Misdiagnosed for more than 20 years

By gurnzy

1 min read

Looks like I have been fighting MS since the mid 1980s.

Because my family did not believe I needed medical attention because I am a girl, I did not start getting medical attention of any kind until my high school and a different school in our city got involved and started forcing my parents to take me to the doctor. Then there were many years of I did not have medical insurance, but once I got it, I started going to the doctors for the different symptoms.

I was going to the same neurologist for over 10 years, on and off because of lack of insurance, before he started putting things together and tested me for MS. I was finally diagnosed in 2012.

The headaches get so bad, and are getting worse with each one now, I am ready to give up on life. I just can't take the pain anymore. The latest bad headache has left me continuously numb and tingling in my arms, hands, legs, and feet, and has left me with severe balance issues.

I have a cat who can tell when my MS is acting up, or getting ready to act up. She is my primary caregiver with a tiny toy poodle being her back-up.

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msdoesnthaveme Member
I to have MS.I have RRMS to be exact.I was diagnosed in my late 20's which approx 10 years ago. I have been through most things MS has to offer. After a very tragic time in my life I made it my business to educate myself on the disease that lives within me. I have also experienced the migraines that you speak of. They are more than debilitating. The numbness that you feel afterwards are not necessarily from the headaches, but are from the attacks that cause the headaches. In my case, I found that I was over working and doing way more than my body could handle. Once I stopped working at that 6 day a week job and prioritized my activities the headaches left never to return. That was over 5 years ago. Please find a Neurologist that Specializes in MS and do a lot of research on MS. I promise it will help you in the long run.I am willing to help you in anyway possible.I can be reached at cs@msdoeshaveme.com or on FB @msdoesnthaveme.com.
1. gurnzy Member
 I lost my job, insurance, and doctor care back in September 2012. My doctor is a neurologist who specializes in MS, but until I get a way to pay for visits, I can't get any care.
Laura Kolaczkowski Moderator & Contributor
Gurzny, I'm sorry to read your medical care was postponed for so long but glad you are now connected with a neurologist. Is that doctor a specialist in MS? He should be able to experiment to find the right combinations to ease the pain or refer you to a pain specialists. I smiled when I read about your cat - animals become so connected to their owners and make great service and emotional support pets. Don't give up - keep looking for ways to ease the pain. ~Laura
1. gurnzy Member
 I have not been able to see any doctor regarding my MS since September 2012. I lost my job and my insurance and have been denied several times by the local Social Services office for any help.
carrie7426 Member
Hi Gurnzy I also am suffering from MS and have been toying with my diet to help my symptoms. I read a book called "The MS Recovery Diet", While the diet is by no means a cure, it has helped to improve many of my symptoms. Staying away from refined sugar and honey has enabled me to cut out much of my pain. Cutting Gluten has also helped. Have you applied to Social Security Disability? Once you have been on that you can get Medicare. In the Interim you should apply for Medicaid.
raspapa5 Member
If you had a medication you were using or on your Dr suggests you use, as long as you have no insurance to cover it call the maker [ MFG Pharmacy ]of medication. They will send you papers to fill out and maybe your Dr to fill his part. Ask if they have an assistance program. They [ many ]send your medication free.