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08-23-2010, 08:47 PM | #1 | ||
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Junior Member
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Hi everyone. I'm new here. My symptoms started about 2 years ago with numbness in my thighs when I stood still for any length of time. My doctor sent me to a rheumatologist who couldn't find any problems and told me it would just go away. Around a year ago the pain started. I went back to my doctor and he sent me to a neurologist. She ordered an MRI of my spine, which was normal, and then of my brain also normal. I then had an Electromyography (EMG) and nerve conduction study (NCS). These also were normal. I was told that all we could do was try and treat symptoms. I was on Neurotin, which didn't work. Pain, sensitivity and numbness got worse and spread into my feet. I went to Johns Hopkins University Neurology in Baltimore, MD and they ran another EMG/NCS and an MRI of my neck - all normal. The doctor sent some recommendations for 3 meds (Neurotin, Cymbalta, Lyrica) to try to my neurologist here in VA. Cymbalta worked fairly well at first later she had to added Lyrica. Hopkins ordered a battery of blood tests, 13 vials of blood - all came back normal. Hopkins then ordered a skin biopsy to test for small fiber neuropathy - normal also.
My DX is Polyneuropathy - Idopathic. Pain, numbness, sensitivity continues to get worse, especially at night. It is also spreading up my lower back. My neurologist referred me to the John Hopkins Blaustein Pain Treatment Center after saying that she didn't know what to do. I have an appointment, first available, in 5 weeks for an initial consultation. I hope I can still function by then. I do feel very fortunate to be this close to Hopkins as it is one of the top rated medical centers in the country. However, it concerns me even the top hospital in the country doesn't know what is causing this or how to treat it. My fear is that if they can't treat the cause then the symptoms will just keep getting worse. Anyway I've been reading the posts here and thought I'd share and see if anyone had any thoughts on my condition. |
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08-24-2010, 09:31 PM | #2 | |||
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Grand Magnate
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Hi Hermes,
I see you've been finding your way around and have been posting here at the PN forum. Not sure if anyone has mentioned, but clear at top of page is a VERY helpful section called 'PN tips and resources'....it may be of great help.....at least in gaining more understanding of what you are dealing with and may help you in asking Q's at your John Hopkins appt. I hope that appointment proves very beneficial and I wish you the best. Please let us know what you find out k. Others will be along for support Glad you came over here to this forum. I saw you at the New Members Intro's several days ago. Caring Rae |
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08-25-2010, 03:50 AM | #3 | ||
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Member
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Hi, Hermes -
As you say, even one of if not the best facility in the country hasn't been able to come up with a Dx for you. Where is the program Mystery Diagnosis when we need them? Now wish I'd written down the causes of some of the diseases that program has presented. Stuff nobody would think of - but some docs did. For whatever it might be worth - did JH do autonomic nervous system testing on you? Did they test for things like Guillain-Barre (not sure of spelling), Charcot-Marie-Tooth, hereditary neuropathies, etc.? Would think so. If not, though, you might ask if they are possibilities. Good luck at your appointment, and try to hang in there. If you feel you're getting worse, though, don't hesitate to call and see if you can be fit into the schedule really soon. Sheltiemom |
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08-25-2010, 08:26 AM | #4 | |||
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Senior Member
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A comprehensive list of all the tests for various neuropathies
can be found at www.lizajane.org. You can use it as a checklist to see what you have and have not been tested for. I too, go to Hopkins- and at one time was referred to the pain clinic, by a neuro who was taking my doc's patients when he was on surgical leave. This neuro didn't have a clue (my neuro would've handled it differently)! The pain clinic is run by the dept of anesthesiology. They are 99% drug oriented and highly suspicious of everyone as a habitual drug user and opiate addict. They were not able to help me, and when my doc got back from sick leave, we both worked out a better treatment for me.
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Bob B |
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08-25-2010, 06:21 PM | #5 | ||
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Junior Member
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Quote:
I have had some autonomic symptoms - my neurologist sent me to a cardiologist for a tilt table test but he wouldn't do it. Says noone does anymore and insurance won't pay for it. If the problem - blood pressure drop when I stand (light headiness) gets worse I'm supposed to come back and he'll put me on some meds to see if it helps. The guy I saw at JH specialized in MS and and transverse myelitis. Those were ruled out. I think he ordered test for all the other stuff also. |
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08-25-2010, 06:23 PM | #6 | ||
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Junior Member
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The doc I have an appointment with also does some Neurostimulation and I'd like to take less drugs so we'll see
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08-25-2010, 07:24 PM | #7 | |||
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Senior Member
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they still do tilt table tests here in the nyc area
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08-26-2010, 04:31 PM | #8 | |||
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Member
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Quote:
__________________
. ♥ "Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before." -Holley Gerth ♥ My name is Sarah and I am 25 years old. I have a lot of chronic health problems. Peripheral neuropathy and POTS (postural orthostatic tachycardia syndrome) keep me bedridden the majority of the time. I also struggle with degenerative disc disease, disc desiccation, spondylolisthesis, arthritis, polycystic ovarian syndrome (PCOS) with insulin resistance, allergies, sound sensitivities, and other health problems. |
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08-27-2010, 03:48 PM | #9 | ||
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Quote:
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"Thanks for this!" says: |
08-27-2010, 08:00 PM | #10 | |||
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Senior Member
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they are running scared from the DEA.
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"Thanks for this!" says: | kpRN (08-28-2010) |
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