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 #116367ElectraParticipant
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 #116376BrynParticipant
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.
May 24, 2019 at 10:31 am #116385Miroslav PetrovicParticipant
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 #117187Morany TrujilloParticipant
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 #117208Merissa MarcoParticipant
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.
January 4, 2020 at 6:05 pm #117387
(update to prev. post)
My GBS symptoms were in BOTH legs, but I was only paralyzed in one leg.
Also the 1st neuro that tested me within 4 weeks, actually stated it could be GBS, but it was a “long shot”, and just ignored it. Can anyone tell me how this is not malpractice?
The 2nd neuro I saw about 4 months later diagnosed it within 15 minutes! I then waited another month while the doctor played games with the insurance co. because I was diagnosed after 3 weeks of symptoms. Maybe the IVIG would of worked? It did not work 5 months into the disease.
There are a lot more “bad” doctors out there than good in my experience, especially in San Diego.
January 12, 2020 at 7:44 pm #firstname.lastname@example.orgParticipant
I empathize with everyone. Unfortunately GBS, which I am recovering from, has such a variety of symptoms that it is often difficult to detect early on. I was lucky in a way. My first symptoms were a mild headache (I seldom got headaches unless I had a cold) and just felt really tired. I went to work, nonetheless, for three days. Then I came down with severe diarrhea for three days which really drained my energy. I rested and drank lots of fluids on the fourth day which helped me to regain some energy. I went back to work the next three days, but the overall fatigue did not go away. Finally I saw our family physician. She checked all my vitals, did a thorough exam but could not come up with a diagnosis. She figured that maybe my bout with severe diarrhea was still a factor and suggested that instead of going back to work, I go home and rest, which I did. The next morning I woke up with severe neck pain – the back of my neck as well as both sides. I could not turn my head. And the tiredness was still there. I called my doctor who recommended I go to the ER at our local hospital. The nurse practitioner on duty at the time gave me a muscle relaxant for the neck and an IV to rehydrate me. I left the hospital feeling better. The nurse practitioner on duty also prescribed six more muscle relaxants, one each 12 hours apart. I went home and went to bed. The following morning I took another muscle relaxant and within a short time I started feeling worse. I felt dizzy if I moved my head fast and it felt like my energy dropped about 30%. When sat down on the edge of my bedthat evening to take my Sox off I could not raise my left leg onto my right knee. I didn’t think much of it and used my hands to raise my leg.
The next morning my wife watched my go the the bathroom and noticed I was dragging my left leg. She became alarmed and insisted we go back to the ER. I walked into the ER. The doctor on duty looked at the way I was walking asked me a lot of questions and within the hour suspected GBS even though he did not mention it to me. All he said, as he waved his index finger warningly “you are not going home.” He ordered an ambulance to take to the university hospital and there in less than 24 hours they confirmed with a spinal tap that I, indeed, had GBS. Within 24 hours of my diagnosis I could not move my legs, arms, hands and fingers. I could not sit up, scratch my nose or turn in bed. It was scary. I was in in-patient care for nearly six months. Today, 18 months later, I continue strengthening exercises and mobility exercises. I am back about 80%. All I can say I have a whole new appreciation of life. I learned much later that the ER doctor had encountered GBS before, so he had some familiarity with the symptoms.
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