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Old 07-24-2014, 12:15 AM
Wolbachc Wolbachc is offline
Junior Member
 
Join Date: Apr 2014
Posts: 40
10 yr Member
Wolbachc Wolbachc is offline
Junior Member
 
Join Date: Apr 2014
Posts: 40
10 yr Member
Default New Member to club I probably became a member of today

Reposted per suggestion to aid in reader visibility. Hope this helps.

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 were 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/cerbical 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.
Wolbachc is offline