New Doctor in the Detroit area
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May 7, 2009 at 12:06 pm
Does anyone have any experience or heard of anyone that has had any experience with the Neurology Department at Henry Ford Hospital in Detroit, Michigan or any of their other locations? I am so fed up with my doctor and now I am looking for a new one. My Neurologist will not prescribe any narcotics for pain, which I have had a lot of severe pain lately, so I asked yesterday if he could prescribe Xanax for my anxiety from all the pain, just .5 mg. The girl called today to tell me to go to my regular doctor for that prescription. I feel like I am living in hell with this doctor, I can not stand this pain any longer. Last night I was up until 3 a.m. and took 1/2 of a 10 mg of my husband’s percocet, which calmed the pain and I finally fell asleep. My stupid insurance company does not cover any pain management clinics in my area (can’t figure that out). This doc has got to go. Also, I was taking Topamax which was making me think weird and feeling very weak, their answer was keep taking it until I get use to it and then up the dose!! This morning I threw them out and went back on Neurontin. There should be a website that you can go to that you can rate doctors and tell your experience with them. You can rate appliances that you buy, you should be able to rate doctors. Any advice on a doctor would be appreciated.
Clare in Michigan -
May 7, 2009 at 12:29 pm
Hi Clare,
There is very good site for rating doctors. It is called [url]www.RateMDs.com[/url]
Laurel -
May 7, 2009 at 12:47 pm
Hi Clare,
I’ve heard good things about the Neurology department at U of M (Ann Arbor) from one of the other forum members (Jerimy). You may want to send him an e-mail requesting the information as I no longer have it. If you’re unable to reach him, let me know and I’ll give him a call.
I’m glad you were able to at least have a good night’s rest.
Take care,
Tina
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May 7, 2009 at 2:37 pm
We do not see doc Lewis, as we are in another state. However, he is on this board and well published, as well he is involved with many new studies. He was very kind and understanding at the symposium when I asked him questions about my son. Good Luck.
Dawn Kevies mom -
May 7, 2009 at 3:13 pm
Dr Richard Lewis is the dr to go to. He is out of Wayne State. Here’s his phone number: (313) 745-4275
Kelly
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May 7, 2009 at 3:50 pm
Unfortunately my insurance does not cover doctors at U of M. I will have to check if they cover doctors out of Wayne State. Thanks.
Clare in Michigan -
May 7, 2009 at 3:58 pm
Dr. Lewis is also not covered by my insurance. I have Aetna and they have to be in the network and his is not. I guess I have to just chose one from Henry Ford Hospital and pray he is the right one. Insurances can be such a pain.
Clare in Michigan -
May 7, 2009 at 7:55 pm
Hi Claire! I know it gets pretty darn frustrating when one doctor becomes your worst nightmare! I had the same experience last year and did switch over to new ones. I am so glad I did. I am relieved to finally have the ones I see now listening to me. Makes a big difference. I hope and pray you get lucky and get to see someone that will finally listen to you. I’ve been there and it’s hard trying to tell your doctor how bad off you are and they give you something that does not work. I too went back on Neurontin because the other stuff they gave me won’t worth a flip. But I am on other meds too that help because of my illness! Wished I didn’t have to take any pills at all. Before I got sickly, I barely even took aspirin let alone anything else. Now I feel like a medicine cabinet! Hugs! Praying something good comes your way!
Linda H -
May 7, 2009 at 11:34 pm
Hi Clare,
Dr. Lewis seemed like an AWESOME guy. I bet if you asked him to work something out regarding the out of network price, he would do it. Also, after a consult w/him he would probably work with the doc that is in network. Do you like your primary, perhaps correspondance between your pc and Dr. Lewis regarding a treatment plan could be an option. Good luck.
Dawn Kevies mom -
May 8, 2009 at 12:05 am
I would like to support what Dawn has said. Dr Lewis seemed really awesome at the Conference. I was must impressed with his approach that it is as a person that one has to consider these diseases–what impact it has on your life and how best to go from there to keep living life. Also, he was a strong advocate that pain is under recognized and needs to be managed in order to then deal with the rest of this. I did not hear anyone else that was a practically oriented nor as wise in life.
