So many symptoms. Too much ignoring by physians

Posted , 2 users are following.

Apologies for the long post.

I have been dealing with the diagnosis since 7/2017 but noticeable symptoms consistently since 4/2017. My doctor initially tried to say that I was depressed but depression does not cause numbness, nausea, and excrutiating headaches amongst other symptoms that no medication helps. It was my optometrist who realized that I may be dealing with papilledema. He literally saved my life because he let me know that I had a valid concern that needed to be addressed and not dismissed.

I am tired. Emotionally and physically. For the last four months, I have been in bed and had to leave work on STD to have treatment due to worsening symptoms. I have had a lumbar puncture, taken Diamox, Topamax, and Lasix, as well as lost weight since being diagnosed in 7/2017. I haven't been able to tolerate Topomax or Lasix. I went off of all of the medication due to not being able to deal with the side effects. All of the weight that I lost, I gained back since being home on bed rest. The Diamox is the lesser of the three evils but causes my heat intolerance to be worse (even though its already bad on its on without meds) and causes incontinence at times due to having to drink water because of excessive thirst. I am being put back on Diamox because my vision isn't improving and my optic nerves are still swollen. My visual field is decreasing. The other symptoms are horribly impairing my ability to function. I am worried about being able to return to work full-time as it will be challenging because I am apart of management and I will need to be able to function at a high level in order to lead my team.

My papilledema and IHH is considered chronic now. The neurologist has stated that there's nothing more that can be done and surgical intervention is the only option but I do not want to have a shunt inserted because it is a beast of its own to deal with. Most people who have had shunts placed, haven't had a lot of relief from the procedure or needed a revision. I don't want to deal with that as I have had other surgeries in the past and do not feel that I can deal with the shunt and aftercare it requires. I have been referred for bariatric surgery to loose weight to help with the symptoms and hopefully stave off further vision deterioration. I will only do a shunt if absolutely necessary.

The pain, fatigue, memory loss, confusion, anxiety, ringing in the ears, heat intolerance, light sensitivity, nausea, and other symptoms are so hard to deal with. What hurts the most is doing all of this alone. I have no support and have recently ended all communication with my toxic familial and personal relationships because it has never been healthy, has exacerbated my stress levels, and I finally realized that I need all of my energy to be positive to assist me with dealing with this. I have come to realize that my well being is more important than anything in my world. Anyone that doesn't understand will be okay.

I know that I am not crazy even though a lot of people think that I am because this condition has turned my life upside down. My constant pain, anxiety, insomnia, and other symptoms have made me extremely unpredictably emotional. So many days I am irritable because of the pain. I am withdrawn because this is hard to deal with. Many people assume that I am seeking attention but that is not the the case at all. I am terrified of what else to expect with this condition because at times my treatment team dismisses my symptoms or say nothing because they know that this is just the beginning of a ride down the rabbit hole.

I would like to know how you have been able to deal with this condition and what things have helped with you advocating for the best treatment from your providers.

Thank you for reading and I wish you a beautiful healthy day.

0 likes, 2 replies

2 Replies

  • Posted

    I had a relatively similar situation with having my primary care physician listen to my symptoms... Over a year and a half starting in 2016 I had been going to her with complaints of not only difficulty losing weight (which is a whole other diagnosis that I begged but she wouldn't test for that ended up being an issue) but of starting to have limitations with how much I could work out because I would get light headed, dizzy, weak...she told me I was sensitive to being overheated. -.- Then I started losing my vision in my right eye a little bit at a time. At first it wasn't all that often so I thought it was attributed to being overheated, BECAUSE THAT'S WHAT MY DOCTOR TOLD ME. Well, I go back to her a few more times with the same symptoms but they have gotten worse. at that point I could do even less at the gym than I was doing, I was having complete loss of vision in my right eye about every 10 minutes for about a minute each time... but still she only noted in my profile "abnormal weight gain," and "depressive episode."

    To her, everything was just me making it up...looking for attention... This past August, at the point of most concern, all I could do for physical activity was slow walking for about 30 minutes before I would get too light headed to continue and my vision was cutting out almost every 5 minutes.

    I worked out with my father and he must not have ever mentioned my issues to my mom but since all I could do was walk at that point she came to the gym to walk with me while my dad continued to do our normal routine I could no longer take part in. This was when my mom found out about my troubles and demanded I go to my optometrist. So, she took me. The first week of September, 2018 my childhood optometrist dilates my eyes, takes a look, and asks me if I've been having headaches... I laugh and told him, "I got a headache once and it never went away." He immediately got a worried look on his face telling me that both of my optic nerves were swollen, in layman's terms, an 8 on a scale of 1-10 and was surprised I could see at all. He went into his office and personally called a specialist to get me an appointment the next day... That's when 'it hit the fan. I saw the ophthalmologist the next day, the following week I had an MRI and an MRV to rule out a brain tumor or blood clots, and the week after that I had the pleasure of having my first spinal tap... my opening pressure was more than double what mine should be.

    I was stuck in my bed for 7 days because of the spinal headache...I couldn't stand up, I couldn't sit up, walk, have the lights on, and everyone had to whisper to me because everything was too loud. It was the worst pain I think I've experienced so far in this life.

    I'm currently on diamox...the side effects aren't ideal but I've been managing them okay. Definitely thirsty. Constantly...with no relief. Still having headaches when I try to exert myself at all, even just basic house work, going up stairs, walking at a moderate speed.

    When I realized that if my primary doctor had listened to me in the first place this wouldn't have gotten as bad as it did and as debilitating as it was/is. At this point, even as paranoid as it may seem, I don't trust any doctor until they prove to me that they even care to figure out what the issue is.

    I ripped into my primary doctor after she advised me to come to see her after I was diagnosed by SOMEONE ELSE because she was requested to order a bunch of tests and she wanted to check on me as well... Telling her that everything I told her was primary symptoms directly correlated to what I was diagnosed with and that if she had actually listened to me, seriously listened to me, then all of this could have been avoided. I refuse to see her and have discussed my displeasure with the practice's lead physician.

    Now any time I go to a doctor, or see a doctor I haven't seen before, I question everything and will make a scene if I have to to advocate for myself because this is not going to happen to me again. How dare doctors sweep their patients under the "depressive episode" rug when they are presenting with quite apparent symptoms.

    You must be your own advocate and make your voice heard or you will get swept away.

    • Posted

      I am so glad that its not only me whose experienced this.

      My neurologist completely dismissed me when I told her that my hearing has been affected. She stated that it doesn't happen. That's a lie. I can't tolerate any loud noises, have a sign on my door asking people not to knock, and any type of buzzing or bell sound drives my pain to excrutiating levels of piercing pain in my head. When the pain isn't there, the sound of my heartbeat in my ears scares me so bad. So I listen to music to take my mind off of the sound and to calm myself down.

      The neurosurgeon that I was referred to was so arrogant, I haven't seen him since the initial visit. He only wanted to drill a hole in my head and place the shunt. When I asked if there was another option to place the shunt he said no. That is a lie. A stint can be placed through the abdomen or lumbar area. He gave me no other option.

      I am so tired but can do nothing more than lie in bed and pray. I am about to begin mental health treatment because between the increased anxiety, pain, frustration, and paranoia, I am about to go insane.

      I hope that God will help us all because if people really knew what this condition does, they would not assume, judge, but most of all dismiss this condition as nothing.

      Thank you for listening and sharing.

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