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JoJoTheGemGirl
Sex: F
Data Quality: 0 stars
MS: 14 yrs
Sensation: Moderate
Overall: Mild
Cognition: moderate
Vision: mild
Speech: mild
Swallowing: mild
Upper limb: none
Walking: moderate

JoJoTheGemGirl

Female, 59 years
Grants Pass, OR

Primary condition
MS
First symptom
Diagnosis
?
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About JoJoTheGemGirl

I spend my time trying to enjoy my life and ignore numbess, pain, etc. the best I can. I do not have a dx of MS because everything else has not yet been ruled out-and still have long waits ahead of me (& lots of money to pay where insurance falls short) for tests I am scheduled and waiting for. My sister was dx'd MS years ago (lives in a big city with more doctors) - and medicated - and still she is just one step behind in same symptoms I have accumulated over years. I went numb before her-then she went numb-I have bowel problems-she got bowel probs, etc. Wanting to know if it is WORTH it!@

My mother started my life by taking fertility pills in 1955 and taking thalidomide for her morning sickness (I have internal birthdefects such as 1 kidney, 2 uteruses, no appendics or tonsils (from birth)) and my parents took my sister - and me before I was born - uranium hunting in the desert after the atomic bomb tests in 1955.  I was always skinny and when I reached puberty I had extreme "cramps" during menstruation.  Only to find out at the University of Washington that I has a "spare" uteruses simply draining into a cavity of my body.  They fixed that by creating a "canal" to my uteruses.  They did other tests and found some other internal "defects".  I had been diagnosed in my 20's with meningitis - and had migranes - I had a child after miscarraiges who was 9 weeks premature - I saw a LOT of doctors until I hit my 30s.  At that point I decided that basically they knew nothing more and were not helping me, so I stopped seeing them and began to take my health into my own hands by eating healthy and excercizing.

 I am now in my early fifties and have gone many years ignoring signs that some things may be "wrong" with me.  My sister was diagnosed with MS years ago - I knew then that I should get checked out also - but I thought I could just live with symptoms and ignore them.  That was around the time my first "numb" spot appeared on my temple.  And my "chronic" constipation got worse and toes began to tingle.  I decided to still ignore these and the last few years I have been trying to live my life my way.  I have taken up wood art that has done well.  I changed husbands, changed careers, and have been getting joy into my life. 

But, Finally this June I got to the point I could no longer ignore what was going on and ended up with an MRI showing several active lesions - pins and needles that do not go away - severe constipation - and still no real diagnosis.  The wait here in southern Oregon for ANY medical attention is months.  First I went to Valley immediate care - who misdiagnosed my severe pain and weekness as a bladder infection (my constipation had gotton so extreme (even with every laxitive and enema you can get over the counter) that it had backed up and gotton into my urnary system.  They treated me for that - then called back to tell me I had NOT had an infection!  It took me a month to see a regular doctor, another 1 1/2 months for an MRI, another month for doctor appointment regarding MRI, another 2 months for neurologist - and here is where I sit - having to wait another month and a half for nerve conductivity tests and after a week still not scheduled for spinal tap.  I am taking vicadin now - and that takes the edge off a bit and it is easier to not think about pain.  I am taking 2 medications to keep constipation under control and they are not doing very well - I eat right and drink LOTS of fluids - excercise daily - hold down an active job - - -

So I actually STILL do not have a diagnosis - and am disgusted and discouraged with the time and money it takes to get one.  I have joined this website in an effort to decide whether it is even WORTH it!  Why not simply wait untill something else goes wrong?  My pins and needles have creeped up my limbs and across my face to the point where only the trunk of my body is left unaffected anyway!  I read that it should go away in 12 weeks if it is going to - it has been 5 months now - - - -   I see how my sister is fairing - she lives in the large city of Portland Oregon and recieved a diagnosis in much better time - her symptoms are pretty much the same as mine - something I did not even know until recently when I finally broke down and told her what I was going thru!  It seems she is getting worse at about the same rate I am even WITH her medications!  MY medications have simply been a healthy lifestyle.  WHAT IS THAT TELLING ME?  am i missing something here?

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Member since: Oct 14, 2008
Last Login Dec 31, 2009