The Old & The New

On Friday I have an appointment with a new neurologist. I haven’t written a post about my experience at Cincinnati’s Children Hospital in late November, because it was one of the worst experiences of my life, but November 29th is the last time I went to a neurologist.

It wasn’t very long ago, but I’ve been trying to forget it ever since. I had such high exceptions that they would have a better treatment plan for me, but their only suggestions were to go on a mediation I’ve already tried (and it failed), and drink Gatorade when I get migraines. They literally told me not to take pain meds, but instead drink Gatorade. There isn’t an eye roll big enough.

I may do a full post on being there if anyone is interested, but for now that is my recap. Due to that horrific experience, I’m scared to try another new neurologist. I’ve been to four now, and none have been very helpful. One never answered the phone, another neurologist saw me twice, and then said, ” I can’t help you;  you need to go see a specialist.” While she was nice, it was annoying that after trying to establish her as my neurologist we had to move again. The third one was the guy she referred us to. He prescribed me insane amounts of medication, and never fixed my problems, plus he had a huge god complex. And of course the fourth was the one at Cincinnati’s Childrens.

Due to all of this, I really don’t want to see another person, just be told the same thing. Drink water, exercise more, and take these preventatives that don’t work for you. I also have other issues beside the headaches, but no one ever wants to address them. The difference with this neurologist from the other ones is the fact that she is not a pediatrician, and does botox, which is something I’m trying to start. She does see minors, but doesn’t specialize in them, and I’m hoping that will be a positive thing, since I’m seventeen.

All I can do is stay hopeful, but if I hear “lifestyle changes” one more time, I may tell someone to shove them up their ass. Sorry to be so crass, but I’m really tired of hearing the same thing over and over. I know many people are going through the same thing, so let me know your story.

Lots of Love (and wishes for better days),

Alyssa

 

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22 thoughts on “The Old & The New

  1. I’ve been to many, many doctor’s for my many, many invisible chronic illnesses. I’ve gotten lot’s of diagnoses by having undergone many tests, but there is still something that just is not right. I fainted. I was hospitalized for 6 nights. In the hospital I was seen by this amazing neurologist. He sat down next to my bed and asked me questions other doctor’s never asked me about, like my pregnancies, did I have miscarriages, etc…..within 5 minutes of meeting me for the very first time, he said there is something about my eyes that isn’t right. He ordered tons of labwork and tests. He told me to come see him in his office 2 weeks after I got out of the hospital. I asked him, “if all this lab work and all these other tests come back okay, you’re not going to give up on me are you?” He said, NO………….I’m going to test and test and test and test until I figure you out. I’m feeling very hopeful for the very first time in a very long time. I went to see him in his office. We talked for about 2 hours. He said he was going to go home and start his homework. I’m patiently awaiting a phone call from him to see what he comes up with or what tests he wants to do. He said I do have dysautonomia, but if you know anything about that, that could be a number of things. I had given up on going to anymore doctor’s. I have my established doctor’s for each specialty, but I just need this one other doctor to figure out the BIG picture….the big, main autoimmune disease that is causing all these other diseases and conditions I have. I was just finally in the right place at the right time with the right doctor……………………….You are young. You haven’t been on this journey as long as I have. Don’t give up…..You will run into many idiotic doctor’s along the way. For some reason they can’t simply say, “I don’t know. I do not know what is wrong with you.” But, they would hate to admit they don’t know so they choose to treat us like shit………………..There are many uncommon diseases that any given doctor might not know about, but you would think the mindset would be, “I don’t know, but let’s do this next.” Instead of I did one or two tests on you or I did a bunch of lab work on you and everything is fine and send us on the way, when they know damn good and well there is something going on, they just can’t figure it and can’t admit it. It’s easier to treat us like we’re making this shit up or something. So, sorry, I didn’t intend on writing a book, but my main point is: DO NOT GIVE UP! You are young. I’ve been sick my entire adulthood and it’s taken me all this time to get to this doctor. Your doctor is out there. Go find her/him……try not to get too discouraged. Expect the worst and hope for the best, that way when they don’t know and they don’t intend to try to figure it out, you won’t be disappointed……………………….You got this. You are a fighter. Chin up. March onward. Your day will come……………………trust me, it will………….when? could me this month, could be 8 years………………….Don’t give up………………..Take care.

