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minniepearl2
@minniepearl2

Posts: 1
Joined: Feb 08, 2019

My story

Posted by @minniepearl2, Thu, Feb 7 10:32pm

Hi I am new to this group. I just happened to find you all. I am dealing with a lot of unexplained medical problems. I think I have some type of autoimmune disease. I don't know what yet. This has been going on for almost three years now. I got hurt in WA. I was thrown against a wall at work and on conscious for 3 minutes. I could not walk by myself after wards. I was shaking all over. Like when your body is scared. After I left the emergency room I was walking in the market by myself and I looked down and noticed my rt foot was curled and I was standing on my ankle. Later I started experiencing falls. I fell all the time. My students pushed me down like a stack of cards. I started dropping things. I was very tired. The things I loved I now found frustrating. I went to about six doctors in WA. They told me to resign from my job. This was all I knew for 16 years. I had just finished my Master's Degree. I had two MRIs of my Brain, two of my cervical spine, and one of my lumber spine. I am now in CA. I have a wonderful neurologist who is trying to figure me out. I have Cerebral Palsy that affects my left side. It is my strong side now. Before everything changed for me I was walking, running, hiking, driving, and very independent. Now My right side is my weak side. i drop things. I have to use a walker to get around. I don't drive anymore. I get tired easily. I also found out I have many allergies to foods, insects, animals, trees, dust, etc. I also found out recently that I have sleep appnea. So I am a part of a group that focuses on eating a low carb diet. I had to go gluten free because I am allergic to wheat. . I went to a nuerooptimologist a few days ago She said I have thinning of my optic nerves in both eyes. She said it is that way in my brain too. I am scared. I want so much to know what is up with me. I went to see an MS specialist last march. He said I did not have MS.. I am wondering if I do. I did not have these new symptoms when he evaluated me. My cousin has MS. My doctor thought I might have MG. She did tests and said no. When I had my first MRI on my brain it said I had something on my brain like people get who have MS. Now my doctor says I have narrowing of my cervical spine. So I had another MRI today. I have been dealing with this uncertainty for qutie a while. It has been so upsetting to me that my bangs fail out. There is more to share. I thank you all for letting me be a part of this group.

REPLY

Hi Minnie! If you don't mind me asking, did your PCP ever send you to a specialist to rule out or confirm an autoimmune disease? Have you seen a hematologist? I wish you all the best. 🙂

Hello @minniepearl2, welcome to Mayo Clinic Connect. I know it must be hard dealing with all that is going on with your health. Have you thought about seeking help from Mayo Clinic? I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments

Since you mentioned the injury of being thrown against the wall and losing consciousness for 3 minutes, I'm wondering if @jenniferhunter may have some suggestions for you.

Hi Minnie,

First let me say I am so sorry you are going through this. I certainly can relate. I have been dealing with my issues since 2013 with no certain dx. I have been to so many physicians and had ever test you can think of. My frustration is the physicians not talking with each other. Ever time I have an appt. I feel I am provided the updated information. My husband states, ever appt. is like the first. Coordination of care is poor, and none of them agree with the other.

I have been off work since February 2017. I am a Nurse by trade. It is driving me nuts being at home. I just want someone to fix this or tell me what it is and what to expect and I could digest and move on.

I hope you find your answers soon.

Sheila

@sbrokenshire

Hi Minnie,

First let me say I am so sorry you are going through this. I certainly can relate. I have been dealing with my issues since 2013 with no certain dx. I have been to so many physicians and had ever test you can think of. My frustration is the physicians not talking with each other. Ever time I have an appt. I feel I am provided the updated information. My husband states, ever appt. is like the first. Coordination of care is poor, and none of them agree with the other.

I have been off work since February 2017. I am a Nurse by trade. It is driving me nuts being at home. I just want someone to fix this or tell me what it is and what to expect and I could digest and move on.

I hope you find your answers soon.

Sheila

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That is what I am also going through. Since 2015 for me. Many symptoms daily, with some days being far worse than others. I've seen multiple doctors & specialists but can't get a definitive diagnosis. All suspected that I have polycythemia vera (a rare blood cancer) and one suspected leukemia. My blood test results all pointed to polycythemia vera except for one…the JAK2 mutation, which is a major diagnostic criteria for the disease. Problem is, my blood test results all point away from secondary polycythemia. None of my results match the secondary form, and all but one match the primary form. But that one missing one is needed unfortunately. I'm not receiving the care/treatment that I should be receiving. I've lost a lot of hope and respect for the medical field. 🙁

@minniepearl2 You are in my prayers

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