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I have been off the Forum for a bit dealing with acute needs of this body.  I was hoping someone else may have had something similar and could share their experience because I am over being a patient.  

 

Feb 15 had TPC w/ IPAA, April 15 had take down.  During that time I was plagued with spasms and 'pouchitis' etc.  Finally got my new GI to do a pouchoscopy end of August.  Found a tight stricture, and inflammation in the pouch.  Got dilated, started Canassa -- and life was 180 different.  Rare Levsin use, easy emptying it was a miracle.  Four weeks later the spasms started again, got in with GI, he did in office dilation and so far, so good. I have also been self dilating (got some finger cots) when I feel like I need it.  

 

During that time, in Mid september I really noticed my right leg didn't feel right.  The sensation on both sides on each side were not equal and the top of my right foot felt like prickly fire.  Over the course of a week, it felt like my foot was in cold water and the sensation of weakness and fatigue of the leg started creeping.  My foot falls off the gas pedal occasionally. I ended up seeing a neuroophtho guy for a brief vision change that happened in april and july.  He found axon loss in my right eye (I didn't know it was there). Runs a battery of tests, and it seems I now have Sjogren's.  Honestly, I thought the 'dry everything' was from the TPC, guess not.  Fast forward to clean brain MRI.  Then last week I woke up with the same fatigue sensation in my right arm.  It is kinda sloppy, dropping things occasionally.  Difficult to hold pens etc.  The thing is all the symptoms wax and wane but never really completely disappear.  

 

I went to the ED with the Arm stuff because I had been patiently waiting for testing, but it concerned me.  Got admitted -- c and t spine MRI clean.  LP cell counts normal, waiting for the send off labs to return.  The neurologist that saw me as an impatient is very nonplussed.  OT and PT found issues and recommended Neuro rehab...but the doc (and I am not generally a doc basher) just seems so relaxed about the whole thing.  WHY do I need neuro rehab if nothing is wrong?  WHAT is the cause?    I am just angry because I feel like stuff is happening and I am being dismissed.  I feel like the GI doctor did the same thing, nonplussed about my symptoms, THEN AFTER the pouchoscopy when there was something obvious he developed some empathy and urgency.  I don't get it.  I feel like medicine is turning into less about a physical exam and more about labs and imaging to determine things...and forgetting about a good PE.  

 

Anyone else on here with either MS or an MS mimicker -- meaning developed a de novo autoimmune disease that started doing weird things.  All my macro nutrients are normal.   I currently, have a spinal headache from the tap Tuesday.  I went to the ED Friday, and after 3 L of fluids really did feel some better and went home without a blood patch.  But now, since I am still having headache I wonder if that was the best decision to not push for one...but honestly after an hour and half LP requiring me to valsalva my csf fluid out, I really didn't want another procedure.

 

Thoughts?

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First off, I am so sorry. I understand the frustration of knowing in your heart that something is wrong but not knowing what or who to turn to.

Next, have you consulted with a good old fashioned Chiropractor? Not to diminish the symptoms but it also reminds me of partial nerve blocages. Could you be suffering from some sort of disalignment of the vertabrae? Pelvic nerve blocage?

Thyroid problems? (the cold feeling in the extremities?)

My mom started dropping things around the age of 50...I remember the curling iron falling from her hands and burning her, the blow dryer etc...and one calf shrinking. In her case it turned out to be both post-polio syndrom (she had very mild polio as a kid) and fibromyalgia.

Vitamin B difficiency? (it effects the nerves)

The only other thing that I can think of is some sort of toxicity???? Too much iron, mercury or another element? (have you started eating a lot of canned tuna? canned veggies?)

I only hope that someone finds the reason behind all of this and can fix it for you.

Sharon

I have a very good osteopath, and have gotten work.  No nerve or alignment issues.  My b12 is 'normal'. Thyroid levels normal.  Iron levels normal.  All the macronutrients are normal.  I am thinking of seeing an osteopath at Cleveland Clinic who does functional medicine to see if there is a biochemical micronutrient issue.  I have lost 30-35 pounds since the surgeries, the last 25lbs since 6weeks post take down visit.  I am eating 2-3K calories a day -- so I am finally not losing anymore, but it is hard to keep that much food going in the mouth.  And you know how it is...more in, more out, if you catch my drift.  ;-) I don't 'want' MS or anything else...I 'want' to get better and move on with my life.  And I feel like, I am getting a stink eye of what is your 'secondary gain'.  :-( So irritating...I wouldn't be surprised, and truly hope, that it is a nutrient issue that can be figured out.  Not working for now almost 10 months has been hard fiscally, and physically etc.  Just when the pouch and I were starting to get a long...this...

 

On the bright side -- the pouch and I were starting to get along!  The silver lining.  :-)

 

I think some of this is hydration -- and I can't figure out for the life of me how to get this body to absorb more water!

Hydration can be more than just water...Especially for us who lose a lot of mineral salts with our output.

They have all sorts of tablets for athletes that replenish your mineral salts, they work well for us...maybe?

If not I use a homemade lemonaide that is just freshly squeezed lemons, a touch of salt, honey or sugar (or the fake stuff), chopped mint leaves and lots of water...it does a good job on me.

The osteopath is a great idea, they sometimes have ideas that we never think of...also (and I know that I may sound dumb here but...) Chinese medicine....I used to go to this herbologist 2xs/yr...he would check pulses, touch different extremities and my tummy and perscribe teas (they stunk but...) and I seemed to feel better (could have been psycosomatic) but I felt better in balance in my body.

Right now I see an Ethiopath (sort of the natural child of a chiro and an osteo)...he does wonders and has essentially unblocked my pelvis and reduced the nerve pain in my right leg/side by about 80%...I was dragging it behind me quite a bit and could barely turn over in bed or get up off of a chair or sofa...now I am much more agile and suffer a lot less. (I also take 1000mg of naproxen daily)....Whatever can get me through the night.

I am happy to hear about your pouch cooperating better...every little bit helps.

Sharon

ps. What is 'stink eye'?

 

Last edited by skn69

If you think you're not getting adequately hydrated with just water, an oral rehydration solution may work better. The magic is in the bit of glucose, which seem to have a substantial effect on absorption. Folks here like to also add the usual salts (of the sort that someone with cholera despeately needs), but I'm not sure that the salts make a difference unles you've got true diarrhea.

 

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