New Neuro for Nate

    • Anonymous
      April 30, 2007 at 4:41 pm

      We just got back from the first visit with Nate’s new Neuro. He is Dr. Patrick Delaney in San Diego.
      We both really liked him. He seemed very interested and very thorough.
      He said nate was taking way too little Neurontin and he upped the dosage quite a bit.
      We gave him the history of what happened before nate got GBS and he was very suspicious of the flu shot nate got 2 weeks before getting sick.
      He checked nate all over and told us some interesting things I have never heard before.
      He says that with the variants nate has, its more likely that the flu shot did it.
      He says flu shot GBS is diferent than the usual infectious process GBS.
      There are what he termed “weird” variants with flu shot GBS.
      I have never read that before.
      He says nate has nerve compression in his neck and hands.
      Being bedridden for a long period of time would do that. He says he thinks it is also the cause of his monster headaches.
      Also being immobile causes contractures, resulting in joint deformity like nate has with his right ankle, and nerve compression.
      He is going to have nate tested for nerve conduction since he has not had any since he was diagnosed 16 mos ago.
      Nate still has lots of numbness going on and he is interested in seeing whats going on with that.
      He is also going to see if he can get nate into a pain management program.
      I have not read anything that stated that there is a difference between GBS caused by different things.
      Have any of your Neuro’s told you about any differences in flu shot GBS or other causes?
      This is all new to me

    • April 30, 2007 at 4:47 pm

      It seems like every day there is something new with aidp/cidp. Please keep us posted w/any new info aso that we can learn as well. I hope you are happy with Nate’s new doctor and I know he will help Nate! Dawn Kevie’s mom

    • Anonymous
      April 30, 2007 at 9:58 pm

      I wish that someone would do a detailed questionaire on everyone on this board. I am guessing that it has not been done with hundreds of people. I would ask and compare Blood types, family history, stress level, treatments and results, pain and fatigue levels, and every question under the sun that might possibly give us some answers. I am optomistic enough to think that the answer might be staring us in the face and the doctors just haven’t looked at the patterns – such as the symptoms varying from the cause of GBS.

    • Anonymous
      April 30, 2007 at 10:38 pm

      [B]Hi Trudy,

      I am glad that he up the dosage of Neurontin for Nate, that could be a tremdous help in the pain department. He will feel sleepy until the higher dosage levels out for him.

      Frank and I were never told that there is a difference in a flu shot GBS compared to other things that can cause GBS/CIDP. Frank had 2 Neuros and the one Neuro specialized in GBS/CIDP. I like to know where he is getting this theory, it would be an interesting read for all of the people here that developed GBS as a result of the flu vaccine. GBS is developed in people from other vaccines so would that mean all of GBS cases from a vaccine are different? I highly doubt it.The end result is the same for all patients, myelin eaten away and some have axonal damage which is the core of the nerve.

      Please ask him if he would give you the source of his info so we can read it.[/B]

    • Anonymous
      May 1, 2007 at 2:25 am

      Donna, what he was saying is that he notices different symptoms different places in the body with flu shot GBS than other causes of it.
      Nate will be going in for Nerve Conduction Studies as soon as we get the appointment. They already got approval from his insurance, which surprises me.
      After we see whats going on with that, I will be talking to the doc about what he said. I have a lot of questions.
      He seemed to really know what he was talking about when he was talking about the differences.
      He asked Nate things that were totally different than Nate’s old Neuro. He had nate doing things with his hands, arms, toes, and fingers. He was checking nerves with his own hands, checking the reflexes in his joints, all kinds of things.
      His old neuro never did anything like that. He just kept telling nate “its a long road” and cancelling appointments.
      This doc is young, probably under 30. He seems very smart.
      He seems to know a lot about GBS.
      I am so glad our primary care doc found him. He’s a good judge of a good doctor.
      Trudy, natesmom

    • Anonymous
      May 1, 2007 at 6:02 am

      I am so glad you have found a neuro you are happy with, and one who seems to know what he is talking about too. i think if you have confidence in your care givers you have faith you will get better.

      [QUOTE]He had nate doing things with his hands, arms, toes, and fingers. He was checking nerves with his own hands, checking the reflexes in his joints, all kinds of things.

      Every day while I was in ICU my doctor would measure my movement and strength and resistance in my arms, legs, hands, toes, neck, shoulders etc. He would try to make me smile, clench my teeth, look up down etc to see if my facial nerves had returned. Often he would have registrars or students etc and would be rating me 1-5. My daughter has spina bifida and has similar tests to measure her strength so I knew exactly what they were doing / what the ratings meant.

    • Anonymous
      May 1, 2007 at 2:44 pm

      His office already called Nate and is setting up the Nerve Conduction Studies and UCSD called me this morning and got us an appointment for the Pain Clinic May 22.
      That Dr works fast. I feel very encouraged, so does Nate.
      Trudy, natesmom

    • Anonymous
      May 1, 2007 at 11:33 pm

      Trudy I am glad to hear that you guys have found a Neuro. that your happy with and seems to be on top of things. You and Nate are in my prayers.