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Last post 9 years ago by jeferris. 65 replies replies.
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Edit: Not Vertigo Called Vestibular Maigraines
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JKilburn Offline
#51 Posted: Wed, Sep 17 2014, 1:43 PM EST
Joined: 10-19-2011
Posts: 1,461
Well Ft. Wayne Neuro Shipped me off to IU Hospital in Carmel, IN. which is just north of Indy. The doctor upped one of my meds and gave me two more. I am having a spinal tap done tomorrow morning. He wants to see if there is any chance that fluid is causing the pressure around my head or elsewhere thus causing the headaches and mobility issues. Its been a full year now of dealing with this and obviously draining. He said that since I had an MRI last October he probably order a new one next month since I told him I feel worse than when I had it first done. I looked online at the needle they use for spinal taps and my butthole puckered real quick!
opelmanta1900 Offline
#52 Posted: Wed, Sep 17 2014, 2:09 PM EST
Joined: 01-10-2012
Posts: 13,954
prayers sent for you right now... I really hope they can get this figured out for you...
gryphonms Offline
#53 Posted: Wed, Sep 17 2014, 2:10 PM EST
Joined: 04-14-2013
Posts: 1,983
Positive thoughts, hope they find the issue.
JKilburn Offline
#54 Posted: Thu, Dec 11 2014, 4:56 PM EST
Joined: 10-19-2011
Posts: 1,461
Forgot to update. Had the spinal tap which was easy peasy. Felt weird but didn't hurt at all. Came back negative which is good I guess as it means nobody has a facking clue what is wrong. I go back to IU doctor on the 30th which since its been over a year will probably have a new MRI done as I told him I feel worse now than when I had the first one done. New fun side effects I'm having is pain in my hands after trying to do dishes and since december I've lost my appetite. I eat one meal a day and have zero desire to eat after that. I drink plenty of water and have a cpl of cups of coffee in the morning and that's it. That's the shocker as I'm a big boy so it wouldn't hurt to lose the weight but not in this manner. Anyhoo it's not in my hands and as always thanks for the kind words and prayers.

Josh
teedubbya Offline
#55 Posted: Thu, Dec 11 2014, 5:02 PM EST
Joined: 08-14-2003
Posts: 95,637
I hope things work out. Prayers.
ZRX1200 Offline
#56 Posted: Thu, Dec 11 2014, 5:03 PM EST
Joined: 07-08-2007
Posts: 60,662
Prayers out Josh, this has been taking forever man.
jetblasted Offline
#57 Posted: Thu, Dec 11 2014, 7:00 PM EST
Joined: 08-30-2004
Posts: 42,595
God Bless. Best of Luck with this. Hang in there.
wheelrite Offline
#58 Posted: Thu, Dec 11 2014, 7:03 PM EST
Joined: 11-01-2006
Posts: 50,119
Thoughts and prayers,,,


wheel,
JKilburn Offline
#59 Posted: Fri, Jan 30 2015, 3:51 PM EST
Joined: 10-19-2011
Posts: 1,461
Just went to IU hospital for my 2nd visit last week and they gave me a new medicine to try. I becoming my own pharmaceutical company which may be their master plan all along. We basically just flat out asked what's going on and what else could it be as I technically have a diagnosis but no results with meds. Doctor still thinks it is headache related but will not rule out MS even though MRI and Lumbar Puncture came back negative. I still have all the same symptoms from day one but now my hands start to really hurt and it'll go down to my forearms. If I do dishes or have to grip something(perv) for longer than a minute or so it hurts quite a bit. I go back in April and if nothing new we might search out the Cleveland Clinic or even try the Mayo Clinic in MN.

