On the 5th Sept I had an MRI blood tests and visual evoked potential tests. By 8th Sept I was feeling very unwell. To cut a long story short by the 19th Sept I was at a reumatologist because my blood ESR was 50 and I was in agony. I had pain in my muscles and joints from my neck down to my knees. Couldn't dress myself shower or use the toilet.
The reumatologist gave me a steroid injection which made a lot of difference after a few days. He spoke to one of my neuros I think he was trying to work out if it's all part of the same problem.
Last Friday I saw one of my neuros who said that most of the tests I had in Sept had come back negative apart from the Lyme test. But she also said I have Myelitis as a working dx.
Yesterday I saw my second neuro who said that I may have Sjorgrens and if my Lyme test comes back positive from the other lab they've sent it to then he wants to do another lumbar puncture!
I just think that nobody knows what I've got after 10 months of tests and I'm wondering if it would be a good idea to ask for a second or is it third opinion. I'm really fed up and confused and your advice would be greatly appreciated.
I went to Cleveland Clinic for my 2nd opinion, where they diagnosed me with small fiber neuropathy. But, I was in a “good phase” of my illness here I had some reflexes! My neurologist dismissed thir diagnosis because he had seen no reflexes during some of my IVzig hospital visits. Now, he doesn’t know hat to do. I get SuVIg every 6-8 weeks when the pain gets o bad I can’t stand it. Get as much ino as you can!
......A lumbar puncture should be done be-cause the protein level of the spinal fluid will go up due to the inflammation at the radicular level. If you have this increase you are more likely to respond to treatment. People with normal CSF protein are a bit of a worry because they may have CIDP or may have purely axonal loss and so not respond to treatment..... ingroup newsletter #34 page 2-7
Sorry to hear about your pain, truley hope you feel better soon. Yes second, third and forth is needed. My wife shelley has a great internal medicine doctor as her prymary. the first time we meet her she said the even though Doctors present them selves as "Knowing All" they really are as lost as the rest of us regarding may issues and most are only guessing. She even siad somrtimes it is onlt a shot in the dark and that sometimes they get lucky.
Have you tried a University teaching hospital, most have good nueros on staff, or even the Mayo Clinic if possible. I have become very leary with Doctors, especially regarding CIDP, most have no idea what it is. I get a bad feeling when we meeet a new Doctor and I have to explain what CIDP is.
Sorry to hear about all of your frustrations Chrissy! I went to Cleveland Clinic for my 2nd opinion. I saw a neuro by the name of Jinny O. Tavee, I love her dearly, she is an amazing doctor!! I honestly believe you are entitled to a 3rd, 4th or even 5th opinion if need be. It's your body and your life, please don't stop until you get the answers you need and deserve. Please keep us updated on what you find out, I will keep you in my prayers. ~Blessings, Charolette