WithHope -
May 8, 2009 at 8:54 am
I think Dawn had a great idea. I think if you get in contact with Dr. Lewis he might be able to either see you & work with your PCP or refer you to someone in your network.
I did a quick Google search & found his email addy. I think you should send him an email ASAP or just call his office & leave a message. Here’s his addy:ralewis@med.wayne.edu
This is the link to the website I got it from: [url]http://www.med.wayne.edu/student_affairs/records_registration/electives/advisors.asp[/url]
Kelly
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May 8, 2009 at 9:51 am
How did you guys hear him, at a convention? I checked my insurance and he is not covered in network or out of network with Aetna. They do not cover him at all, which means I would have to pay everything out of pocket. I will send an email to him and see if he might refer someone from Henry Ford or somewhere else that is in my network. I don’t know why our insurance is so limited, it covers everything else. I get my infusion today, hope everyone has a great day today.
Clare in Michigan -
May 8, 2009 at 11:06 am
I called my insurance to double check about Dr. Lewis and he is in my network. I guess I had been looking under the wrong list of doctors for my network. I am going to make an appointment for the Novi office. Has anyone had to go to Harper Hospital and if you did where is the parking. Does he do testing in his office? I am so relieved to finally find someone that sounds really good. When I went to the website for the hospital that shows his name, it gives the story about the exec who went to so many doctors and could not find what was wrong with him and he finally went to Dr. Lewis and he found the problem just from his old blood work tests. Thanks for the referrals to him, will let you know how things work out.
Clare in Michigan:p -
May 8, 2009 at 12:06 pm
My mom used to work at Harper Hospital MANY MANY moons ago. They have a parking structure or valet parking, if I remember correctly. You might want to call their main number & ask where the best place to park is & if there is a parking fee. This is the phone number: (313) 745-8040
Or you could just ask when you call the dr’s office. I’m sure they’ll have some tips for you.
It might take awhile to get in to see Dr. Lewis – it’s usually a long wait to see a specialist. You can usually speed the process up if you have your PCP call him.
I had never heard of Dr. Lewis until people came back from the symposium talking about him. I Googled him & was impressed. I hope he lives up to the hype because CIDP’ers in MI really need a great neuro.
Good luck,
Kelly -
May 8, 2009 at 3:38 pm
Hey Claire! Hope you get lucky and get in soon and finally find a good doctor that will finally listen! Good luck and I will keep you in my prayers! Hugs
Linda H -
May 8, 2009 at 7:48 pm
Clare,
How we heard of him at the convention is that he was a guest speaker. He also is involved in many research projects and has published many articles and I think a book. I also wonder if he is the Lewis in Lewis Summner variant. Maybe if you utilize the web site Kelly gave you, you could write a from the heart letter begging for a quick appointment.
Dawn Kevies mom -
May 8, 2009 at 11:37 pm
Well, I won’t be going to Dr. Lewis. My home nurse use to work for him for six years and advised me to find someone else. I am going to go with Henry Ford Hospital. Will let you know what happens.
Clare in Michigan -
May 9, 2009 at 12:50 am
Did your home care nurse tell you why he/she would recommend someone else? Keep in mind that working for someone & being their patient are two totally different things.
My advice would be to shop around for a dr. There is nothing wrong with meeting several dr’s before deciding on which one you like the most. I would encourage you to try Dr. Lewis & see how the two of you mesh with each other. While it’s important to take other people’s advice it is ultimately you that has to do what is best for you.
Good luck,
Kelly -
May 9, 2009 at 1:06 am
Dawn,
Yes, Dr. Lewis at Wayne State is the Lewis in Lewis-Sumner syndrome.~MarkEns
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May 9, 2009 at 11:08 am
Yes, I realize that working for someone and being a patient is two different things, also some people’s personalities are not going to get along. I don’t mean to talk negative about the doctor. I think the biggest issue for me right now is that I know Henry Ford Hospital better as far as getting there and where everything is inside. They also have a pain management department which will help if I go through another episode of pain like I did. So far my pain has been relieved and I feel a whole lot better since I quite the Topamax and went back on Neurontin. My nurse says that maybe the increase in the dosage of my IVIG and increased amount of getting them is starting to help. I hope everyone is having a great day today. Happy Mothers Day to all the Moms for tomorrow:)
Clare in Michigan -
May 9, 2009 at 6:18 pm
Happy Mother’s Day Claire! Glad you are having a little less pain. I have tried all kinds of different meds for that neuropathy and Gabapentin is about the only drug that works for me. The rest of them just aren’t as effective. But I do have tylenol with codiene for breakthrough pain but not allowed to take it every single day. Only as needed and that is monitored. Meaning I get maybe 4 pills RX a month and that’s it. I keep a stash of it though! LOL! Two large bottles from where I had teeth pulled and ER visits for injuries. I save those suckers like they are gold! And when I need it I take it! But try not too unless I get really miserable then I have no choice.
