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Topic Issue with MDS Go to previous topic Go to next topic Go to higher level

By sosad25 On 2015.06.29 11:54
My husband has had Parkinson's disease for 21 years. We have been regularly seeing one of the top Movement Disorder Specialists in our city for a number of years. At our last apt his PA mentioned that perhaps our primary care physician should take on Gregg's care. I said I did not think that was acceptable and she said no problem. Last week his Comtan prescription was running out and I had the pharmacy call for a refill and when I went to pick it up they told me the Doctors office refused to refill it and gave no explanation. I left a message for them on Saturday relaying my concern and asking for an explanation. The nurse just called me and said well "We released Gregg back to his primary care physician at your last appointment because there is nothing more we can do for him" There are no other medications, etc. to try and we specialize in movement disorders but when we reach all we can do with a patient we release them. I said my primary care physician did not feel that he should be the one to manage Gregg's Parkinson's. The nurse said then perhaps I should find a "regular neurologist" Now she just called back and said that if we want to come back to them then I will need a new referral from the primary care doctor.

Has anyone had a situation where you feel like your Doctor has "fired" you. I said it make me feel like you are giving up on him and they said no that they just can't really do anything for him. I guess I will have to find a regular neurologist.

Thanks in advance for your thoughts

By sosad25 On 2015.06.29 12:10
I just wanted to add how upsetting this situation is given the fact that my husband's Parkinson's pretty advanced and new issues are cropping up all the time. I don't feel it is right to expect us to start all over again with a new doctor.

Thank you

By LOHENGR1N On 2015.06.29 16:53
sosad25, Hi and welcome to the forum. Sorry you're having these problems. There are many mixed feelings around the P.D. community about Movement Disorder Specialists. Many deal with well, movement when other Parkinson's issues crop up they refer one to someone who specializes in that sphere, example sleep disorder clinics for problems sleeping. Because they MDS's don't deal with sleep they deal with movement. They are a sub-specialty in Neurology and started in the 1980's/90's. I know it is very upsetting to You and your husband and it doesn't speak well toward the MDS field. It is unfair as you said to expect you to start over with a new Doctor, however in this case you might be better off in doing so. Your primary care Doc may be able to recommend a "regular" Neurologist who is capable of the task. If the movement doc wants a referral that doesn't mean they will take you back it only means the will see him again to determine if they can help him and already dropping him the odds are the primary care doctor will be informed they can't help and will not take him on again. It is a sad state of medicine that this occurs and I'm sorry you ran headfirst into it. I hope this helps a bit. For the record I have a regular Neurologist who seems interested in my whole experience in P.D. not just movement. I've been going to Him for 29years now. Many here have MDS's and swear by them and that's okay it's their choice. I'm sorry for your distress and hope you find a good resolution to your problem. Again welcome to the Forum.

By lurkingforacure On 2015.06.29 21:05
I am so sorry and shocked to read this and would feel the same way. How difficult for you and your husband, after all these years. I would almost be tempted to file a complaint with the state medical board. This sounds like patient abandonment at a very critical time in his care. Not that I would go back to this doctor, because having told you they don't think they can do anything for him, they won't make much of an effort to try. But I would look into filing a complaint and then moving on to a PD specialist.

Movement disorder specialists deal with many other chronic illnesses besides PD and I've always felt that PD is such a difficult illness that if we could get a PD specialist, we would. If you can find a neurologist who specializes in PD, perhaps he/she would be a better fit for you and your husband, in more ways than one:)

By sosad25 On 2015.06.30 12:19
Thank you both for your thoughtful responses. I now understand the situation better. Prior I did not realize that the MDS was not going to see us through. I realize now that it is time to fine a "regular neurologist" hopefully specializing in Parkinson's for the rest the this journey. I am starting that search immediately.

By SparkysGal On 2015.06.30 15:21
Wow, I know how frustrating this all is. We have had to find new Neurologists and Primary Care Physicians due to relocation. We have been in our current location for 10 years and have had the same Neurologist but we are on our 3rd Primary Care Physician. 1st one retired without warning, and the 2nd quit her practice, again without warning. The other physicians in the group would not take new patients. Sigh. It's so hard to locate then get up to speed with a new doctor. You and your husband are in my prayers and I am hopeful that you will find the perfect neurologist to meet your ever changing needs.


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