significant health issues. I get B12 shots monthly as I no longer can absorb this from the food I eat.

Rosemary

Gretchen1
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Date Joined Jan 2007
Total Posts : 3571
   Posted 6/21/2011 6:50 PM (GMT -6)   
Your symptoms could be MS but MS is a great mimic. It shares symptoms with many other diseases. My presenting symptom was severe vertigo. You should make an appointment with a neurologist and preferrably an MS specialist. A neuro exam for MS typical reflexes and responses will be administerd and then it will be an MRI of the brain.

Just out of curiosity, what is parental nutrition?
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 6/21/2011 8:41 PM (GMT -6)   
Hi Gretchen,

Thanks for your response. I will do what you suggest. Glad they can tell if it is MS with the brain MRI.

parental nutrition is like IV nutrition only it goes into a vein around the heart. It does carry with it risks of infection, but is what people normally are given if they cannot eat for extended periods of time.

Rosemary

Gretchen1
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Date Joined Jan 2007
Total Posts : 3571
   Posted 6/22/2011 8:19 AM (GMT -6)   
They can't always tell. MS is a poorly understood disease. You can have symptoms before enough damage is there to show lesions on an MRI. You typically won't get a diagnosis of MS without those lesions. If the doctor suspects MS but no lesions are present then they do a "watch and wait" protocol. If lesions don't show up in the first year, then often MS is ruled out. It is not a quick or easy disease to diagnose. Many people have it for years before doctors figure out what is wrong and that delays treatment.

By the way, treatment is extremely expensive. Do make sure you have good insurance before MS is indicated on your medical records anywhere................prior to seeing a doctor about it. That includes life insurance if that is important to you.

Metabolic issues can also cause the symptoms you are describing. I hope you can have MS ruled out.

Thank you for the information! I hope you feel better real soon.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 6/22/2011 8:56 AM (GMT -6)   
Gretchen,

Thanks for the scoop on this. What metabolic issues could be causing my symptoms? Do you know?

Rosemary

Gretchen1
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Date Joined Jan 2007
Total Posts : 3571
   Posted 6/22/2011 11:06 PM (GMT -6)   
I am not a doctor. There are many metabolic issued that cause fatigue. These can be related to food/nutrition absorption. This can happend anywhere along the digestive tract but can also happend on a cellular or mitochondrial level.

Have you seen an endrocrinologist? I may have spelled that incorrectly.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 6/23/2011 2:42 PM (GMT -6)   
Yep have seen endocrine docs, heart docs, nutritionists, GI docs, Rosemary

Thats why I am thinking a brain MRI, neurologist, ENT (middle and inner ear doc).

Nobody seems to really care due to me being gut injured by surgeons thus triggering all of this. But things are as they are. Makes it hard to get diganosis and treatment even for unrelated causes if you have been iatrogenically injured. You sort of enter a medical, legal, political swirl that you did not cause in the first place. I can't even get in to see a trauma specialist counselor. Am still pursuing that too. Rosemary

hillbumm
New Member


Date Joined Jun 2011
Total Posts : 6
   Posted 6/25/2011 10:03 PM (GMT -6)   
My inital symptoms came about after a 3 week long bout with a severe urinary tract infection.
I was so sick with what I thought was the flu and stayed in bed for nearly a week before going to the hospital
I was given antibiotics and stayed in bed for 2 weeks longer...then on the day I felt better my husband suggested a trip to Lowes to get flowers.
while there my foot kept feeling like it was asleep and I kept stopping him to loosen my shoe laces and by the end of that day the numbness traveled up my leg.
We attributed it to my being weak from being so sick and sadly the numbness attacked a different part of my body daily(even my lips turned numb)
My family doctor did a few simple tests and bluntly said "hun I suspect MS) and the tests began..lots and lots of them with the final being the spinal tap that gave the positive DX.
Thinking back I realized I had other symptoms like an getting sick to my stomach and aggitated and confused if I got over heated..and some confusion I blamed on trying to jungle to many things at once.
Alot of medical conditions mimic MS...
I wish you luck and a prayer that you don't have MS..you seem to have a ton on your plate already... good luck

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 6/25/2011 11:43 PM (GMT -6)   
hillbumm, thanks, yeah I sure don't want this to be MS on top of having an ileostomy with possible danger of adhesion reobstruction. I feel like I could not handle one more big health issue. I literally could not. Thanks for telling me about how yours evolved. They do say that MS is either hereditary, environmental, or from a virus. Your's obviously sounds like it came from an illness you had. Scary symptoms. I could never get my spine tapped as I have had a case of RSD in the past from a nicked median nerve which happened during carpal tunnel surgery. Luckily I got out of that after 13 nerve blocks. ONE would think I would have learned about surgeries, but they told me that only happens for surgery on arms or legs. RSD is severe shooting nerve pains in case you were not familiar with that. What turned out actually to be unfortunate for me was that a councilor of mine helped me tooooooo well in getting over the fear of getting RSD again, that I basically forgot about it, thus getting into real trouble having my sigmoid colon removed then the whole case snow balling into adhesions and permanent ileostomy needed to save my life. (Of course had the original scan been correctly read, it would not have indicated a redundant sigmoid colon and thus no doctor would have opined to remove it and I would not have had it removed). The Karma I have had, I sure hope no MS.
Rosemary
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