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in limbo....


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Old 12-13-2010, 06:10 PM   #1
barelracer
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in limbo....

Hello, I am a 38 yr old widowed mother of one son, who was once, prior to 8 months ago, a very active healthy individual. I have had weird moments on and off for a few years, insomnia, headaches,severe fatique, pain in joints with no arthritis, had cts for possible appendix problems, gall bladder tests several times,and what was diagnosed as gout in my right foot, but never slowed down, and resisted seeing my doctor unless I was in excruciating pain.

In april, I was very uncomfortable in my lower abdomin(sp), and discovered I had POP (pelvic organ prolapse, of the bladder and uterus) and interstitial cystitis. thats how it all started anyway...having no insurance, nothing could be done, and 2 weeks later, the joint pain started again, hands, wrists, and hips at first. Found a way to cover some medical tests, and had rounds and rounds of bloodwork and xrays! results: high MCH, high CRP, high ALT/AST, positive ANA with nucleolar pattern, occasional low RBC. CT showed granuloma's in left lung, mild scoliosis, and degenerative arthritis in my back(mild). GI dr found "nothing remarkable", gyno gave me a hysterectomy, and rhumatologists#1 said I had depression, #2 said fibromyalgia (the joint pain was worse, and spread to mucsles) a month after onset I started having multiple fevers everyday, 99 to 102, mostly at night, no one knows why these happen, though they are worse after activity. I quit working in June, it got that bad with pain, and Rumatologist #2 sent me to Phys Ther., where they found what they suspected was nerve damage, and lack of reflexes, both arms. In Sept., I suffered the WORST headache EVER, with vomiting, no control of my limbs, couldnt talk, couldnt see...but did not go to E.R.,as the doctors already made me feel like I was a hypochondriac...but found that now my memory is SHOT, I sometimes have trouble comprehending what is being said to me, and struggle sometimes to "find the words", as well as mood swings which are alarming to say the least!Also since then, if I walk to much, or have a fever, my right leg will hurt at the hip, and stop working ..I have muscle weakness in all 4 limbs, mostly arms,and I cant feel the current of the electric fence (no shocks), while my friends get knocked on they're tucus's by it! I still have headaches, all the time, "things" in my vision(optomitrist says its from my eyes becoming "inflammed") and when I followed up with my PCP, (he's suspected an autoimmune disorder the whole time) he ordered an MRI and EEG, which ultimatly showed a lacunar infarct and possible "demylinating"(sp) disease(EEG was normal)...he quickly referred me to a neurologist, who I saw today. She says she actually read the EEG, and proceeded to tell my boyfriend ALL about it(she didnt talk to me directly at all!) until I interupted her and asked about the lacunar stroke thing, which she replied she "could not help me with", couldnt tell me why, or if I may have another, etc., nothing!! AND stated that there were NO OTHER tests to help me!(though she did say she thought my stroke was "silent" , my pcp thinks the atack I had that night described above was the stroke.) she then suggested I go back to my doctor for treatment, as she "would hate to give anyone a MS dx". Isnt a nuerologists supposed to help with these exact problems? I have no idea what is wrong, my PCP suggested MS or Lupus, but the "specialists arent helping me at all...even with the tests results being "not normal"...now my left ankle stops working to!!

 
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Old 12-13-2010, 07:16 PM   #2
kiragrace
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Re: in limbo....

i was wondering if you were ever tested for lyme?

 
Old 12-13-2010, 10:57 PM   #3
barelracer
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Re: in limbo....

yes, they tested for lyme a few months ago, but are repeating the test, as well as some others...

 
Old 12-14-2010, 04:08 AM   #4
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Re: in limbo....

barelracer,

I would suggest finding a different Neurologist that would be more willing to look further. Apparently, the neuro you saw was not helpful.
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Old 12-14-2010, 09:01 PM   #5
barelracer
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Re: in limbo....

she wasnt at all helpful...I am going to take a short break from new doc's for the holiday season I think...just a few more tests my pcp has ordered...to wore out to keep running around to different doc's every week, you know?

I am having trouble with all the meds I am on tho...it's hard to keep straight which ones too eat with, which ones not too, and all the different times to take them...thank you for your responses tho...does this sound like ms at all tho?

 
Old 12-14-2010, 09:43 PM   #6
MSJayhawk
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Re: in limbo....

You might check with your local pharmacist to assist you with your different meds. As meds can interact with harmful side effects, you need to get them organized.

Your PCP can order most of the tests you require for a diagnosis even before locating a new doctor. Check with the local chapter of the MS Association or Society for a referral to a neurologist who will work with you.
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Old 12-14-2010, 10:26 PM   #7
barelracer
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Re: in limbo....

thank you so much, I am going to look into a neuro that specializes in ms, because I know need treated...It just gets so frustrating...I am a 100mph person who is doing about 20mph now...and its hard!

 
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