posted
Hey guys, Went to John Hopkins neuro for dystonia in my arms legs neck and, Nystagus all which I was having right before his eyes and after a vague exam stated I had conversion disorder! Stated I could have been sexual abused!! OMG!! I looked at him said ok walked out and cried! When I told my husband he was ****ed. This is my first time with JH. I swear it felt like I was getting a psych evaluation just from the basic first time paper work...i mean really do they need to know if I own guns how many and if they are locked up!! I was asked and other crazy ? before I got to even tell why I came in. Well just wanted to vent. I know one of u guys warned me about JH. Guess I learned hard way. DH and decide llmd it is! Just need to find one Now. Thanks for letting me vent. I will post a list of symptoms later. Have a good day u guys lots of love and light! L&C
Posts: 5 | From USA | Registered: Oct 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I got as far as JH for dystonia but you were told "CD".
Sorry can't reply to anything thing else as I can't read further than that. Many here have nystagmus or other eye & concentration problems and do best with paragraphs of 2-3 sentences.
Wonder if you even mentioned the dreaded "lyme" word or they told you that just for the dystonia.
Still, sad but true, that's pretty much what can be expected at JH and at so many doctors' offices. It's just that JH is one of the worst to dismiss those who have chronic and complex matters - especially if "lyme" is even whispered.
Hope you find a real ILADS-educated LLMD - to assess what is going on.
Now, it may or may not be lyme but you can read more below about the process of assessment with a LLMD to assess various tick-borne and other chronic stealth infections that may be involved.
You might want to refer back to the many links posted earlier for you here - these links will walk you through the process - and explain the controversy between IDSA / JH & ILADS.
Topic: Good primary care John Hopkins in Anne Arundel county MD -
Posts: 48021 | From Tree House | Registered: Jul 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
oh yes i've heard that and more.
i even had one doctor scream adn curse at me and throw me out of his office!! that guy was crazy...
just remember "you're not crazy, you're just infected"....love my new doc...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Breaking up this post so all can read it:
Hey guys, Went to John Hopkins neuro for dystonia in my arms legs neck and,
Nystagus all which I was having right before his eyes and after a vague exam stated I had conversion disorder!
Stated I could have been sexual abused!! OMG!! I looked at him said ok walked out and cried! When I told my husband he was ****ed.
This is my first time with JH. I swear it felt like I was getting a psych evaluation just from the basic first time paper work...
i mean really do they need to know if I own guns how many and if they are locked up!! I was asked and other crazy ? before I got to even tell why I came in.
Well just wanted to vent. I know one of u guys warned me about JH. Guess I learned hard way.
DH and decide llmd it is! Just need to find one Now. Thanks for letting me vent. I will post a list of symptoms later. Have a good day u guys lots of love and light! L&C
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Thanks to TF for breaking that up for readability.
1. Symptoms. You may be able to save time and not have to do a list yourself.
In those links posted for you at your previous thread, you can see lists of symptoms - and other articles to help you decide if pursuing assessment for tick-borne disease lines up for you or not.
2. Guns. About the gun matter. Don't take that personally.
I'm not sure how it was phrased or presented but I think it's a good idea to just inform everyone about gun safety. It may not have been directed at you for any particular reason.
Or they may have a policy for EVERYONE to be presented with this information in an attempt to curtail accidental shooting, especially if children are in the home.
They see lives shattered so often due to guns that have not been secured. I would not take that personally but as a community service measure.
I hope it was a blanket statement for an awareness campaign, though, with your reply anonymous. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- By the way, I recall listening to a wonderful interview on NPR in the mid-1990's with a musician (Johnny Bush) who had dystonia and it took years for him to be diagnosed - and he had been given a psychiatric diagnosis first, too.
In addition to a LLMD, you might search out a specialist who assesses dystonia from a physio-neurological perspective - and one who understands possible environmental issues (heavy metals, mold, chemical exposure).
While lyme or other TBD (tick-borne disease) can be a cause or trigger, there may be more that a dystonia specialist can tell you - if they think outside of the box.
If there are support groups for dystonia, you might inquire there as to the range of thinking and expertise among dystonia specialists elsewhere.
Maybe a LLMD could give you a suggestion as it would help if such a person were lyme literate for that knowledge base.
