What to do when diagnosis does not match symptoms?

@wsteckline That is a very good question. I tried for 6 months where I live to get help and I got none. So I went out of state. I saw a neuro-opthalmologist and she pushed on the right side of my neck asked me if it was tender. It was somewhat. Then my diagnosis was occipital neuralgia. So I found a neuro-opthalmologist much closer to home and I went to see her so I could be followed. She does not think I have Occipital Neuralgia. I don't either now. When you look at the symptoms of it I haven't had what is written. She asked me if it was okay if I was referred to a Neurosurgeon and I said yes. I know it will take awhile to see one. I do know this is very frustrating to not get what is needed. I always read about things I have been diagnosed with. Before I went to see this Dr. I again read about Occipital Neuralgia and I don't believe I have it either. I do have Small Nerve Fiber and was diagnosed in 2021 with it. I woke up with full onset of paresthesia (which is pin pricks) from head to toe and in my eyes going off 24-7. It took three months to get an appt with a neurologist and I asked him how many of his patients had the same exact things I did. He said none its rare. So they took 20 tubes of blood and found no cause. So they did the skin biopsy and found the Small Nerve Fiber. So I have been taking Alpha-Lipoic Acid and It stopped the 24-7 but I still get them but not like in the beginning. I know I am repeating things here that I have said prior. In February of this year I had head pressure and blurry vision and it scared the daylights out of me. I went to the hospital and they scanned me and found nothing. They put me in the hospital for two nights on a stroke protocol. I had a Neurologist come into my room and didn't introduce himself and he said, "For lack of a better term we will call this a TIA." Transient Ischemic Attack. I did not have that and he labeled me. So when I went home it took me a bit to come back to myself. Then a Dr. came in that I used to have to call when I worked and he said, "You need to get your blood pressure under control." I didn't say a word. I called my husband and wrote down my blood pressures and when he came back I handed him the paper. He said, "OH". That was the end of that. He must have seen what other Doctors wrote about my blood pressures and copied it. Doctors I went to were blaming my problems on my blood pressure and that was not right. I see my cardiologist and I know how to take care of my blood pressure. I won't say, "I know how you feel." Because only you know that. But I understand where you are coming from. The medical field right now is not good. I am not saying all Doctors are bad. It is difficult to get answers how well I know. I will see a Neurosurgeon in an appt. It might take awhile I am sure. I got tired of seeing Doctors after the hospital visit because I didn't get help at all. So I took the advice of my sister and went to Houston Texas after I looked up Doctors there. There are some really good hospitals and Doctors there. Then there is Mayo-Clinic. I didn't know that there were Neuro-opthalmologists. I went to the Neurologist that diagnosed me with SNF and he should have been able to diagnose what I had but didn't. I basically researched Hospitals and Doctors. I see that there are hospitals that have programs for FND. I basically got tired of seeing Doctors where I lived so I looked elsewhere. I am not done in my quest. What helped me to move forward is the fact that I needed help and I got tired of what I was hearing. I wish you good luck in finding help. @rnlorena

I had head pressure and low blood pressure and passing out and vision spotty blurry at times. They diagnosed me with Fibromuscular Dysplasia. Internal carotids tortoreous instead of straight causingnextra white matter around brain stem I am now taking an aspirin to thin the blood and on Flucortisone for my low blood pressure. Took 3 drs and referrals etc....

@rnlorena Hello there,
Thank you for sharing your journey! I too have experienced similar symptoms! I have burning sensations throughout my body but mostly my head and my legs. I was diagnosed with Small Fiber Neuropathy in 2023 but the treatments I have tried have not helped with the burning. I live in West Houston as well and am wondering if you can share the names of doctors you’ve seen who have helped in some ways. I’ve seen many different doctors, some nicer than others, but no one has been able to successfully treat my symptoms! I pray you find some relief as well!

@mlorena have you considered stopping your search for an answer? It’s not uncommon anymore for doctors or other providers to say I don’t know what’s wrong with you. You might consider posing your symptoms on ChatGPT to see what pops out since conventional medicine has failed you?

