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My Neuro appt is scheduled for next Friday. What should I do as far as being prepared? I have suffered from ???? for about 5 years now. Should I try to make a list of what has happened, when - for example when I had blurred vision episodes? This is my first appt. Will I need a driver if they have me do the contrast dye MRI? What is the spinal tap procedure like? Anyone had evoked potential? Any advice on this would be greatly appreciated. I am so thankful to finally be headed to the Neuro, but scared and nervous too.
Posts: 484 | From: FLA | Registered: Feb 2007
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endure Glad to hear you have gotten an appointment. In my opinion it never hurts to be prepared to share with your medical provider a list of your health history like the occurrances of blurred vision. My spinal tap was no big event. It sounds when descibed to be scary. What occurrs, to be brief, is a local small shot is administered to the middle of your back to numb the area. Then a skinny needle is inserted into the spine to take a small sample of your spinal fluid. Using this sample the doctor can make a determination of the presence of MS. Side effects I had were a slight headache for the following hour. It is all done on an outpatient basis. I was at the office about 2 hours.
Mike (kidbunch)
-------------------- We all need someone to lean on! Posts: 418 | From: Nashville, Tennessee | Registered: Jul 2006
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Endure: My wife and I have a great deal of experience with two of the three things you talked about in a post just a few weeks ago. I have Parkinson's and my wife has MS. She is not a Gulf War Vet, I am. She was diagnosed in 2002. I was diagnosed in April of this year.
What should I do to prepare? Well first, be prepared for answers from doctors to be, I don't know, we need to do more testing, or its a mental problem. Also, be prepared for the potential diagnosis of a disease. ALS, MS, Parkinson's...all diseases that don't have cures. MS and Parkinson's are treatable and you can live a relatively normal life. ALS, as you know from your father passing from it, is normally fatal.
Should I try to make a list of what has happened, when - for example when I had blurred vision episodes? YES! Make a list of everything that is going on symptom wise. You will get into the Doctors office and you will forget some things. So, write everything down.
This is my first appt. Will I need a driver if they have me do the contrast dye MRI? I would have some one go with you, just in case you don't feel up to driving after the MRI. Just a suggestion, better safe then sorry.
What is the spinal tap procedure like? Well I have had one C Spine and my wife has had four or five. They are not fun but they are not as bad as people think they are. Mostly discomfort and pressure is what I felt, and that is the same description my wife gives.
Anyone had evoked potential? Neither one of us have had an EP study done. We did have EMGs CTs, etc. Sorry wish I had some insight for you on that procedure.
I understand you feelings of relief and being scared. I had symptoms for nearly 8 years before the progression of the disease had gotten to a point that I could no longer function.
Many PD, MS and other nuro diagnosis take a long time. In the military medical system, being young, under the age of 40, doctors could not figure out what it could be. I finally was sent to a movement disorder specialty clinic at UNC. They looked at me for about half an hour and said..."you have Parkinson's Disease." For me it was more an elated feeling to just know what it was. It was not ALS, PSP (progressive supernuclear palsy) MSA (multiple system atrophy) or a number of other nasty neuro-disorders.
Stay positive, motivated and upbeat. Don't ponder and get depressed. Just know it may take time and it might not be the diagnosis you want. Hope for the best but prepare for the worst.
Dave
Posts: 45 | From: NC | Registered: Dec 2007
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It was a good thing I had an hour of therapy before my Neuro appt. I said to my therapist when she asked that I was afraid I might be putting all my eggs in one basket and end up disappointed.
That is exactly what happened. I couldn't even post I was so deflated. My VA Neuro (who was on loan, not even on staff) was educated I am guessing in India. She WAS NOT IN THE LEAST BIT INTERESTED IN MY HEALTH HISTORY. She beat me about the body with a reflex hammer, scratched me on my feet and abdomen with a pin and announced I was fine. She was not even certain why I had been sent to her. When I tried to give her some history she repeatedly cut me off. Finally in exasperation I told her I was there to have MS ruled out. She said, "Oh you don't have MS, I am sure of it" I wondered if she had x-ray vision or psychic ability.
She did agree to an MRI with and without contrast. This will take place in a couple of weeks. By the way with the now cooler weather here in Maine - I am feeling so much better . . .
I was disgusted she had not even looked at the referal notes. What have I posted in here before, 8 excellent VA visits to 2 awful, horrible experiences. I am holding in that pattern. Unfortunately I had put so much stock in this finally scheduled Neuro appt. (I also know they have an EXCELLENT Neuro on staff, I just didn't happen to get that one!)