No longer, though, can anyone really just go to any kind of doctor without first exploring their resume, so to speak.
We spend more time studying other purchasing decisions so, really, it just makes sense to learn about a doctor's expertise before we give our our money and the power to have our medical files forever altered.
But mostly, we all just want our lives back. When ill, we need the right medical advice and treatment. If lyme or other TBD is involved, you will not find that at JH. Big Sigh. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Sounds like my former ID Dr who asked me if I feel better during the summer...insinuating that maybe I had SAD, not infection causing my fevers.
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- By now, with all you've been through, you probably are already clear of additives. Still, just to be sure:
I assume by now that doctors have assessed you for CELIAC disease. If not, it is very important to do so. Often the biopsies are not done correctly. I would insist on a genetic blood test.
Paroxysmal nonkinesigenic dystonia and celiac disease.
Mov Disord. 2007 Apr 15;22(5):708-10.
Hall DA, Parsons J, Benke T.
Department of Neurology, University of Colorado, Health Sciences Center, Denver, CO 80262, USA.
Abstract
Celiac disease has been associated with ataxia and other neurological signs but has not been associated with paroxysmal nonkinesigenic dyskinesias (PNKD) to date.
We present a child with biopsy-proven celiac disease and a movement disorder resembling PNKD since the age of 6 months.
She had complete resolution of her neurological symptoms with introduction of a gluten-free diet.
Because a susceptibility locus for celiac disease has been reported on 2q33 and studies in PNKD show linkage to 2q, this report suggests further genetic investigations around this locus may be useful. . . .
----
Now, even if gluten is connected, lyme or other stealth infection could still be part of the picture. Many with lyme also have problems with gluten tolerance and are often advised to go gluten-free during treatment (even if not a true celiac).
But, if you have not yet explored a gluten-free diet, you may be helped by doing so - even before seeing a LLMD. Then, by the time of the appointment, you'd have more information. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Regarding the information about firearms (guns).
I wouldn't volunteer this information.
It has nothing to do with the medical reason you are there (IMO).
The information is likely being passed to other entities that consider themselves to have some kind of authority.
Posts: 56 | From Down Here | Registered: May 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The gun safety thing - as with many inner city hospitals, JH gets far more than its share of gun trauma every week.
If just mentioning gun safety to EVERY person who comes through their doors might remind those with guns to lock them up, or even those who do not have guns to be aware for where children are in the homes of others who might own guns . . .
. . . I see nothing personal about their promoting gun safety. I would hope all hospitals would do so.
Every month in my city, it seems we have at least a couple incidents of kids being shot (and often killed) in a home - by a gun that should have been locked away, out of their reach.
Sometimes, the kids were not even in their own homes. Now parents are being instructed to ask other parents when their kids visit if there are guns in their home and if they are secured.
It is intended to prevent death and serious heartache. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I've started to be suspicious of what these "medical professionals" are gathering data for... I went to a GYN once & she wanted to know ALOT of personal info... I started being a bit suspicious after that. I went to see the GYN for bad menstrual cramps - not some sexually transmitted disease or something.
Once they have on your record that you might have a mental disorder, some pathological contageous bacteria/virus, or "drug-seeking behavior"... it's not good. Gun ownership is a new one! Maybe it will be "questioning authority" next... then they will put a chip in our brain.
Anyway - I just came across this yesterday. It seems interesting. maybe they could help?
posted
Posting messages, spreading the word, PSA's, or whatever about gun safety is one thing.
Wanting information about whether an individual owns firearms, how many, and whether they are locked or not - that last part being under the guise of health reasons - is asking too much.
Using the gun safety logic, reminding patients to lock firearms or asking if they have locks on any firearms in the home would be enough.
There is no reason they need to know how many firearms you own.
Really, there is no reason (IMO) for them to know if you own a firearm, period.
Posts: 56 | From Down Here | Registered: May 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It might be helpful to have the details of the inquiry or information conveyed -- how it was presented; if it was a voluntary survey or actually part of the official doctor-patient interview?
It is a fine line, of course.
Lymed & Confused,
The PATIENT ADVOCATE OFFICE at Johns Hopkins should be able to clarify.
If part of a survey, it may be that the office you were in could have done a better job with their communication skills. -
[ 04-08-2012, 05:40 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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