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lepman posted:
Hi, I'm new to this forum and have been Diagnossed as Probable Pakinsons,by an Enviromental Specialist, and he believes that I am now between stages 2 and 3. I'm not real sure If that is what it is for sure because my current Neuro won't say it is or isn't for sure because there is no difinnatve proof for Parkinson's, and keeps telling me that my M.R.I.'s show nothing and that My A-typical tremours are very entertainning? What ever that's supposed to mean .And keeps saying that a Vestibular issue is more likely. I have been tested many times for a vestibular issue and have been told by the E.N.T. Doc's why they feel that it's a Neurological Issue and explained why they know it is and went over all the vestibular issues and why they have ruled them all out.

The E.N.T. Doc's also have told me that I do have a 98% loss of function for balance in my right ear and was starting to progress to my left ear, and that it has been progressivly getting worse sense my first test and something is causing it to happen. They have also told me that once it is gone you can never get it back and that if I totaly loose that function in both ears I will not have any balance at all..That was over a year ago.

I feel dizzy and off balance 24/7 365 and never goes away, Have lots of joint pain and muscle pain, hard to swallow food at times and choke sometimes even on my own saliva .I have a hard time finding my words and have major problem solving issues as well short term memory issues, as well as speech problems.I have blurrred vision and double vision at times, especially when I follow movement. Trying to focus on the object when motion stops is the hard part.I have numbness burnning and tingleing sensations in my left leg and my right arm has the shakes and tremmors. sometimes when at rest and sometimes while I'm using it.

My reactions and actions feel as if were being slowed by something even boardline being stopped by something. I guess I should explaine the dizzieness better, It's not a spinning sensation but like being Very Very drunk and haveing no control of your movements or ability to walk straight and your sense of balace is way off kilter. It never stops until I fall asleep. and every morning I wake the same way. I found out that I have E.D. never even thought that would happen.

My Neuro want's to dissmiss this as Vestibular issue and keep testing for a vestibular issue. I feel that this is a wrong direction and have no way to get a new Neurologist who will listen or treatment. I guess I'm looking for some guidance and or some help in getting Help....Any thing at all would be very appreacted thanks for listening......

I get sick alot ( throw up) I think it's because of the dizzieness and trying to do things and I over do it, because movement and motion dose make it feel worse. My neck and shoulders are so sore and stiff all the time because I have a hard time keeping my head balanced all the time and I believe it's because of the need to keep my sense of balance. If I'm makeing sense there I hope you under stand.
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lepman responded:
P.S. I don't know very much about this site and if anyone can see other postings from other forums but if you want to know more you can check out my postings from the M.S. forum...Thanks for listening.....
 
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worn1 replied to lepman's response:
What is preventing you from getting a second opinion from a different neurologist?
w
There are none so blind as those that will not see
 
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lepman replied to worn1's response:
Stuck In the V.A, System....No Insurance to see outside of the V.A.
 
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worn1 replied to lepman's response:
try the patient advocate. write down everything you have gone through because the doctors cannot agree on a diagnosis. If possible try to get a referal to a civilian neurologist. FYI Parkinson does not show up on MRI. The neurologist goes by observation and appearance. If they think you have Parkinson's you are started on medication. If it works you stay on the medication. If it doesn't it's back to the drawing board for a diagnosis.
If they refuse to send you to a second neuro ask to be put on medication for Parkinson's. If it doesn't work your neuro was correct. If it works do not gloat just continue treatment and read as much about parkinson and treatment.
Dr Stacy feel free to jump in anytime. Your input would be appreciated.
w
There are none so blind as those that will not see
 
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worn1 replied to lepman's response:
thinking about this a little longer i would get a second opinion from another ent doctor if parkinsons does not pan out. In fact if you are between 2nd and 3rd stage your neuro shouldl have no problem diagnosing parkinson.
w
There are none so blind as those that will not see
 
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lovedogs1955 replied to worn1's response:
I don't know much about the VA system since I am a civilian, but it appears to me that another opinion or two is in order. Worn1 gives good advice about the logging of symtoms and even where/when they occur. Also, any input from close friends or family is excellent to add. I do know that diagnosis of Parkinson's is basically that of elimination and can be difficult. My own diagnosis took over 6 years, but because I did keep track of what was going on and told all of my doctors the SAME story every time, it made it slightly easier once things started to fall into place. It also helped with fighting Social Security to obtain my disability status. Good luck.
 
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lepman replied to worn1's response:
Once again all that you have suggested I have tried and because it's the V.A. hospital that we are talking about here.They tell ME what's wrong and How I'm feeling,and what they are going to try.I Have no say in it all and tell ME if they are going to do anything at all. If I suggest any kind of treatment or Diagnossis I get told No, it's not that. I always try to find out what has been ruled out and what was tested for but never get any answers.

Patient advocates ? they Listen to us, Me and the wife,write down what we say but nothing gets done or is ever talked about after that. I have tried to request a second opinion and to see outside help but get denied. You see the V.A. has to approve it before that can happen.We have asked for refferals as well but Denied. The neuro I am seeing tells me my A-Typical tremours are highly Entertainning and that I.m too young to have Parkinson's .