I am not done. I'll await the MRI results, and press futher with my VA primary care and civilian providers.
I have learned so much these past couple of years, gained strength and confidence in my endeavors. You really must be a "bad" patient and continue to insist on the the best care possible. I am fortunate to have experienced some really great care at the VA - it helps to diminish the bad experiences.
I will keep plugging along. I am most hopeful that if I have optic neuritis that it will show up on the contrast MRI - or if it does not I will insist on another contrast MRI during a flare. In my case these episodes are the smoking gun they need to continue looking - especially since I responded to steriods. Thanks guys (and gals) for all your support I really deeply appreciate it!!!
Posts: 484 | From: FLA | Registered: Feb 2007
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endure Have you had a recent eye test that resulted in a drop in your vision capability? Sorry to hear your Neuro appointment resulted in your dismay. If you feel you need a second opinion ask the VA for one. If affordable or if you have PMI maybe an opinion from a Civilian Nuero may help. Just my opinion!
Mike (kidbunch)
-------------------- We all need someone to lean on! Posts: 418 | From: Nashville, Tennessee | Registered: Jul 2006
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quote:Originally posted by endure: She did agree to an MRI with and without contrast. This will take place in a couple of weeks. By the way with the now cooler weather here in Maine - I am feeling so much better . . .
I was disgusted she had not even looked at the referal notes. What have I posted in here before, 8 excellent VA visits to 2 awful, horrible experiences. I am holding in that pattern. Unfortunately I had put so much stock in this finally scheduled Neuro appt. (I also know they have an EXCELLENT Neuro on staff, I just didn't happen to get that one!)
I am not done. I'll await the MRI results, and press futher with my VA primary care and civilian providers.
Endure,
I am wondering if you have gotten the MRI yet? keep us posted please! And by the way as I read your post, they cannot rule MS either way by those armchair neuro. exams. The VA Neuro I had He said he did'nt believe in MRI results for a diagnosis and carries around his little bag O' hammers and such thinking he can diagnose with a hammer and flashlight and a scratch and sniff.. worst damn neurologist I've ever seen, I fired his ass..they need an MRI and lumbar puncture (spinal tap) to diagnose and confirm MS, not psychic ability!!
Also FYI, The VA never diagnosed my MS. I was so angry at the VA would not give me an MRI, I went to a civil hospital and asked for an MRI and got one the next morning. Then I filed the Millennium Act paperwork against the VA to make them pay for the civil hospital, and the VA paid, they knew they were negligent. Just thought I'd share for others if anyone is getting the run around and feel they are not getting proper testing and treatment, we have some options.
Good luck, God Speed,
sparks
-------------------- "America will never be destroyed from the outside. If we falter and lose our freedoms, it will be because we destroyed ourselves." Abraham Lincoln Posts: 89 | From: Ohio | Registered: Feb 2006
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What a busy week. Sparks - I had my MRI just today! W/WO contrast. I was told 3 days to read - so results by next week . . .
Next Tuesday I have a Comp and Penn for Chronic Fatigue at the VA! Which could be tossed if they discover MS. I do hope that all this other stuff puts me in the service connectable catagory if I do have MS even if it takes more time to diagnos. After all I have been dealing with the "symptoms" at the VA for a couple of years already. I am 5 years past orders . . .
Sparks and Kidbunch - I thank you for your support on this, and the comment about the "scratch and sniff" diagnoses, that made me chuckle. It can be so deflating to continue down the road with all this stuff, being a "bad patient" by continuing to question the authority. It sucks to be sick, and then to go through all kinds of bull crap. If not for this board I'd be a lonely girl.
posted
OMG, i'm not the only one.... been reading the post's have gone or am going through everything yall have talked about. im not crazy,nor alone becky
-------------------- Becky Posts: 6 | From: new york | Registered: Aug 2007
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I've had MS for years, and went down hill the last few years. Two years ago I was started on self injections of Betaseron, and after 3 months I got very sick with some generalized infection that was not diagnosed, just treated symptomatically. I stopped taking the Betaseron as it is an immunosupressive. Within a couple of months I developed Morgellons Disease. I believe it was triggered by the Betasseron.
-------------------- Praying for justice for all. Posts: 1 | From: Florida | Registered: Nov 2008
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