After a month of suffering and waiting and praying...the neurologist looked into my eyes and said I have no answers for you. I had some blood work and scheduled an MRI. When i told her the Urgent Care doctor said it might be TN she looked at me like I was dumb and shook her head and said, "No you don't have any pain." And on the paper she wrote abnormal skin sensations...(I clearly told her the numb feeling wasn't on my skin...that it felt very deep). And I told her that it felt like someone was pulling on my face so hard that it hurt. If thats pain free i would hate to feel pain. I'm mad at myself because I forgot some of the things I wanted to say and mad at her for not caring to listen. I just got sent back home to suffer and wait for an MRI and the results of the blood tests. Still nothing to relieve this horrible thing that I've been suffering through for a month now. I really don't know what to do =[ I could try to make an appointment somewhere else but thats just more waiting and more suffering...I don't know how to get the point across that this is killing me on the inside slowly without breaking down and crying...which I did as soon as she walked out. Uuughhhh....... =[ =[
she mentioned something viral...ms...seizures...migraine...thyroid...but no real answers
Write down any and all questions/rebuttals when you think of them - keep a pad near by and print off some stuff in the pain face tab here - or answers you have gotten here
I'm SOOO very sorry - This is awful---MRI is to usually rule out MS -- specialized MRI only will show a compression
You are probably going to have to start over -- many here have - let us know about your bloodwork if you wish and keep posting!
Another idea - if you can search for a chronic pain - or TN group in person in your area = helped me alot
Hey Bri, it is extremely hard in the beginning...more so with doctors. Heck it is hard anytime you go to the ER or elsewhere and they treat you like that. After you do find the right CARING doctors, that will sit down and actually listen, it helps tremendously! Doctors seem to discount that anyone has TN for one that it is kinda rare, then in younger people even rarer. I was 22 when I was diagnosed, and I had the EXACT same problems. I had my first ER doc one time give me Advil (lower dosage than OTC might I add) and treated me the same way.
Once you do find a good Neurologist, primary doctor and whatnot. My recommendation is for one, print out what TN is out of the neurologist medical book they have. Some/a lot of ER/random doctors I have met only heard of TN in med school, and its not cool to hear "let me Google acute treatments real quick." Then, have your neuroogist type up a simple letter stating you have TN, what branch it is mostly on, etc, and if they have any questions call him at blah. Will change the outcome of an ER visit, trust me. For me being in the military, and young...military docs are not really "prepared" or trained to treat TN.
Keep your head up!
So sorry to hear of your travail, Bri... Your neurologist appears not to have been appropriately trained. You will need to see someone else who has treated other Trigeminal Neuralgia patients, or had recent post-doctoral training in facial neurology and neuropathy.
You might find a doctor from our recommended doctor list (see menu above). If there's nobody within reach, then send me a note by site email with your location, and I'll dig out a neurologist who is closer to you and on the "Top 100 Doctors" list for your state. Meantime, if you are in a pain crisis, you can walk into any Urgent Care Center or hospital Emergency Room, with a list of your symptoms written down in advance. I'll help you prepare the list, if you want some oversight and suggestions.
Go in Peace and Power. And know that you do not go alone.
R.A. "Red" Lawhern, Ph.D.
Resident Research Analyst, LwTN
thanks you guys! i was thinking of calling the other neurologist that the urgent care doc referred me to. i dont have many options and have to be careful that I'm "allowed" to see them because I am on medicaid. (I think thats the other reason she didnt really want to hear me out). I obviously want to do the MRI but how would I go about it? Would I have to cancel that MRI appointment and have the other doc ask for one? I believe I should hear back about the blood results in the next few days...or I may not...I think its the whole no news is good news thing. I was sooo prepared...I wrote down every symptom and all my info but she was soo rushed that I never even took the papers out...I had to interrupt her questions just to tell her any symptoms I had. She also acted like I was stupid for telling her about the weight loss (said something along the lines of...You know I am just a neurologist right??) I felt verrrry uncomfortable with her...almost judged in a way. She kind of down played all my facial symptoms completely...I told her the other things that have been happening as well but I wasn't intending on not being able to talk about my face more. I know it wasn't all her fault...in the moment I just kind of lost my focus...there was so much going on. But if I go to the other neuro I'm going to make sure I pull the papers out.I learned my lesson. I agree I don't think she knew much about it at all. =[
well there went any hopes i had....the other one i got referred to has HORRIBLE ratings from patients online
SCARYdoes not know much about anything told my nephew he only had migraines now he is in intensive care with a brain stroke quack
TALK ABOUT PRACTING MEDICINEHE IS STILL PRACTING!!!Reviewer: Former patient in Magnetic Springs, Ohio
I REALLY do not like this doctor and believe he should not be permitted to be a Dr, just look at the title. Trust meI have been to A LOT of Neurologists but have NEVER been to one like this before. I tried to give him the benefit of the doubt but I should have trusted my first instincts! It is as though the patient is BOTHERING him and wasting his time! WE pay himnot the other way around. I felt I was the doctor and not him by having to explain to him the symptoms versus the diagnosis. I did not feel it was necessary for me to even be in the room with him. If the patient tells him that another doctor told them something and that doc DOES NOT put that information in their notes then it is NOT TRUEESPECIALLY the doc he thinks is God. List of things he DOES NOT do:Look at the patient.Listen to the patientBelieve what the patient says.