@jenatsky I have, however when I have looked into it more my symptoms align with PLS. However they want to dismiss that due to normal imaging and nerve test. Which I can see, however per the criteria for PLS they can not rule out the diagnosis for PLS just in that. PLS is diagnosed by:
✔ Clinical signs (hyperreflexia, spasticity, abnormal gait)
✔ Slow progression over years
✔ Normal EMG early on (very important)
✔ Normal MRI
✔ Excluding ALS and MS
There is no blood test, no MRI test, no EMG test that “shows” PLS.
So you can tell your doctor:
“PLS is a clinical diagnosis based on upper-motor-neuron signs and slow progression, and it commonly has normal MRI, normal EMG early on, and normal CSF. My pattern of symptoms fits PLS, so I want a re-evaluation using the 2020 consensus diagnostic criteria.”
This is medically accurate.

Well we know doctors are not always correct in their diagnosis. The plus of seeing a seasoned practitioner is their experience from seeing numerous patients. You’re depending on the doctor to suss out the intricacies of diagnostic findings. Unless the 2020 diagnostic criteria has been updated it’s worth a shot. Although you don’t know whether or not your neurologists will go along with this. When we self diagnose we have a built-in bias we cannot escape. Good luck on finding answers. One last question, have your symptoms continued to play out as the literature described?

When going through my charts since 2017 I have has slow progression of symptoms. As I have seen several neurologist and they all stated consistently there is slow progression. Majority of my symptoms align with the PLS. I also have had neurologist say your to young to have "some kind of diagnosis and then they list the disorders". I believe age should not play a factor.

@jandy88us I saw a Neuro-Opthalmologist. Dr. Woon. She is with Whitsett Vision Group. They have different Groups so I called and asked where she was located. 713-365-9099. I did see just a Neurologist and his name was Dr. Brian Loftus. 713-715-6367. These are the only two I saw in Houston. I am not a Doctor but I read all about Gabapentin and they gave it to me for my issues but I read it can help with burning. After I was diagnosed with Occipital Neuralgia they gave it to me. It has helped some. I had a burning pain that would come and go in my left hand after I was Diagnosed with small nerve fiber and that was the only burning pain I have had) and now that I think of it I haven’t had it for sometime so maybe the Gabapentin took care of it. I am a retired Rn so that helps me with medical terminology. I am not the only one who has noticed how much the medical field has gone down and boy has it. Have you looked up hospitals with neurologists in Houston? I did a lot of internet searching in Houston. I did find a Neuro-Opthalmologist in Mobile, Alabama and I saw her on December 1st. I needed someone to follow me that was closer. After I explained what was going on she asked me many questions and then she told me she doesn’t think I have Occipital Neuralgia. After reading about the symptoms of ON I haven’t had the symptoms like they are listed. I don’t think I have it either. Have you looked at ratings for Doctors? I know I have somewhat of an attitude after seeing certain Doctors. I understand where you are coming from. When you have something wrong with you and can’t get the help that you need it makes it more difficult. When I first had head pressure and blurry vision on February 17th I went to the hospital for two days. When I came home from that it took me awhile to get back to myself. Come December 17th it will be 10 months since it happened. I am a stubborn woman and in this case a very determined one. I truly hope you can find answers to your issues. Please let me know. @rnlorena

Thank you for responding @rnlorena. I went to mayo clinic and they diagnosed me with FND due to abnormal imaging. However I went to 4 different neurologist and they have all said in my charts with reflexes and muscles have showed slow progression. From what I have researched that FND does not cause some of my symptoms. They went solely off of no abnormal imaging and nerve testing. I have had every type of blood work done and only things were elevated were my Kapa free light chains and my GAD 65. Still they all said FND. Once that has been put in you chart they all say its FND and go to CBT therapy. I have explained to them many times I have been to therapy and done CBT. I also mention to them im a clinical specialist for a counseling institute and was a behavior therapist for 13 years prior. So I politely tell them they can not just say its in you head and go to therapy. I went out on my own and had a genetic testing done and came back as a carrier for Limb Girdle Muscular dystrophy. When I research more my symptoms align with primary lateral sclerosis. I have mentioned that to them and they automaticity say imaging is clear. However after doing my home work in early stages your emg and imaging is normal and clinical diagnoses can be made without them per criteria. I have all the symptoms since 2017 and have shown there is progression. I go back to my movement doctor in February and want to ask her for second opinion. If you have any questions and would like to visit more please feel free to message me.