When I injured my spine they even gave me Methodone. Still have a full bottle of that. I’m scared of that Methodone. Most of the time I take average 800 mgs Ibuprophen and that seems to help with the pain. Being a lupus patient though I take alot of pills everyday. Have no choice as they are the only way to treat my disease. Stinks taking 28 to 35 pills a day! I’m surprised my liver hasn’t blown out. Alot of Inflamatory Medications I have to take. All with side effects too!
Happy Mother’s Day Claire!
Linda H -
May 9, 2009 at 10:10 pm
Sorry to hear you have to take so many pills. My aunt has Lupus and is on a lot of pills. How much Gabapentin do you take? How far apart do you take it? I am starting back on it and I am trying to not take as much, I was up to 3200 mg/day with pain still coming. I should ask others how they take theirs. This autoimmune stuff is the pitts, but then I see others that are dying with cancer, losing their eyesight, losing their children at young ages, and I start to look at myself and start to appreciate what I have. Through all the pain I had I learned to appreciate the fact that I had hands and feet to feel pain, insurance to see a doctor and get meds, my husband is still working (even though he has been off work for 8 months due to a motorcycle accident that was not his fault and he almost died), I still have my husband and my daughter still has her daddy, we still have a house to live in, etc, etc. I thank God everyday for what I have and to focus on that. Although, some days it is hard to do that, I am thankful for this board and the people on it to share the good and bad days.
Hugs and prayers;) .
Clare in Michigan -
May 10, 2009 at 6:19 am
Hi Claire! I am right now taking less Gabapentin than you are. Only 1800mgs a day. I take one every 3 hours during and within 18 hours. I sleep pretty good at night now and my nerve damage really does not bother me until the mid evening hours Then I go nuts. First thing in the morning when I wake up and every single day starting at 3 until bedtime. My script though has me for 2400mgs a day. But I am sleeping at night missing 2 doses. Would probably be on a higher dose if I was not on so many anti inflamatories. I take plaquinel too and once stopped it because I didn’t see what it was doing. After a few months the pain kicked in my joints and I felt like a twisted pretzel. So now I stay on the plaquinel. I feel for your aunt that has this disease and hope she is doing well. I too had an aunt with it. It at times can be a hard disease to diagnose. For me it took several years. Doing only but nerve damage. I had the symptoms though but never heard of lupus before and was young when I started getting sick. I didn’t know my migraines were affliated with it and the rash I was getting, I thought it was my soap or washing powder. LOL! Then it dawned on me these symptoms somehow where related and I started keeping a diary of everyday events. Before I got sick I only took regular tylenol or aspirin for headaches and pain. Never really took much of that either. Each morning is the struggle swallowing those pills. Takes me a half hour just to swallow pills. I try to think like you think! That there is somebody 10 times worse than I am. During the day when I feel horrible I still get up and try to achieve something even if it’s only a small thing just to say I did something. But when I feel decent you can’t keep me home. I get out and do things. Shopping mostly but enjoy it while I can! Saw that lady on TV that had her face shot off by her husband and saw how beautful she was in the before photo. A for years she has had no face! She looks horrible right now because of the swelling but am so happy that medicine was at least able to give her a face. That story made me cry when I saw her! And when you see something like that you say to yourself that their are others in far worse situations than myself! Those accidents on motorcycles are nothing to play around with and I pray your husband gets better. My oldest brother was killed at the age of 19 by a motorcycle. It was the other drivers fault but it dosen’t matter who was at fault. Somebody that was so young is now gone because of it! I have met quite a few people that got injured too and some have permanent damage.
Hope you have a beautiful day today with lots of Love and Joy! Hugs
Linda H
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