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Old 07-23-2014, 11:17 PM #1
Wolbachc Wolbachc is offline
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Default Probably became a new member to your Club today

Hope there is no offense to my title. This has been quite the journey and quite frankly I am weary. Today my appointment with an ms specialist said mri of brain looks like MS. Will have to complete evoked potentials, spinal tap and mri of thoracic spine for final diagnosis-or off to some other specialist I'm sure-if things get more confusing. I have a weird situation that I just go from one specialist to another and noone looks at the whole picture. When I ask them to read my log of events, they want me to embellish and then before I know it they are overwhelmed with the complexity and never hear to entire story. I am a nurse and have made documents, spreadsheets, copies of all records but it seems that everyone has their specialty that they focus on and lose site of the entire situation. There really is something wrong in our healthcare system. I started out about 2 years ago with burning soles of feet, swelling/pain/limping of each foot at different times with mri showing contusion. No injury that caused the situation. 11/13 after walking on the swollen/painful right foot, ruptured right peroneal tendon. Tendon repaired surgically 12/13. Intense right lower lateral leg pain with numbess along with increasing numbness of right foot. Sent for spinal mri 1/14-mildly herniated L4, L5, S1, S2. Leg pain then attributed to back and underwent 3 spinal epidurals for leg pain (never had back pain). Between 2nd/3rd epidural, big toe became totally numb and cannot extend toe. Nerve conduction studies show axonal and demyelinating features. Sent to 2 different neurologist and 2 neurosurgeons who say spinal nerves not compressed no surgery needed. Neurologist took their good old time and did basically no real work-up. There is more but I will get to the point. In June when I realized things are worse, I have more difficulty walking because right foot is not working and right lateral leg pain really bad and now I can no longer work but have basically not worked since 12/13, I got myself to Cornell to a peripheral neuropathy specialist. His diagnosis was small fiber neuropathy related to neurotoxic medications-cipro, macrodantin and statins with no treatment options. I also had a carnitine deficiency and was started on supplements. Diagnosis #3 was sciatic neuropathy of the right peroneal branch probably related to popliteal block done to repair tendon rupture with no treatment options. Went to new Internist who orders brain/cerbival mri about 2 weeks ago who showed numerous brain lesions along with evidence of demyelination with same type of findings in the cervical area. Do I think I have quinolone toxicity-i am pretty sure-can trace symptoms back to 2 months after taking. Again, no treatment for this in Western medicine. I am going to start glutathione infusions with an alternative doctor next week. I have an appointment at John Hopkins to get the probably damaged peroneal nerve evaluated and after reviewing my records, gave me an appointment writing "good case" and give her an appointment. If I wasn't in so much pain from the right leg and could walk acceptably, I would just give up. Any thoughts on my case would be appreciated. Sorry we are all in this club. I realize there are worse clubs to qualify for and I am grateful for the blessings I have. But, I am weary and tired. I know, I know, that is an ms symptom lol.
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Old 07-23-2014, 11:55 PM #2
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can you break up the text of your post into several paragraphs? I'd read it, but my eyes keep getting lost in the block of text. Some of us here have vision issues that can make it hard to read large blocks of text like that.
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Old 07-24-2014, 12:04 AM #3
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Sorry that you might be a member of this club. But this club does have some pretty terrific members. We just have an awful disease. I was an RN also, had to quit 15 years ago and have forgotten a lot of it. But it was wonderful while it lasted. I was in cardiac nursing
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Old 07-25-2014, 01:39 PM #4
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Welcome to the club, Wolbach..
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Old 07-26-2014, 08:33 AM #5
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It is weird how difficult it is to become a member of our club, isn't it?
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Old 07-26-2014, 04:48 PM #6
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try not to get too overwhelmed (easy to say, not easy to do).
take one thing (dr visit, test etc) and one day at a time.

having a plan of action can help give you back some control of your situation.
the more power you can create for yourself the better you might feel.

there's a lot of knowledgeable and supportive people here. welcome to NT.
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