Finally have a diagnosis!

Hi everyone! I just got diagnosed with MS on 7/28/16. It has been like a relief for me cause I have been sick for like 5 years now. It got to be point the drs told me I was crazy and it was all in my head. I was also sent to UCLA because they thought I had cancer. I finally found the right dr to listen to me and she diagnosed me right away. I had some issues getting a definite answer because I have a neurostimulator implanted due to a back injury and was not able to have an MRI so I had to have a spinal tap done. Some bands showed up in my results and now my Dr wants the stimulator removed before she starts treatment.... The bad thing is my injury is a workman comp deal so trying to get them to do surgery had been challenging! Hoping it's fixed soon so I can start treatment!

13 Replies

  • Congrats! It took about 6 years to get my diagnosis as well. It amazed me as to how little doctors know about our condition. Even more so, how much they don't really listen to their patients. I hope for continued progress with your treatment.

  • Isn't it ridiculous! That's crazy nobody should wait that long! Thank you I can't wait to get started on a treatment I feel like I'm getting worse each day :(

  • So since they found out that you have ms, what kind of meds are they going to put you on?

  • My Dr had said something about Gilenya? She won't start treatment until I get the stimulator removed so idk when that will be workman comp is fighting me.

  • That sux. Work comp can be a pain in the ass. I'm on Gilenya. They have to monitor your blood pressure when u first start it.

  • That's what they told me I have to stay at the Drs office for 6 hrs. Have you had any side effects from the medication? Do you like it?

  • It does make me sleepy and it gives me headaches sometimes. But I will take that over injections any day.

  • I agree with u! I already have to do shots because I'm a diabetic I don't want more! I already deal with bad headaches so hopefully I don't notice them. Thank you for your input! :)

  • The first time I reported my primary symptoms just before my diagnosis my doctor at the time was similarly dismissive and tested me for everything from pregnancy to anaemia! After that I switched doctors

  • Right I have been through everything. I switched Drs like 3 times. One thought I had lupus but all the test came back fine. Thank god for my last dr. I was having really bad headaches they were triggering the back of my eyeball and she said with the optic nerve involved they aren't just headaches or migraines something else is going on! She said I don't want to scare u but I'm thinking MS. I couldn't do the MRI and my insurance took forever to approve a spinal tap. But come to find out she was right!

  • I had symptoms for years before I was diagnosed a year ago. I was diagnosed with a stroke twice in 3 years, even though I have no risk factors. I was so lucky to have the doctors that I have. I told my primary doc that I thought it was MS and he said "You might be right!". The first workup was negative. I had to go to the ER two months later with "stroke" symptoms. My primary doc called the ER doc and I ended up in the hospital, where they began the MS workup again. I was then transferred to a large research hospital. The neurologist there told me that MS was the least of his concerns, but he continued the workup with an MRI and spinal tap. Both were positive. My neuro came in and said "Congratulations! You were right! I was wrong. You definitely have MS." He really was wonderful and continues to take good care of me. I was so relieved to finally have a diagnosis. I thought I was going crazy until then! Good luck with your MS journey!

  • Thank you sooo much! It's sad we have to feel this way about a diagnosis. But soo glad I'm not crazy which I knew but I was starting to feel that way! So glad we have this site to compare stories and support each other! :)

  • It was many years before they finally, officially diagnosed me. Doctors had told me it was all in my head also. When I was finally diagnosed it was a relief, at first, then the fear set in. After a year of nothing else happening (and I was still alive) I decided to get educated about MS and move on. It was another 6 years before I had another attack.

    It is scary but with knowledge and people who care, you can live with this. Our symptoms may be different, severity too but we can go on with our lives, maybe not how we thought but we can go on.

    Thanks for all the ears and shoulders that are out there when needed!

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