Anxiety, stress,frustration

Warning, ranting and venting

Tomorrow is my monthly appointment with my primary care.

This will be the first one since the neurology appointment where I was told possible hemiplegic migraine and basically left hanging by my neurologist.

I am terrified that my primary care could lend credence to the so called expert and leave me hanging as well. Neuro said because my csf has no o-bands that rules out ms. Everything I've read says that isn't true.

Based on a conversation on the migraine board,I intend to ask about further testing for auto immune issues.

I also intend to ask for a new Neuro referral. I am so tired of feeling like I have to scream and demand to be treated properly. I am struggling each day to function. I can't keep on without some answers, without some tool to fight with.

If not for my fiancé I would just give up. He is my only reason to keep going. He gives me hope and strength to carry on.

I am just frustrated with the medical community at this point.

I apologize for ranting. Just needed to let it out somewhere and this seemed to be a safe place.

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12 Replies

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  • Hope you feel alittle better for letting off steam. It's not acceptable when doctors or anyone won't listen to you. At the end of the day, no one knows your body like you do, it's good that you have a very understanding fiancé. Let us know how you get on, hope your appointment goes well and they listen to what you have to say, take care Jimeka

  • Eva, I hope you feel alittle better for letting off steam. It's annoying when doctors etc don't listen to you. Nobody knows your body better than you. Hope you get the answers you are looking for. Let us know how you get on. I hope if your current neuro won't listen, you can find one that will. Take care Jimeka

  • Sorry for 2 replies, first one didn't register, then they both came at once. X

  • So my primary care is as wonderful as I always thought! She's referring me to a different neurologist. She also decided to give me solumedrol infusion and a prednisone taper. She did her homework for me lol. Also found that my last fall caused 3 hairline fractures in my left foot (my good one!) .No wonder I've been struggling to walk! Yay me! Now I have a walking boot on my good foot! No work for a week! Thank God for a caring and observant doctor!

  • My wonderful neuro moved 5 states away. New neuro is making me go through all the MS test again that I went through 2 years ago (including another LP). Why?? B/C I only have 3 tiny lesions in my brain but have 4 sizable lesions in my spine. He feels he has to rule out NMO even though the blood test came back negative. The jury is still out on whether I like this new doc. I hope your PCP is good and listens to you. Ask them specifically what doc they'd want to see if they were experiencing your symptoms. Hang in there please!!! There is help out there.

  • I had normal CSF it did not mean no MS. MRI was definitive. I asked for the spinal (lol) because I wasn't convinced at first--felt too good...

  • Hi Eva1981 lm sure we are all happy that you feel comfortable and safe enough to rant and rave here. We all have our bad and then the really really bad days.

    Depending on your insurance, you should be able to get a second opinion. And if you can go to an University nero center. In my opinion they have the most up to date info. Mine is 2 hrs away but worth the drive.

    Make a list for your dr appt so you can remember all the questions you have for him. I always forget :) Good luck today!

  • Thank you all! Letting off steam helps some.

    I have typed up a list of things to discuss with my PCP today. My handwriting is illegible anymore. I am right handed and my right hand is totally numb.

    Never before have I had a doctor make me feel like they were dismissing my problems. I left the neurologist appointment feeling like I had been torn down to lower than dirt. After him telling me less than a month before that I probably have ms. After him telling my PCP to provide education about ms and treatment options and "prepare"me for the diagnosis, to be talked down to the way he did at this last appointment is unforgivable. I feel like he just didn't want the hassle of dealing with my problems. The only thing he offered was botox and once I refused that,it was basically "well it'll likely resolve itself with time. Come back in 3 months. " I refused botox because I don't feel like I have hemiplegic migraines as he suggested was possible. I truly believe that was a way to get more money from me and my insurance for himself. I understand that there are certain criteria for ms diagnosis. I also understand that ultimately it's a clinical diagnosis made by the opinion of the neurologist. I have lesions. I have clinically observable signs,not just my report of symptoms. I truly feel like there are things that could help get my symptoms to let up but have been told that unless diagnosis is made they will not offer them.

    I work full time but I am not sure for how much longer. The last 3 days, I can barely walk. I have fallen several times in the last week. If that continues, I won't be allowed to work. I can't afford for that to happen. That's why I am nearly begging for someone to figure out what this is and give me some option to try to stop it. I was previously very active and now I barely manage to drag myself home after work. Weekends consist of trying desperately to rest and regain all the energy I can. I rely on meds to ease cramps and spasms and nerve pain. I don't feel like I am fully myself while taking them but I can't stand the pain without them. So I continue using them despite hating to rely on pills to exist. I seriously wouldn't be able to manage without them. I tried not taking them for a while. I was contemplating ending my existence because it was just too painful without something. My fiancé went and got my meds and basically made me take them. Haven't tried to do without them again since then. I only take what I absolutely have to.

    I truly believe that I do have ms. My half sister who I am not close to has ms. Once ms was mentioned, I contacted her (we hadn't spoken in years). I described my symptoms and she told me that she's had every single one and others too. We actually compared MRIs. I have more lesions than she does! I don't want this. I've cried and prayed . I would love to believe that I don't have ms. I know that I have something and that ms is most likely. I intend to demand a second opinion neurologist referral. There aren't any university medical facilities near me. The closest is 4-5 hours away. I can't manage the drive that far. I will post later about what my PCP says/does. Until then, I will just pray that she has some idea how to proceed.

  • I was turned away by five doctors before I got a family friend to request an MRI from my neurologist that he knew. I was told I was crazy and that it was all in my head. Don't give up!

  • Oh and I forgot to say that after the neurologist ordered the MRI of my brain it lit up like a Christmas tree

  • My primary care is as wonderful as I always thought!

    She's referring me to a different neurologist.

    She also decided to give me solumedrol infusion and a prednisone taper. She did her homework for me lol.

    Also found that my last fall caused 3 hairline fractures in my left foot (my good one!) .No wonder I've been struggling to walk! Yay me! Now I have a walking boot on my good foot! No work for a week! Thank God for a caring and observant doctor!

    My brain and cervical spine have lesions. I didn't have any o-bands so neurologist said it isn't ms.

    Had my final IV of solumedrol yesterday. Start prednisone taper today. 40 days of very very slow decreases in prednisone. I am very sensitive to prednisone and in the past have reacted badly if decreased too fast. I have asthma that doesn't always respond to inhaled meds so have had a lot of prednisone tapers over the years.

    I am hopeful that this puts my symptoms into remission.I've been in a flair since February.

  • Not having O-Bands doesnt eliminate an MS diagnoses so hopefully your new neurologist will give you some clarity!