Then I ask her why all the other department's that she has sent me to for testing always ask me what stage of parkinsons I'm in or even tell me that they think it's Parkinsons as well. I have tried to reason with the Neuro and tried and asked what they believe it to be and try to keep an open mind about some of the many things that they tell me but it just don't fit with the symptoms, like Migraine without headache, Or even a vestibular Issue, Because Like I was explained over and over,

I would at some point or points with a Vestibular problem you would Have or be without symptoms because the body would be able to adjust to relieve some if not all the balance and dizzieness issues. and like they tell me there is way more symptoms happening to me that dosen't go along with a Vestibular issue and that it's progressing not stableizing.

This has been going on with me 24/7 365 for four years now never stops.I can handle the pain and muscle cramps and all the other symptoms but the Balance and dizzieness issues really makes life hard to function.
 
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worn1 replied to lepman's response:
Can you switch va hospitals? Make an appt to speak with the person in charge of the va facility you are using. write to your representatives. Become the squeaky wheel. Is there a local news statiion that tries to resolve problems. News on your side channel seven is the one in my area. Get a hold of them and see if they are interested in airing the problem you are having with va. the last thing the government wants right now is bad publicity about the care of veterans.
There are none so blind as those that will not see
 
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worn1 replied to lepman's response:
one last thought. there is the inspector general.
1800-488 8244
http://www.va.gov/oig/contsct/hotline.asp
google va hospitals investigated by the office of the inspector general. some interesting cases.

also if there are others having problems with this neuro see if they will join you in your complaints. multiple complaints given at the same time will catch attention. be sure you and anyone else have your documentation. do not threaten. if the hosp will not listen go to the inspector general.

good luck
w
There are none so blind as those that will not see
 
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worn1 replied to worn1's response:
promise last comment. the complaint should include all doctors as they are not working in your best interest when they will not agree on a path o treatment. 4 years is too long.
There are none so blind as those that will not see
 
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lepman replied to worn1's response:
I have tried to get seen by another V.A. hospital, and got told that I have to use the one I have been going to something about Zone's and regulations that they follow. I have contacted my senator and my congressman about my case and both have been stone walled and both have told me that they have exhausted thier options with the V.A. hospital and basicaly told me there is nothing more that they can do from thier end. I have talked with the Head of Neurology Case manager at the Hospital to no avail, I have talked with the V.A. Patient rep. and got no where. I have tried to request a second opinion or to be sent to another Facility cavillian or V.A. directly with the Neurology Doctor but that got us a poliece escourt out of the hospital.
I don't know how much squeekier I can get,,, I did call that number from the I.G. That you mentioned and thanks for that,and have been told to try the Patient advocte again. so I called them and I explained everything to her about what is and what went on with me and she seemed like she is going to get some real answers especially when I mentioned that If this is going to continue in this manner I would have no choice but to go to the I.G. about this.
I also explained to her about everything that has been going on with me and how things have been going as far as treatment or diagnossis really makes the hospital and it's staff look real bad. I didn't just wake up one day and say, I think I'll just go to the V.A. hospital and mess with them because I have nothing better to do.and waste the gas and the entire day just to be seen by them.not to mention going through all those tests, especialy getting the two blood clots from them.I also told her that I am getting S.S.I. and because I had to appeal it all the way to a Hearing the Judge awarded it because of what she saw me and how this effects me,and because of the lack of trestment and lack of a Diagnossis from the V.A. and when I told her everything about my case she was really appauled abot the whole thing.
I have to say I know about the I.G. while I was active but didn't think I had that option now that I'm inactive.So thanks again I think this gives me a few more options and jsut maybe this will get the ball rolling again.
 
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worn1 replied to lepman's response:
keep up the pressure
good luck
w
There are none so blind as those that will not see
 
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worn1 replied to lepman's response:
one last thing. i can not stress this enough. document document. record everything said date times . have a witness with you. take down all names in appointments regardless if they say they are here to learn or observe. these are the healthe care providers witness. if you are to have a consultation make sure some one is with you. you have put the va on notice about the ig. so they will at all costs cover their buts. I am aRetired Army Nco ---Health care provider
Please take the advice.
There are none so blind as those that will not see
 
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lepman replied to worn1's response:
Let me start with I had a new appointment with the neuro's at the V.A. and I'm not sure what made the differance , Mentionng I.G. or just talking with the P.A. again but they had a new out look with me. The new Neuro was demanding to know from the student doc why I wasn't tested for things , He didn't have any answers for her and had me scheduled for some long over due tests like lumbar puncture and a work up for Gluten Ataxia...?

It also may have made a differance with haveing my wife's uncle there sitting next to me and writting everything down because they were really checking him out during the visit....even looked a little concerned about what and why he was doing it. But I also found out that the Hospital is currently under an I.G. investigation and I think that is more likely the case why I seem to be treated with a little more concern....I don't care either way, This has got to be figured out soon because this is really getting worse and still no answers.

The new Neuro agrees that this has gone on way too long with out any answers ...but then again I have heard them say all that before , so i'll have to wait and see where this goes. Maybe all a show because of the investigation but ya never know...I appreactate all the advice and guidance...It was a great help to know that I still can go to the I.G. if I have to...and that may still have to happen....I hope not..


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