Appointment at Johns Hopkins Apr 24

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Appointment at Johns Hopkins Apr 24

Postby Scboy on April 19th, 2015, 7:54 pm

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.
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Re: Appointment at Johns Hopkins Apr 24

Postby MarioMangler on April 19th, 2015, 9:00 pm

I would skip the EMG. In my opinion they are just a waste of time.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: Appointment at Johns Hopkins Apr 24

Postby Scboy on April 24th, 2015, 11:11 am

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.
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Re: Appointment at Johns Hopkins Apr 24

Postby Buzznerd123 on April 24th, 2015, 11:13 am

.
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Re: Appointment at Johns Hopkins Apr 24

Postby Scboy on April 24th, 2015, 11:41 am

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.
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Re: Appointment at Johns Hopkins Apr 24

Postby Ghayes420 on April 24th, 2015, 1:15 pm

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. :)
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Re: Appointment at Johns Hopkins Apr 24

Postby Ghayes420 on April 25th, 2015, 7:05 am

So what did Mr Hopkins have to say SC?
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Re: Appointment at Johns Hopkins Apr 24

Postby Scboy on April 25th, 2015, 11:37 am

flying back home now. Will write more later. It was informative and encouraging though.
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Re: Appointment at Johns Hopkins Apr 24

Postby Scboy on April 25th, 2015, 8:17 pm

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.
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Re: Appointment at Johns Hopkins Apr 24

Postby trustme78 on April 26th, 2015, 1:30 am

Good news indeed!

Thanks for taking the time and summing everything up.
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Re: Appointment at Johns Hopkins Apr 24

Postby Ghayes420 on April 26th, 2015, 12:54 pm

Thanks for sharing SC, hopefully this brings you some peace of mind. Appreciate you taking the time to share....
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Re: Appointment at Johns Hopkins Apr 24

Postby Buzznerd123 on April 26th, 2015, 3:25 pm

.
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Re: Appointment at Johns Hopkins Apr 24

Postby misterjuanperalta on April 27th, 2015, 7:05 am

Other than it won't change the current condition or avoid a future one, why would you say this?

MarioMangler wrote:I would skip the EMG. In my opinion they are just a waste of time.
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Re: Appointment at Johns Hopkins Apr 24

Postby Scboy on April 27th, 2015, 8:57 am

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.
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Re: Appointment at Johns Hopkins Apr 24

Postby MarioMangler on April 27th, 2015, 1:51 pm

misterjuanperalta wrote:Other than it won't change the current condition or avoid a future one, why would you say this?

MarioMangler wrote:I would skip the EMG. In my opinion they are just a waste of time.



Because I've been saying that on this site for eight years. The minute you start down the EMG path, now you have convinced yourself that you are sick and you have something worth testing. From my experience, the people who don't even bother crossing that barrier are the ones who mentally handle BFS the best. Also, as my first neuro once told me, "EMGs hurt. I don't like hurting my patients if there is no reason for it."
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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