Read more: http://www.vitals.com/doctor/profile/1194735738/reviews/1194735738#...
and with me being on medicaid i have to have a referral in order to see a specialist. sooo im screwed =[
Why would you get an MRI for abnormal skin sensations. I think you should search for another physician. It doesn't sound right to me..Wouldn't she just send you to a dermatologist then??
It sounds to me like she is not taking you too seriously or thinks you could possibly be there just for pain medication. She did order the MRI and that is at least appropriate care since she is looking to rule out MS. and checking for MS lesions. A regular MRI won't show any nerve compression, so she can't rule TN out or in with it.
I"m not defending her one iota, but sometimes docs, especially specialists need to warm up to you. Feel you out, especially when you come in with something that causes extreme pain. GO BACK if you can't get in to see another neurologist easily for her to go over your MRI with you and this time be equipped with A) NOTES of your condition and NOT in your purse, lol and B) another PERSON to go with you for support and tell her about your pain and symptoms so you don't have to feel uncomfortable.
She'll get the message. I can bet she'll be more attentive second time around. It wouldn't have killed her to put you on some neurontin, but since you have to go over the MRI anyway, you should have the results in about a week tops, you have nothing to lose. Like I said bring a friend or family member, a list of complaints and notes on your pain and attack, ASK HER WHAT IT IS and WHAT CAN BE DONE ABOUT IT. Those are FAIR questions your paying her to answer, don't you think? She is getting paid, even if it is medicaid, believe me. Do not feel bad about that. At all.
Please keep us informed. I'm so sorry, very sorry, for your pain and even more for your painful experience. It's hard to get hit like that when your already down and not feeling well.
Many hugs, Julie
Is there only 2 nuerologists in your medicaid list? Can you drive further to a better one in the state?
It is VERY common to take months or years to get proper diagnosis --- but you are already ahead of the game by coming here - and RED is a very great resource guru
Many here have gotten relief from Icy Hot Patches on their face for short periods of time ---- you can buy or go to the library and get the book "Striking Back" and it will give you hundreds of ideas for things to do right now!
Oh I do hope you find some decent help soon Bri, it took me some time and determination to find my excellent neuro. I live in the UK and we are allotted our specialists, my first one had communication problems (this is a nice way of saying he just could not speak or understand English and I regret I knew no Hungarian!) so I badgered my GP to refer me to another, thank goodness he knows I rarely complain, so he did listen and help. All the best x
All I can say is I hope you find a caring doctor ... I too have been told it's not TN by someone who I think has no experience in the area. I hope I don't see him at my outpatient neuro appointment (though I could demand for a second opinion from someone who knows about TN, my family doctor is certain it is TN and the medical doctors when I was in hospital too so all of them can't be wrong!). I am titrating my medication myself until I am pain-free. Hot and cold don't do anything for me in an attack (I think that a heat pack works to distract me however) but do what works for you! And I agree with Nathan 23 ... he has some good recommendations there :)
If you see that neurologist again and feel able to be 'demanding'
1. Ask her if she knows what TN is?
2. Ask to see someone who will have answers for you.
3. Ask to be referred to see a neurosurgeon.
4. Take someone with you for support and let them speak on your behalf if necessary. That way you can get upset and they can talk facts.
In the UK very few medical people know what TN is. A neurologist at one hospital told my mom there was no 'cure' for it, but the good news was the pain could be controlled. Previous to that appointment she had a very similar experience to yours and was so upset that it was brushed aside. This added approximately 3 years onto actually getting something done about it.
The neurosurgeon who carried out the MVD seemed, at first, to be reluctant to do anything as the 'triggers' were not consistent with TN as the pain was constant. Luckily I was at that appointment with her and pointed out that the pain was not constant it just appeared that way as the attacks were close together. That she had been in pain for so long that for her to identify the 'triggers' was impossible.
The neurosurgeon also told us that TN was relatively unknown in the medical world and only consultants and those directly involved in treating it were aware of the surgical options.
The two hospitals who treated my mom are 10 and a half miles from each other. One said she'd have it forever, the other said lets get rid of it.
Jane, you have bought back memories for me. I was quickly diagnosed by an A&E Dr from MaxFax.she told me I would need to be medicated for the rest of my life. I had a follow up And the first thing a new Dr said was " we need to get you off all these meds". I was in dismay and did not know which way to turn. Thank goodness for the nurse who called name back and took me into the head of departments office for a proper talk. It was a blessing when they discharged me to Neurology.