    Liked by 1 person

    1. Thank you so much for your comment. I’m trying my best to keep carrying on, despite my lack of proper diagnosis as well. With all the crazy symptoms get aside from the headaches I think it’s very clear that there is something else wrong that they have yet to find. My GP has done TONS of test, no where near the amount you’ve had I’m sure, but still a lot for only doing this five years. I hope this phone call is something that will be life changing for you, and this doctor will come up with a better treatment plan. Happy holidays and thanks you for reading!

      Liked by 1 person

      1. Hi Alyssa. I know, it’s really hard to keep carrying on, and to be getting no answers, but if we give up, we’ll never find that doctor that will figure us out. So, I do understand your frustration. I would suggest you take pictures of anything weird or different, such as rashes, urine, poop, red and swollen joints or other body parts. Keep a log of your daily symptoms, note what you did that day and how long the symptom lasted or if you did something and it helped. The more information you can gather up to take to your appointments, the faster I think you’ll get some answers. Write down anything and everything. I check my blood pressure at least twice a day, lying down, sitting, and standing. I check my Oxygen saturation randomly or when I’m having trouble breathing from my asthma or other illness. I track my body temperature because it’s always low, unless I have a low grade fever or higher. You know how it works…………….when you get to your appointment, your temp. is normal, BP is normal, everything looks fine. We never have the swelling or redness or anything else on the day we’re at the doctor’s office. Of course, maybe after we get back home. But, all that kind of information will really help the doctor’s. Five years is an awful long time to have no answer’s. I did get some diagnoses in a timely fashion, but you know something is off, so keep track of everything. Any time you get lab work done, ask for a copy for your records. They are yours to have. If you are in the ER they can give it to you right then. Get as many medical records as you can get because at some point, those records will be too old for them to keep. They may be in a basement somewhere and not easily accessible. I’m not trying to tell you what to do. I”m just trying to help you because I didn’t think to even do any of that until I pooped and there was blood. Sorry for TMI, but the week before I had gone to the ER and told them there was blood in it and they did a CT scan and said everything was fine. A week later, it happened again. I don’t go every day……So, I thought, they are not going to believe me because I was just there. So, I took a picture. I thought if that’s what I have to do for them to believe me and to figure out why there’s blood. Turned out I had Ischemic Colitis, internal bleeding of my intestines…………..So, for at least a week, I was going about my business while bleeding internally……………………..Just go with your gut. If you have to go to a different doctor or ER, do it. It could be something serious, like this. You have to be your own advocate because no one else is going to do it for you. I sure hope you can get some answers soon and get some relief. Hang in there, hard as it is……………………………I go thru these “I”m giving up modes” but that’s not a good thing to do. Take care. Hope you have a better New Year and get all the answers you need. Peace out! 🙂

        Liked by 1 person

        1. Thank you for your incredibly kind words! I have done some migraine calendars but nothing more. I think I’m going to try this out, so thank you for the advice. I’m always looking for advice from other people with chronic illnesses since doctors haven’t been able to do much. I’m sorry to hear they didn’t take you seriously when something very serious was going on. I hope you are doing better now, and have better health in the New Year.

