Hopkins tomorrow
episodic burning of hands and feet. They burn often without being red.
No swelling is seen either.
yrica, cymbalta and amitripitline started
local derm also gave me cytotek to try when I was in a great amount of pain. The Cytotek seems to be helping me.
Anyone else taking Cytotek?
Please keep me posted on your visit to Hopkins; they are at least aware of EM. When I was going to the pain center they had recently seen 2 others with EM.
Where are you going at Hopkins? I started with neurologist, vascular specialist and then pain center. Good luck!
I am going to see a dermatologist named Grant Anhart. He trained my dermatologist.
I hear he has seen this before.
LJ said:
Where are you going at Hopkins? I started with neurologist, vascular specialist and then pain center. Good luck!
Please feel free to mention my name-I'm in the system! The neurologist diagnosed after several years of dead end streets. While going to the pain center a woman from PA came in and then a woman from Canada w/EM. Unfortunately the treatments offered (Lidocane IV every 6 weeks) did not bring long term relief and a spinal stim was not something I was willing to do; just seemed that it would have added another level of stress to my stressed out body. I am currently getting a weekly Procaine IV at my GP along with Midodrine cream; all helpful. Good luck and let me know how it goes.
Leslie
Leslie, What is your last name?
Jacoby; saw Drs Dash, Ratchford (SP?) and Williams
This doctor has heard of EM but says I don’t have it.
Having a hard time believing him.
He is referring me to the peripheral nerve center.
Good luck with that; did the nerve plugs and had no signs of peripheral neuropathy; Dr Dash (http://www.hopkinsmedicine.org/profiles/results/directory/profile/0020809/paul-dash) came up with diagnosis on my first visit to him after several years of frustration with my neurologist. Hopefully you can find the answers you so desperately need. Please be in touch if you need any help getting through Hopkins system. They are very good at doing things as long as they have a procedure but unfortunately don't have one for EM. I'm thinking of you.
Hi, thank you! It says he is a cognitive specialist ??
I also had all of the skin biopsies and conduction studies.
All normal.
I sort of went into the Hopkins thing a bit differently than you; didn't have a referral from a DR. I called in as a patient to get an appointment and had all my records sent to Hopkins; they call you back and tell you the path they want to try first. I went to a spine specialist first off then was referred to Dr. Dash. He sent me to the vascular specialist and then to the pain center. A long, twisted path.
Today’s doctor referred me in that manor to see the neurology group. They review everything and will get back to me
LJ said:
I sort of went into the Hopkins thing a bit differently than you; didn’t have a referral from a DR. I called in as a patient to get an appointment and had all my records sent to Hopkins; they call you back and tell you the path they want to try first. I went to a spine specialist first off then was referred to Dr. Dash. He sent me to the vascular specialist and then to the pain center. A long, twisted path.
Hi, Today’s doctor referred me to the Neurology group in that same manor.
They will review everything and get back to me.
Good luck; keep posting!
@LJ
I have a few questions.
1. Lidocaine IVs every 6 weeks were ineffective for you, but Procaine IVs every week are effective? Is that correct?
2. Would you say the Lidocaine was wholly ineffective or infective because the 6 week interval was too long? Did the Lidocaine provide any benefit?
3. With regard to the helpfulness of the Procaine IV, does it stop flares from occurring, reduce the pain and sensation of a flare, or both?
LJ said:Hi Leslie,
I am wondering who I should see next? These doctors are all in network with my insurance.
They are reviewing my case for the neurology clinic, but I wonder if I should try to sneak in an appt with the vascular specialist before that? Hopkins only lets you make one appt at a time.
I don't think I will get into the Neurology clinic before July.
I have an appt with a derm who has seen EM before ,but I don't know if that will really help me?
Just FYI - my symptoms are redness and burning but no swelling.
I have started on a vasodilator and it has helped very much. I wonder if my issue is something else.
Who was most helpful to you and what was their specialty?
Thanks!!
Jacoby; saw Drs Dash, Ratchford (SP?) and Williams
On Lidocaine- I did get some relief from the Lidocaine but not long lasting. Hopkins felt that I should stay well enough on 6 week intervals or it wasn't worth doing. It was a real process; no food, couldn't drive and had to have a saline drip for 45 minutes at the same time. I went to my GP and asked for help; he was surprised that they thought Lidocaine would be that long lasting and mentioned that he has been doing Procaine IV pushes in his office for pain management. I do go once a week; no prep, restrictions or saline drip. I started using Midodrine .2% as well as some herbal meds (butterbur and Inflamaway) my GP suggested at the same time so it is difficult for me to say what is working on each symptom. My guess is the Midodrine is helpful for redness and swelling (AM walking is much easier) and the Procaine is helping with pain. I hope that helps and answered your questions.
What type of Doctor should I see next?
I’m wondering if I should go to a derm familiar with EM or maybe one of the docs you saw?
Dear Amy; don't know if you can jump the queue at Hopkins although they might call after they review your case and get you in earlier (at least they did with me). Seeing the head of the vascular department was not helpful for me; She was very nice but didn't have any ideas for helping and sent me on the pain center. Midodrine might be the answer for redness and burning; it does help. Can you get your dermatologist to write you and Rx for it? My GP has given me the most relief sorry to say but we take it where we can get it. Most everything isn't covered by my insurance (IV and Midodrine) but it works out to be the same $ as what my co-pay was for the lidocaine IV every 6 weeks at Hopkins and wasn't as effective. Hope you get in to Hopkins soon or if you want to see my GP he is near Columbia . http://www.crossroadsmd.com/crossroads/crossroads1.aspx
Warren Ross