May 7, 2019 at 4:23 pm #116365
I saw a “top 10” neuro doc within three weeks of GBS symptoms. He said I had diabetic neuropathy. He sent me for nerve testing and they were confused about the result. They mentioned GBS but said that was slim to none. I went to a hospital for a night due to breathing problems. Same result – diabetic neuropathy. Five doctors later I was finally told GBS. It started with a bad flu and three weeks later the tingling started in toes and finger tips and progressed for three weeks till one leg paralyzed. It tried to get my other leg, but I fought it off. It tried to stop me from breathing. I think mental attitude can go a long way with this disease. I also think doctors should be held accountable for bad diagnosis.May 8, 2019 at 12:33 am #116367
Hi. I’m not familiar with the one leg paralysis experience- usually it is symmetrical, but I’m not an expert. Nor am I a person with diabetes (yet), but I have known several and if they ever had trouble breathing it was from obesity, not diabetes. I have mild neuropathy and developed full-blown asthma at some point in my hospital stay.
I’m sorry you had such a difficult time with your diagnosis.
Diagnosis can be difficult with a relatively rare disorder. I’ve heard of people with Multiple Sclerosis who aren’t diagnosed properly for years! You can consult a lawyer, but it sounds like you are still alive and still have all of your parts. If I could sue for “them” putting me on a med that caused me to gain too much weight, that would be sweet. But I can’t prove that 100%. And the law does not allow to sue for stupidity. So, there you are.
I hope someone else has a better answer for you soon.May 8, 2019 at 2:30 pm #116368
Thanks, I feel better just getting some of that anger off my chest.May 18, 2019 at 7:21 pm #116376
You can sue for anything in a civil lawsuit. In order to win your attorney would have to prove malpractice and/or negligence. GBS/CIDP is very difficult to diagnose because the symptoms are throughout the peripheral nervous system. Misdiagnoses are not uncommon.
I have CIDP. I consider myself very lucky to have been diagnosed in only six months. I traded emails with one man who had been misdiagnosed for 10 years. He ended up in a nursing home. He was only diagnosed when his lungs started to shut down. Most neurologists know next to nothing about GBS/CIDP.
I had diabetic neuropathy start about 12 years ago. I took medication for the blood sugar and the pain went away leaving me numb on the bottoms of my feet. The pain started coming back three years ago. The first thing I did was get my sugar checked. No change.
Then the symptoms started adding up trouble walking, more pain in hands and feet, migraines, unexplained dizziness, deteriorating cognition. For the first five months, my initial neurologist treated the symptoms. I had just gone on STD from work a few weeks earlier and found myself in the ER. My pain was about 12/10.
The following week at an appointment with her, I let loose on her with all my expletives and what cognitive ability I had left. She referred me to a neuropathy specialist. He came in on a Saturday to see me. He had the diagnosis after my first nerve conduction study.
Cheers, BrynMay 24, 2019 at 10:31 am #116385
I was diagnosed with Multiple sclerosis by 3 different doctors, Dr. Google convinced me to do an ENMG and only then did all of them change it to GBS!
Yes, doctors should be accountable for misdiagnosis, too bad they are not!October 2, 2019 at 10:34 am #117187
Before I was diagnosed with GBS I went to 3 different primary care physicians and 1 urgent care center who all said it was a pinched nerve and injected me with muscle relaxants. After I could barely walk, I dragged myself to the ER and immediately received a diagnosis after a spinal tap. I wish they would have diagnosed me sooner, and I have a lot of anger just like you. But really, I don’t think there’s anything I can do. And to think that this same situation happens to tons of people on a daily basis it’s so sad.October 15, 2019 at 2:04 am #117208
I went to urgent care…doctor told me I was hyperventilating…that’s why my hands were numb. Ordered cbc and cmp. Called back 2 days later saying i was worse, doctor called back 6 hours later while I was getting my lumbar puncture at the hospital and lectured my voicemail for not getting the bloodwork done. ER did those tests….all normal, they would have told him nothing.
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