Connect
wrong diagnosis
Everyone be careful if you do not think the diagnosis that you have been given from your Neurologist is correct do your own research. My husband was diagnosed with Pero apathy Neuropathy and you only could treat the symptoms. He was losing his ability to walk and told us that no surgery will take care of it.
After 1 short visit and a few tests he was diagnosed. Which I knew that he DID NOT have Paro apathy Neuropathy.
Luckly, we have a friend who is a Neurosurgeon. We sent all of the tests that the Neurologist requested to him. His first question was were was the Thera sic Spine MRI. The Neurologist was so quick to diagnose him he did do that test.
Obliviously we stopped going to that Neurologist because he had a tumor in his spine that was clearly defined with the Therasic Spine MRI. He has since had surgery and now is on his way to walking again. If we had listened to that Neurologist he would be paralyzed by now. Because the tumor that was growing in his spine at the T4
was responsible for the waste down movement and it was closing up
quickly. Keep asking questions and talk to anyone that you know.
Thankfully we had a friend that knew exactly what was going on!
Like
Helpful
HugInterested in more discussions like this? Go to the Neuropathy Support Group.
Connect
I, too. was given a bad dx from a neurologist. She said my body wide contractures were psychosomatic. I knew that wasn't so. I eventually made an appt with another neurologist in the Movement Disorder Clinic. When I got there they wouldn't let me see the doctor with whom I had an appt. I was told I had to see the last doctor I saw. Unhappily I saw her. She not only told me again it was psychosomatic but that she banned me from seeing any other neurologist in that clinic. I had on my second concussion contractures go from neck down my right arm. After my third concussion these contractures went body wide. Very recently I was properly diagnosed with C3- C5 damaging my phrenic nerve causing my diaphragm to set off contractures depending on neck position. It took years to get that diagnosis and two very smart people, a PT and my pain management doctor. It pays to be your own advocate!
-
Like -
Helpful -
Hug
8 ReactionsI am 68 now and have suffered most of my adult life due to more than 1 actual several misdiagnosis. They just guess at what is wrong instead of figuring it out . They put it in your records and after that no other Doctor wants to take the time to see if they were wrong . They just keep giving you the wrong medication that eventually causes other serious health issues. This is not all Doctors but way too many.
-
Like -
Helpful -
Hug
5 ReactionsWelcome @bobcathunter, It can sometimes be difficult for doctors to diagnose the specific causes for neuropathy and many other autoimmune conditions. I agree with @barbbielor that you have to be your own best advocate for your health and learn as much as you can about your symptoms, condition and what treatments may be available. What has helped me be a better advocate for myself is to have a discussion plan along with some prepared questions for upcoming appointments to open a line of communication with my primary care doctors. One site I've found with a lot of helpful information is the Patient Revolution - https://www.patientrevolution.org/tools.
It sounds like you a few bad experiences with being diagnosed. Did you find anything that helped make things better?
-
Like -
Helpful -
Hug
4 ReactionsHi,
I could add that the first oncologist I saw, missed my stage 4 NHL. Of course the 'golf balls' highly visible in my neck were of no great matter. She did not test once for any sign of cacer in my blood, or order any biopsies. In the end I found a much better doctor, that I trust. I am here and that says so much. His nurse did not think I could possibly have neuropathy.... she was wrong.
Finding a great doctor is hard, but worth the effort.
JFN
-
Like -
Helpful -
Hug
7 ReactionsMay I ask where you live?
In the Capital District area of NY.
I haven’t been helped yet but it has taken the last 20 years just to find a specialist that would actually look at my symptoms .
-
Like -
Helpful -
Hug
1 ReactionAfter a head injury 9 neurologists and forty years of facial pain, having five teeth pulled, six root canals with dentists using grinding wheels to even my bite and at least three suggestions of craziness along with constant pain shaming and so many mis diagnosis of facial pain. I had five hours of surgery to fix the torn meniscus, grafting collagen to replace the missing discs and clearing away the fiber and bone that had attached my jaw to my skull all in both sides of my head I was diagnosed with a broken jaw in the original accident causing irritation and injury to both Trigeminal and occipital nerves. All those years. I gave them textbook symptoms but no one recognized either neuralgia. Now the covid vaccines have irritated it even more. My whole life in pan because no neurologist listened. The still don’t. And if any of them read this they’d still pain shame me. If all else fails try a physical therapist. They’re really the best diagnosticians because they ask questions, spend time with you and listen. And if they’re good they’ll find a good dr for you.
-
Like -
Helpful -
Hug
2 Reactions@wotherspoon
Oh my goodness! You have been through enough for a lifetime and more.
I have occipital neuralgia. It is the result of my buying a new pillow.
It was identified because I lost vision in one eye temporarily 3 times.
I also had scalp pain, face pain and numbness.
I went for physical therapy which helped.
-
Like -
Helpful -
Hug
1 ReactionHow do you know if you have the right diagnosis? I had the spinal puncture and that was how I was diagnosed. But, I have a titanium plate in my neck and my back is full of herniated docs. L5, S1, T 11,, 12 & 13. Titanium plate fused together 3 docs in my neck. The vertebrae under plate is bad now to and giving me a lot of pain. So, with the spinal puncture completed, is that a confirmed diagnosis of SFN? Thank you