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    • #14326
      Mikael knoth
      Participant

      Well i spent a few days in boston and had an appointment with dr. Cudkowicz , i was very impressed with her not only as a doctor but as a person. would highly recommend her. now for the visit. in her opinion she did not think another emg was necessary , i was happy because i have had so many i think i could do it to myself. She did say point blank you don’t have als, which i was happy about, she said the saliva problem she thought was an overproduction of saliva rather than any kind of bulbar swallowing issue, she commented that my speech was normal . she did say that she thought i had moderate small fiber neuropathy and ordered a skin punch biopsy . She said that we will have our next appt by phone when the results come back. i want to thank everyone on here for supporting and advising me, you did it with compassion and understanding. its been a terrible three years. i have had a very bad experience on another forum. again thank you and your are all in my thoughts and prayers.

      mikael

    • #14329
      Dagmar Munn
      Keymaster

      Bravo Mikael – – on your “good news, bad news” report. It is so good you found a doctor whom you trust and have good communication with… but also an answer. Now you can go forward pursuing the best course for your body. We wish you smooth roads ahead! 🙂

    • #14333
      Douglas K Powell
      Participant

      One of my neurologists is Dr. Barry who is part of the leadership team of the ALS Clinic of Mass. General.

      He first diagnosed me with lower motor neuron disease. I have been seeing him for about a year now.  I like Dr. Barry very much. My wife and I find him easy to speak with. He is a good listener and we like the fact that he never rushes us and gives us all the time we need. He is compassionate, very knowledgeable and is on the cutting edge of clinical trials and technologies related to ALS and other neurological diseases.

      I see him on Tuesdays which is a designated ALS clinic day. Patients at the clinic have access to a wide range of hospital resources; physical therapists, nutritionists, respiratory therapists, occupational therapists, nurses, etc.

      He keeps me current of promising clinical trials and is open to alternative (but safe) therapies.

      I have a high regard for the Neurology Department of Mass. General.

    • #14338
      Jonathan L Maddock
      Participant

      Two thumbs up for MGH . I am seen by Dr. Katie Nicholson and a host of others in a support team that is super knowledgeable. I feel confident that I am in the best place possible for the treatment of ALS.

    • #14414
      Mikael knoth
      Participant

      I know that this is not als but i thought i would post the results , well the biopsy came back showing severe sensory and autonomic axonopathy , have a video appt with the good dr at mgh to see where we go from here. thank you to everyone on this forum for their support.

      mikael

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