Questions for Johns Hopkins Neuropathy Appt?

SparkleKid

Well-known member
I have an appointment with Johns Hopkins this Friday with a neuropathy specialist. Anybody have some questions you would like me to ask? If so reply back or pm me and I'll try to ask them if I have time.Also a question for some experienced people out there. I am scheduled for an EMG after my appointment. I'm thinking about asking to skip the emg. I think it's obvious that I don't have als. Is there any other useful information that can come from an EMG? Just wondering. This guy specializes in immune therapy so I hope he can help me.
 
I just had my morning appointment at JH. We discussed the emg set for a his afternoon. I said I didn't want to do the emg. He said you're probably worried about als right? I said well the fear is not as prominent now as I know the chances are small, but I have to admit yes It's still have it in the back of my head. He said I can tell you now you don't have als. I'm looking for other things on the emg but if you don't want it then that's fine. He did say vaccinations can trigger an attack on the peripheral nerves but almost always gets better over time or at least does not progress. He is also running some blood tests. He said think about the he emg over lunch and let me know. So here I am at lunch thinking about the stupid emg.
 
Yeah I'm going to go ahead and do it since this is a very skilled person and I traveled so far. This is the last one though. Of course I said that last year.
 
Thanks for the update SC, yes, I would encourage the EMG especially since it was recommended by the specialist at John Hopkins (a top 5 institution). The EMG as you know and he confirms can be used for a variety of dx. Keep us updated. I think you are on the right path. PS- I too plan on saying NO to another EMG next week at Washington University. :)
 
For the EMG he did my left hand, left arm, left leg, left foot, my right leg, right foot, and paraspinals. He kept the needle in a very long time and moved it around and around. It hurt a lot more than the others EMGs, but he informed me that he was looking for polyneuropathy (since I have a lot of neuropathic pain) and fascics. The EMG started making a rhythmic sound and he informed me that I was hearing the twitching. He found twitching in several muscles. Sometimes it was a rhythmic sound and other times just a pop. The EMG was normal.After going through my history, he said he is very confident, based on the timing, that the vaccinations I had six weeks before my symptoms caused this flare up. He said some times illnesses and vaccinations can cause an autoimmune response that attacks our peripheral nerves or creates antibodies that interfere with the way the nerves function, but it never turns into something more serious. He admitted that we do not really know exactly what is going on with the nerves but they obviously are not functioning correctly.Now the following was music to my ears. He said that he has seen many people with what I am going through and he said odds are greatly in my favor that I WIIL IMPROVE. Its just going to take time. Like possibly another year or more, but it could be sooner. He also said there is no irreversible damage done to my nerves and confirmed what I already thought that some of the pain is caused by the repetitive twitching. Over time the twitching irritates the muscles and nerves. This is the dull ache I feel. My muscles frequently just quiver. He offered medicine if I need it, but I am going to try without. I have been on and off medicine for a year and a half and I am now med free. So here it is. I'm sure I am leaving other stuff out, but this is the main part. So very positive visit.
 
I believe my recovery will follow about the same course as the vaccine's effectiveness gradually wears off but that's just a guess. One thing I told the dr that made him even more confident it is the vaccines was that I broke out in hives two weeks after the vaccines were given. I had the vaccines on oct 31, broke out in hives on nov 11 and woke up on dec 14 twitching from head to toe. I had never broken out in hives before in my life and I haven't broken out in hives since. Very weird thing that happened. The doctor has seen this before and he was very confident in saying this will improve. I just have to give it time. I also agree that vaccines overall are a good thing for society but it doesn't come without risks. Ironically at Duke they are very close to a cure for cancer using a genetically modified polio virus. Something we've been trying to eradicate from the earth. The results so far at Duke are very very promising.
 
if a doctor actually orders an EMG for you, that's one thing, but I know that's not the case in the vast majority of EMGs around this place. Again, hang around this website long enough and you will see all the patterns repeat themselves. I try to help newbies avoid the cliche of BFS people having 5,6,7 EMGs and still demanding more of them because they haven't gotten the diagnosis they have already diagnosed themselves with. It just becomes an endless cycle.
 

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