Dr. Conway update

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joeparz
Posts: 88
Joined: Tue Nov 26, 2013 10:09 pm

Dr. Conway update

Post by joeparz »

So he finally called me back and gave me an update.

He said he is not sure if i am entrapped or not, but there was a definite delay on my right side near the alcocks canal. He said he thinks the Potter MRI is a waste of time and that it rarely shows anything. I told him i would do it anyway just in case, since my insurance will cover it since it can be done right here in Boston. There is associate of Dr.Potter that works right here at MGH. I thought that was who i saw when i got my 3T but i was wrong.

He said next step is injections and that it's about a 50/50 chance. He said he has a bunch of patients that saw great results, some for months, some for years, and some with no response at all. He also said it is extremely rare to get permanently worse. And he has never seen anyone who has.

Not really sure what to think of all this. My pain level is starting to go up. Afraid to try injections but feel i may have no choice.

I have a ton of other symptoms besides PNE symptoms, mostly correlating with Lyme so i am seeing a lyme specialist. I went over my last lyme results and i have 2 out of 10 antibodies for lyme, you need 5 for a clinical diagnosis, but there is much debate about that because a lot of doctors believe even just one antibody can be an indication of lyme. Especially if you have symptoms. Also the 2 antibodies i have are lyme specific, which means they only form in your body if you have been exposed to Lyme.

So we will see where that takes me, i had PN symptoms for a long time, and was able to live my life. Now i have debilitating anxiety and widespread pain all over my body and joints. I feel like i am falling apart.

Hoping the Lyme doctor can at least treat me for it just in case. If not injections it is.
Patty
Posts: 158
Joined: Sun Feb 16, 2014 2:14 pm

Re: Dr. Conway update

Post by Patty »

Joe where did he suggest he get your injections and what kind? Are you taking lyrica?
joeparz
Posts: 88
Joined: Tue Nov 26, 2013 10:09 pm

Re: Dr. Conway update

Post by joeparz »

I am not taking anything as the pain is not bad enough yet. I still can't sit really, and i just try to avoid all activities that aggravate it. It's the bladder issues and sexual dysfunction that are what's driving me mad.

The injections are done in boston at Beth israel.
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