          Liked by 1 person

          1. Thank you. And, no worries. I love helping people that are young or new to being chronically ill or both. I have a very long list of diagnoses, and I’m a nurse. I haven’t worked as a nurse for a long time, but I still have my knowledge and it sure has helped with being ill because when doctor’s are using all these medical terms, I know what they are talking about most of the time. But, anything I say or write is not medical advice, it’s just what I think or what worked for me. I’m not a doctor and I never try to be one. When I’m in the ER or the hospital, I don’t even mention that I’m a nurse uness I have to because then they act like I know everything, and I don’t. I know about a lot of stuff and a lot of it I learned by myself being sick. No one gave me any tips or anything and it’s been a long, difficult road. I’ve been sick almost my entire adult life. So, it’s my mission to help as many other living souls as possible. I sure hope you get some answers real soon. Like I said, the more information you go armed with to your appointments, the better. I just give advice I think might help and everyone can do whatever they want with that advice. It’s really heartbreaking that you are so young and having to live this way. And, unfortunately, those of us with one chronic illness usually have several other co-morbitities………..I will pray that won’t be the case for you. So, take pictures of that poop, girl!!! 🙂 lol lol you gotta do what you gotta do. Have a “good” as possible weekend.

            Liked by 1 person

  2. Hi Alyssa
    I’m sorry to read about your headache at 17.
    Mine started at 17 as well, and I’m now 36. I haven’t had a day without headache since it started over 19 years ago. I have seen NUMEROUS neurologists and pain management specialists. 99% of the doctors I’ve seen have no business being one. I hate them. At the moment I’m happy with the one I just started seeing about 2 months ago at USC in Los Angeles. She seems genuine and caring, which is a rarity in that world, but I’m not keeping my hopes up. Although I don’t plan on ever giving up, I also learned a long time ago to not expect anything… I found it hard to recover from failed expectations.
    I hope you’ll find someone who cares soon. [[[Hugs]]]

    Liked by 1 person

    1. Thank you! I got sick at 12 so most doctors just put it down as hormone changes with puberty. My hope is now that I’m nearing adulthood people will take me more seriously. I’m sorry to hear you’ve been suffering for so long, and I sincerely hope you find a treatment plan that works for you. I’m glad you found a doctor you like; hopefully she will be the answer you’ve been looking for, for so long. Thank you for reading!

      Liked by 1 person

  3. I have specialists galore. A neurologist, vascular surgeon, pain management specialist, urologist, gastroenterologist, OBGYN, and GP. I have epilepsy, a rare syndrome called nutcracker syndrome, pudendal neuraligia, and undiagnosed chronic pain. I’ve never been “healthy” my main thing was advocating for my health and managing it the best I can. At times I’ve wanted to give up and stop looking for good doctors because a lot of them can be arrogant and a lot of them act like they know what they’re doing when in reality they had no idea what to do with someone like me. But everytime I gave up…I got back up. And I’m glad i did because i found some good doctors. It’s okay to have feelings of hopelessness, but just keep trying. Not every doctor is going to be able to “fix” you and not every doctor is going to have answers especially if you’re a complicated case. But the more you educate yourself and the more you keep searching, the more chance you’ll find the right doctor. I know you mentioned Cincinatti, I live in Cleveland, which is about 5 hours from CInci. The Cleveland Clinic is one of the top hospitals in the world. I know it may require some traveling, but it may be worth it in the end. Also I think you should check out my blog more specifically the blog entitled :Doctors VS Patients.

    Liked by 1 person

    1. I will definitely check out that post! We applied to the Mayo Clinic but got rejected, so Cincinnati was our second choice due to me being a minor, but Cleveland clinic may be something we need to check out. I’ve been told I’m a “head scratcher” and all the things they’ve tried “should” work, but the more I’ve turned to the internet I’ve realized there are tons of chronically ill people like me who can’t seem to get an effective treatment plan or a quality diagnosis. Keep being resilient and advocating for yourself. I hope you can find something that works for you. Thank you for reading!

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      1. Yea, unfortunately the brain and well the body is so complex that it takes times and even sometimes doctors can’t even figure out what’s wrong. However, medicine is ALWAYS advancing, which is what constantly gives me hope. So as long as you have hope and keep educating and advocating for yourself, I have confidence that things will be okay. Wish you the best!

        Liked by 1 person

  4. I remember getting a lot of the same BS from pediatricians when I was a kid too. 😛 It’s like they assume anything wrong with you must have been a choice you made, because obviously every kid is 100% healthy and just needs to lay off the candy. Ugh. I hope your next experience is the one that turns things around. ❤

    Liked by 1 person

    1. Thank you! I find it odd how many doctors attribute chronic illness to laziness or something your doing wrong. No one asks to be sick, yet they act like it’s our fault. Thank you for validating my experience!

