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Arachnoid cyst or autoimmune disease
Im going on 45. I've had an arachnoid cyst for years, probably since I was born, thats what a few neruoroligst told me years ago. They also told me that they're harmless. Harmless?
I've had seizures since I was ten years old. They started out as partial seizures and in 1999 I started having grand-mal seizures. I still have both kinds of seizures. I have hit my head on on concrete hard floors so many times that I can't count. I have been taking gabapentin and Lamictal but nothing is working . So I decided to see a
neurosurgeon. Because not one neruoroligst ordered a Mri on my brain. I have pressure on brain to the point where my skull swells up.
I'm losing my vision in both eyes, I'm having intense internal vibrations, and severe migraines. He looked at my past Mri's. He said arachnoid cyst can become dangerous. Also, I have a small mass of near the left of my brain(which I never knew) . In May I tested positive for an autoimmune disease. I still don't have a diagnosis. I believe it's neurological. The last seizure I had was in May. And it was the WORST seizure I ever had, according to my partner. She's been with me for 14 years, and has witnessed every seizure I had. She said, my face blew up and it was as red as a beet. Usually I foam from the mouth when I have a grand-mal seizure, but this one, she said it was more like slobber. Very stringy. Ems came and stayed with me for an hour. They were honest and said that the hospital would probably send me back home. Which is what they always do. I only have Medicaid. I know that is why I get treated like I do. From the doctors and the hospital. The neurosurgeon was my life saver. He ordered the correct Mri's on my brain and back. I also suffer from Spinal Stenosis and osteoarthritis of the spine. I say correct because the neruoroligst I saw last, didn't order a Mri on my brain. She ordered a Mri on my back. But it was denied by my insurance company. Because she only put down, lower back pain. Obviously she did not look at my past records. I'm curious if anyone else is suffering from a neurological disorder, causing vibrations, and external tremors. I don't see a rheumatologist until August 19th. I don't know how much more I can take. I've lost over half of my hair. I have extreme numbness, tightening of my muscles, and or loss of muscle control,muscle spasms, and neuropathy. I'm so grateful for the neurosurgeon that I met with. He truly cared for me. If there's anyone who suffers from these symptoms, from a arachnoid cyst or autoimmune disease, please reach out.
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Hello @sally3240. You have sure been through quite a lot coupled with what seems to be a lack of support and proper diagnosis. I am glad to read you have an upcoming appointment with a rheumatologist in August, however, I am sure that date feels like a lifetime away when you are going through so much.
There are several members who have shared their experiences with internal vibrations and are talking about them in this discussion if you're interested in connecting on that symptom.
- Internal Vibrations: https://connect.mayoclinic.org/discussion/internal-viberations/
There is also a separate discussion on arachnoid cysts that you may be interested in here.
- Arachnoid Cyst: https://connect.mayoclinic.org/discussion/arachnoid-cyst/
What does your August appointment entail?
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2 ReactionsHi @sally3240, I am very sorry to read your post. I agree with @amandajro, it seems you have not received proper support. I know well how this feels, as I had this experience. I went through 10 doctors until I found a caring one for my refractory epilepsy. DO NOT GIVE UP!!!
You said that you have been diagnosed with autoimmune disease. There is a book I have read, which has inspired me much in my epilepsy treatment and helped me in my battle to control my seizures and have a life with quality. It is called Brave New Medicine: A Doctor's Unconventional Path to Healing Her Autoimmune Illness by Cynthia Li MD. Perhaps it also helps you?
All the best to you!!!!
Santosha
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1 ReactionHi, no I haven't the proper care; u
Thank you for reaching out to me. It does feel lonely at times. Alot actually. I don't have much support. I'm also a widow. My husband committed suicide in 2006, on my birthday. But he wasn't found until October 17th. It was a horrific death. I know he's with me. He visits me in my dreams. And I feel him all around me. He was my life. We were together since 8th grade. We grew up together and when he died, so did the person I used to be. I miss the life I once knew. I don't mean to go on about this. But it's part of who I am. I'm in support groups for grief and loss.
When I saw my neurosurgeon, he told me that he was going to point me in the right direction and refer me to a good neruoroligst. He saw that I wasn't having the right treatment. I haven't had a doctor treat me right until I met him. My Mri's are scheduled for September 2nd. I'm trying to keep my mind occupied during these waiting periods. I love playing the stock market and it definitely makes time go by faster. I feel more confident now that I have a good doctor. I'm still trying to find a new PCP. Plus I'm trying to find a new psychiatrist and therapist. I have a appointment with SS on August 8th. Hopefully I'll get Medicare. I should have been on Medicare 2 years after my disability, but I can't remember why it didn't happen. I've lost many years of my memory as well. It's definitely been a struggle. But I'm still here. I'm a fighter and I won't give up. ❤️
Thank you for your kind words and support. I have my Mri's scheduled for September 2nd. I'm very grateful for my neurosurgeon. He also said that he will point me in the right direction for a neruoroligst. I'm still searching for a new PCP and psychiatrist and therapist. I also have a appointment with SS on August 8th. I should have been on Medicare after 2 years of being on disability. But I can't remember why it didn't happen. I'm also a widow of 16 years. My husband committed suicide on my birthday in 2006. But he wasn't found until October 17th . 2 months he was missing. It was a horrific death. One that I still can't wrap my head around. Yet I know he's with me. We were together since 8th grade. We grew up together and when he died, so did the person I used to be. It's definitely been a struggle to say the least. But I'm still here. I'm also in groups for grief and loss. I won't give up, I promise. My secret promise to my grandchildren and children is that I won't leave this earth until I KNOW that I can leave this earth knowing that they're stable and secure. I play the stock market and it definitely makes time go by faster. It keeps my mind occupied. I write as well. It's very therapeutic. My dream was to write a memoir about my life. Hopefully I'll be able to keep my dream. What I'm going through now, is something I can add to my memoir. I will definitely up that book. Reading is also something I love. Thank you for reaching out to me. ❤️
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2 Reactions@sally3240 Let's be very clear about this. My guess is that about 95% of medical patients in the USA do not receive appropriate care. Just a couple of examples: Our son age 62 is dying of several autoimmune diseases. A few days ago, he could get himself out of bed in the morning because of the intense pain. He needed some added care which could only come at the hospital, including O2 and some pharmaceuticals. The ambulance crew refused to take him to the hospital because he has been there one other time this year. So we bundled him up and drove him to the hospital. Second, because of my environment over the years I have many AI diseases which have been triggered as I get older, including such as malignant hypothermia. On at least two occasions I have been refused treatment because of the MH, and on a couple more the surgeon just said "Don't worry about that. MH is just a joke anyway. " Just now I have been told I need to get an official diagnosis of all my AI crap. OK. I agree. But then the lab says they will not do the work of preparing the official diagnosis of all my AI stuff before they receive, from my Primary who has not ordered and will not order, an official Whole Genome Sequencing report. They must have the official AI diagnostic report first. ???????? oldkarl
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1 ReactionI'll be 52 this year and since my partial hysterectomy in 18, I've had so many health issues. I have found things out about my health from CTs or MRIs. I have a small arachnoid cyst on my brain stem. First notice was in *19, and now my temples stay swollen, migraines with aura, vertigo, balance and vision issues. Every one says it's no big deal, but you're not supposed to walk around with swollen temples and continuing issues with ear infections and ear pain. I feel like I'm 100 and it's really impacted my family and myself. Now, this cyst is something I was born with and I have an extra rib, and a dva that was clear on MRI but now it's a cyst. So, every one I've read about, my prayers and thoughts are with each of you.
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