Sara, Sleopard41 gave you some good advice...early diagnosis means a very good outcome with treatment and remission of whatever this might be...I understand your fears, MS with TN is something I have seen googling over and over again in combination. I am keeping a vigilant eye on your posts, you have much support here, I giving you a "big hug" today...Sharon
Sara said:
So I still have the tingly, buzzing, burning, prickly, aching feet, legs and hands. Most recently at work I had the strangest experience. It felt like a match was put out on my cheek, it started to burn but went away pretty quickly. But then I started to feel really confused. I couldn't do my job. I work at whole foods in the vitamins department and I was just trying to check things off an invoice and for the life of me I could not. Then my hands started to tingle. Eventually it got better but I felt off all day. I started thinking back and I've actually been feeling kinda "stupid" for a while now. I've just been brushing it off as being a tired mom but with the new symptoms I'm starting to wonder if its connected? Obviously I've googled and MS is something that keeps popping up and i know it can present with TN. I'm just very grateful my neuro appt is Wednesday because I'm very worried that these sensations have persisted for weeks now.
Sara, I’m sorry to hear that, but sadly I’m not surprised
Some docs just aren’t going to take us young mothers seriously, it’s sad.
But know we are here for you, we understand you don’t want to suffer.
It’s extremely frustrating but stay vigilant.
Good luck!! Perhaps you should go back to PCP and see where they direct you for frybromyalgia.
Yes, Sara, I agree with the above…I am sorry, but not surprised. Do seek a new neuro, but have the MRI ASAP…then take the film to the new neuro, just make sure the MRI ordered is intensive enough…Fiesta or contrast, whatever, Red does know, or you will be paying for a whole new one at the next neuro appt.
I know how defeated you must feel, but arm yourself with info from here and find a neuro with a specialty in TN…my advice, sorry…
Good luck…
Saber
Sara said:
Hey everyone. Saw the neuro. He pretty much wrote me off and Atypical Facial Pain and said I have too much anxiety. He gave me a script for Klonopin, said there is not much else he can do if I'm breastfeeding. He also thinks my tingling is anxiety but ordered an MRI with MS protocol and to check for a brain tumor. I would agree with him about the tingling being anxiety if it wasn't 24/7 non stop and getting worse by the day. I feel pretty defeated and not taken seriously. I'm going to get the MRI but I'm also going to find a new neurologist. I really can't do anything else at the moment, like he said, since I'm breastfeeding and until this becomes totally unmanageable I'm going to continue nursing my baby till he is ready to stop. Someone on fb mentioned fibromyalgia due to the leg pain and tingling. I'm curious how one goes about getting a diagnosis. I know there is a pressure points test but who would I see about that? Anyone know? Should I head back to my PCP?
Yes, that is good. I would definitely do MS protocol…that is what they did with me. My neuro told me that it was quite likely I had MS, due to my age at onset of symptoms, etc…I did not have it, thankfully, but they have medicine protocols for it now that are far superior to our TN protocols.
But, find another neuro, stat! My friend, we have all had bad neuros…at least you know from the first visit!
Sara, I am glad he ordered the MRI, hopefully with contrast. Not a nice experience being seen as a new mother with anxiety. I am an old lady 57, and this facial pain gives me anxiety period. We are all under stress, stress does not help any of the dx's for facial pain. I am seeing so many here who do get dx'd but are no more further than I am with treatment. Hugs today. Sharon
Sara, I'm so sorry to hear about your experience but unfortunately we have all been there. I've seen about 7 different kinds of drs and I'm still looking. I used to get really upset in the beginning because we have such faith in the medical community and in doctors in general that its disheartening and frustrating to feel like you are slipping through the cracks. I was told my symptoms were because of depression, I just set them straight or ignore them and move onto the next one, I wont give up! The support here is wonderful, hang in there, you are on the right track getting the MRI. Also i recommend you keep a pain journal, just a few words a day or a number of a scale of 1-10, it really helps when you are looking back xx
Ok, saw my neuro and he is so honest with me. He wanted to see if a surgeon would do Gamma Knife or RF for geniculate neuralgia for me. Told me this thing is not found on MRI, even the 3-D, but he believes I have it. I don't want these procedures as everything I have read about them if you are atypical usually does not work and can make you worse. I think I am on the wrong page, need to go to GN, but you girls and I have been responding to each others posts. So what is next, I am on a low dose of gabapentin, have been since 2000 for neuropathic pain in my legs so we are going to try and double the dose and see if I can tolerate it. Wish me luck, my poor legs will probably swell up! But I have read a lot of posts of others responding to this med, of course others can't tolerate it. Also going to try to get a moving MRI for tmj as I am post op '86 tmj joint surgery, that joint is 1 mm from the trigeminal nerve and that one can cause ear pain too.
It is my first grandaughter's 1st birthday today, so these events always change how I perceive pain, JOY! Sharon
I hope this finds you well. We have a new member on the TN forum who is looking for information on clomipramine as an antidepressant which might possibly help TN as well. Do you have any suggestions for haach76?
I understand how you feel! thank goodness someone had the idea to make it into a separate wikipedia page! Mine is bilateral as well.I can go for days feeling fine and I begin to think its all in my head and then i get flare ups which remind me that no unfortunately this is very real. My pain came out of the blue and intensified very quickly over a week of panic, scrambling to see all kinds of doctors, it was chaos and very scary because no one seemed to know what was going on and I finally diagnosed myself through wikipedia. The pain got so bad I was admitted into the hospital until we got it under control with gabapentin and clomipramine (an antidepressant, aka anafranil). It took a while for the meds to begin working properly but six months later I'm still here and knock on wood, doing well. I've travelled with friends, continued with graduate school, enjoyed things I like doing again but believe me six months ago i would have never imagined myself here today, so hang in there, stay positive ( even though its really hard, i know!) but the right mix and dose of meds can make all the difference.If you feel like the doctor doesnt get you, try not to get discouraged, just keep looking for someone else who does. It must be so tough dealing with all of this as well as having a baby to take care of, I really hope you find more relief soon, keep us updated! hugs