      Liked by 1 person

  5. I have only read this post so I don’t know your past, only what I’ve read here.
    You are having bad headaches. Migraines I assume from what I read.
    You are trying to see a neurologist who will help you.
    Have you found a neurologist who specializes in headaches? There aren’t a lot of them out there, but if you can find one it makes a huge difference. They don’t just tell you to change your life style. Actually I’ve never heard that from my doctor. We talked about it a bit, but she knows I’m doing all I can do. Besides I can’t drink Gatorade, it has too much sodium. and that will cause me to have vertigo, so there. (sorry them telling you to take Gatorade instead of meds made me mad).
    I have chronic migraines, I’ve been seeing a specialist for years and I still have chronic migraines. We’ve tried everything. Now I try things as they come up to try. If they have clinical trials that I can do, then I will do that.
    Don’t get too excited about Botox, it may help, but it may not. Read the efficacy on it. It really doesn’t help much more than placebo. It helped me for a little while, then it stopped working.
    I also have persistent daily headache. meaning I have a headache all the time. I’ve had a headache since I was 11 years old. I’m 53 now.
    Treatment for my headaches have gone up and down. Things will work for a while then it will stop.
    That’s a small bit of my story.
    my suggestion for you is to find a specialist if you haven’t already.
    if you have, golly I don’t know….find a better one. LOL
    I know if I don’t have a doctor I believe in or trust, I fire them. There are too many doctors out there to put up with that stuff.
    I know what it’s like to have high expectations for an appointment and it just be a bust. I’m sorry about that. It sucks big time.
    Good luck on this.
    I look forward to hearing more about it.

    Like

    1. I went to a neurologist that specialized in headaches, but he was the one who pumped me full go drugs that had crazy side effects and never helped me, plus he had a huge God complex, and was incredibly rude to my mom on multiple occasions. Needless to say – we fired him. At this point I’m seventeen so going to new pediatric neurologist doesn’t make a lot of sense, but the majority of adult neurologist won’t see me because I’m still technically a minor. I try to be cautiously optimistic but I know the likelihood of botox working for me isn’t high, since my migraines haven’t responded to any of the conventional therapies. Thank you for your comment and sharing your story – it makes me feel less alone! Happy holidays!

      Liked by 1 person

      1. I just realized how sad my story had to be for you. No, love, you are not alone. But that doesn’t mean give up. A God complex is no good…yep, fire him.
        I’m afraid the dr I have now has given up on me. That’s not a good place to be. I don’t think we’ve tried everything.
        There are a lot of treatments out there. We can’t give up hope.

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        1. I sincerely hope your doctor hasn’t given up, but I have had many give up on me too. You deserve a doctor who will study, and read, and try everything they possibly can to help you. Migraines are hard to treat (unfortunately for us) but new research is always being done, so hopefully they will come up with something that works for us long term!

          Liked by 1 person

          1. Thanks. The last time I saw my doctor she increased one med slightly, told me to remember I have chronic migraines, if I find any studies we should look into them, come back in 3 months.
            I have migraines more than 20 days a month.
            Yep, when she told me to look for studies I knew she had given up. I take it as, “I’ll try things if you bring me the info”
            She’s given up. And there isn’t a better migraine dr in the area.
            Luckily we are trying to move from here. 🙂
            We aren’t giving up!

            I do want to tell you I went through times when my migraines were better, I don’t know what was different. But I’ve had some better times. I’m pulling for you to have a better time of it.

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          2. Thank you. I hope your move will bring better access to quality medical care. I seem to cycle in and out of my migraines, and I haven’t found a reason for it. I’ll be in extreme pain everyday for three months, and then I’m significantly better for two weeks. I’m grateful for the time I feel good, but these cycles don’t seem to make a whole lot of sense. Hopefully you’ll find a study and it will work for you!

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