moving back to San Jose

    • Anonymous
      December 20, 2009 at 2:29 pm

      I spent my first 29 years in San Jose california. My parents still live there as does my inlaws. My mother and father have invited me and my family to come back and live with them. i think that it is best. I will be closer to family, UCSF and Stanford and they could use our help just as much as I need them. It will be symbiotic. I had to drop out of college ( because Of the illness) 1 semester before my BA at San jose state so I could go back and right that wrong. I will have to surender my keys to my house to the bank and leave behind the job I love but its getting too difficult to do anyway. My husband can transfer his job so there will be no lapse in my health insurance. I have to get out of vegas. with the rheumatology, I am too sun sensative. Henderson ( the town next to vegas where I live) was once a mecca of chemical industry. just down the street from me is land that is too toxic to get building permits on with out a clean up. I wouldnt trust my dogs life in the hands of these doctors here also.

      does anyone know of a good neuro in the bay area. Obviously I will travel if need be.

    • Anonymous
      December 20, 2009 at 6:39 pm

      Shouldn’t you plan on staying with Dr. Sahagian? I think that is your best bet. You’ve FINALLY found a neuro that is willing to listen to you. I think it should be a LOOOOONG time before you consider switching.

      Can’t you attempt to rent out your home or sell it before walking away? If you cannot then ask the bank about doing a Deed in Lieu of Foreclosure. It’s better for your credit.

      Sometimes a life change is good for the soul.


    • Anonymous
      December 22, 2009 at 3:37 pm


      I agree with Kelly if you can stay with that new doctor that Ken suggested I would since he seems the only one to really give you some hope and seems interested in your case.
      as for th house in Vegas, if you can’t rent, or sell the best bet is to do either a deed in lieu of foreclosure or a short sale. You will have to fill out a packet and write a hardship letter for both and you will need to talk about you illness and it being the reason you need to move home with family. dont hold anythig back about how much help you need from your family being that you are so ill.
      with a deed in lieu of foreclosure they just take back you house immediately after its approved and you walk away. it is much better for your credit than a foreclosure but you will still take a hit on your credit score. with a short sale you will be selling your house for less thn you owe. if approved by the bank they will usually forgive thedifference between wht you owe and what it sold for. but that is up to the bank. lewt me know if you have any questions about it.
      Rhonda (ryan’s mom)

    • Anonymous
      December 23, 2009 at 1:25 am

      thats ok I am driving 5 hours each way now (it takes me 8 actually). I can fly in from san jose. it wont be for another 6 months. hopfully by then it will only be check ups and follow ups to see how treatment is going. In other words no I am not letting this neuro go that easy.
      Well the EMG was normal so it cant possibly be cidp with the level of weakness I have. He is looking at vasculitis and amyloidosis in the skin biopsy. I know enough not to look anything else up. I dont even want to know and dont even tell me. all I know is that this man is on the job. he is perplexed that I show objective peripheral and central in the past but I am complaining of weakness now and show evidence of neither currently. to top it off my possitive ssb just went negative. i am happy but now I am starting a low negative titer in anti-smooth muscle and anti dna. teter toter titer It is like my immune system is this bed of nails, poking everything and penetrating nothing. My immunesystem has

      So A+B does not always=C. in other words GBS+chronic ascending numbness and weakness afterward is not always cidp. WE have learned a lesson. I will be sure to check in and let you guys know when all of this is figured out. I hope my posts will help someone in the future. to quote diagnonsense “sorry for mucking up your site” or something to that effect. thank you for all your help, constructive critism, advice, endorsments etc. good luck and god bless

    • Anonymous
      December 23, 2009 at 9:57 am

      The good thing about all of this is that you know it’s something autoimmune because the plasmapheresis helped you. You are one step ahead of others.

      I hope you do get back with us. I would really like to know what you have that emulates CIDP so much.


    • Anonymous
      December 24, 2009 at 9:16 am

      I would also like to know what you find out. You described my symptoms as if you were in my body.
      All I get from the doctors is “we do not know”
      I have idiopathic neuropathy, maybe transverse mylenitis but we can’t find it on the MRI’s of the spine. I just had a cervical MRI and another EMG of my right leg and arm and the nurse told me yesterday the doctor sees nothing notable.
      I am sustained on medication. Lyrica for nerve pain, Provigil for fatigue, Baclofen for tremors and leg pain, plus synthroid, BP and cholesterol meds.
      You take my Lyrica and Provigil away and I would not be able to get out of bed! Without my walker, I would fall down.
      I think there is a new/different disease out there that the doctors just need to name! It is kinda Fibromyalgia-like, kinda CIDP-like, kinda MS-like, kinda Parkinson’s-like but has no name.
      I am so frustrated with all the disabling pain and suffering and no one knows what it is or even seems to realize how bad it really is…or cares!
      Sorry to be such a complainer!
      Hope everyone has the best Christmas possible and a New Year with lots of positive changes!
      Hugs to all,

    • Anonymous
      December 26, 2009 at 2:51 pm

      Hi Tara,

      Just wanted say THANKS! I have enjoyed listening to you and you have definately made me decide to get another opinion. Had a kidney infection
      a week before Christmas where I ended up in Urgent Care and was down
      for about 4 days. Oh well, sometimes I hate this (especially when I feel bad)
      but for some reason something is telling me I need more test.

      Ms. Judy