Josh
TrishS@CigarBid Offline
#60 Posted: Fri, Jan 30 2015, 4:28 PM EST
Joined: 06-13-2001
Posts: 3,172
JKilburn wrote:
Just went to IU hospital for my 2nd visit last week and they gave me a new medicine to try. I becoming my own pharmaceutical company which may be their master plan all along. We basically just flat out asked what's going on and what else could it be as I technically have a diagnosis but no results with meds. Doctor still thinks it is headache related but will not rule out MS even though MRI and Lumbar Puncture came back negative. I still have all the same symptoms from day one but now my hands start to really hurt and it'll go down to my forearms. If I do dishes or have to grip something(perv) for longer than a minute or so it hurts quite a bit. I go back in April and if nothing new we might search out the Cleveland Clinic or even try the Mayo Clinic in MN.

Josh



Hey Josh -

if its any consolation, it took the doctors 3 years to come back with a definitive diagnosis of MS. And even with that, every time the medical group brings on a new neurologist, that doctor wants to begin the process all over again. My LP (lumbar puncture) came back negative and it took about 8 MRIs before they finally found a 'tiny' (their words, not mine) brain lesion. My symptoms aren't the typical MS symptoms which is why they struggled with it.

It may take time but eventually, they WILL figure it out. Until then, keep your chin up and positive thoughts. They'll help you more than most of the meds the doctors will give you!
rfenst Offline
#61 Posted: Fri, Jan 30 2015, 6:57 PM EST
Joined: 06-23-2007
Posts: 39,436
JKilburn wrote:
I go back in April and if nothing new we might search out the Cleveland Clinic or even try the Mayo Clinic in MN.

Josh


Why wait. Go now. A fresh perspective may bring an accurate dx.
danmdevries Offline
#62 Posted: Fri, Jan 30 2015, 8:01 PM EST
Joined: 02-11-2014
Posts: 17,527
IMO if you've got an issue that couldn't be resolved by local specialists, you go to a university medical center. If the fresh faces deep in case studies and medical texts can't recall a similar case to chase a diagnosis, its time to move on to a larger research facility like Mayo or Cleveland among others.

I wouldn't wait, if your insurance covers you, go there.
JKilburn Offline
#63 Posted: Sat, Jan 31 2015, 2:59 PM EST
Joined: 10-19-2011
Posts: 1,461
TrishS@CigarBid wrote:
Hey Josh -

if its any consolation, it took the doctors 3 years to come back with a definitive diagnosis of MS. And even with that, every time the medical group brings on a new neurologist, that doctor wants to begin the process all over again. My LP (lumbar puncture) came back negative and it took about 8 MRIs before they finally found a 'tiny' (their words, not mine) brain lesion. My symptoms aren't the typical MS symptoms which is why they struggled with it.

It may take time but eventually, they WILL figure it out. Until then, keep your chin up and positive thoughts. They'll help you more than most of the meds the doctors will give you!



Thank you.
JKilburn Offline
#64 Posted: Sat, Jan 31 2015, 3:08 PM EST
Joined: 10-19-2011
Posts: 1,461
danmdevries wrote:
IMO if you've got an issue that couldn't be resolved by local specialists, you go to a university medical center. If the fresh faces deep in case studies and medical texts can't recall a similar case to chase a diagnosis, its time to move on to a larger research facility like Mayo or Cleveland among others.

I wouldn't wait, if your insurance covers you, go there.

That's where I'm at now. Tried the big city (Ft. Wayne) neurologist then they referred me to Indiana University Hospital which is where I go now. Only been there twice. Parents are nudging to go to the larger facilities but they don't pay our bills and they obviously mean well. Can't put a price on your health people say but I kinda disagree as I'm not sure being homeless with kids but healthy is better than where I'm at now. Trying to stay grateful as other still have it worse than I do but it's difficult as I can't work and it's drained our nest egg to a few hundred dollars and even with my wife being a teacher the insurance isn't great as her union here is worthless. With all that going on we will hopefully make our way to the larger facilities and get this figured out. Sorry if this comes off as a pity thing but it truly is not more venting than anything. I truly am grateful and thanks to all for the advice. I wouldn't post updates if I didn't appreciate the feedback.

Josh
jeferris Offline
#65 Posted: Sat, Jan 31 2015, 4:59 PM EST
Joined: 07-27-2012
Posts: 1,236
Prayers Brother...

John
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