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MS Diagnosis, Courses, and Stages

Thinking I Have MS

  • By fletcher96

    Hello. I’ll try to keep this short. Since my senior year of high school, I started getting pain in my right eye. I thought it was migraines, but the pain only affects my eye. It is bad and comes and goes. It’s been a few months since I’ve had it last. I lost weight rapidly without trying a year and a half ago. I am 21. A year ago I went to the campus nurse to see if I had anemia because I was so cold all the time and because of the weight loss. I also felt groggy in the morning. Ferritin was 29. Thyroid was fine. 6 months ago, I went to urgent care with tingling in my arms, legs, hands, and feet. Nurse checked my blood – no B12 or folate deficiency. “Normal…”. It was preventing me from sleeping. It hasn’t stopped since then, I’ve just gotten used to it. Tested my DNA – biggest risk factor for me, at least with autoimmune disease, is overwhelmingly MS. I thought I had celiac, turned out to be just a gluten intolerance. Developed many new allergies. Acne, BMI is 18.0. The tingling turned into sharp, electric-like shock pain all over my body that lasted about a week and a half. I also had a no-no tremor in my neck. Chronic fatigue, dry skin, low body temperature, pre-diabetes. Doctor referred me to a neurologist thinking it was dysautonomia. I canceled the appointment when things got better, but he urged me to reschedule because these kind of things don’t go away. I used my heart rate monitor to self-diagnose with POTS. I get bloating and inflammation. I get hot and cold hands, but mostly they are always cold. Any thoughts? Thanks!

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  • By Erin Rush Moderator

    Hi fletcher96! I am sorry you have been dealing with all of these health issues.

    First, I think your doctor is right; you should re-schedule that appointment with the neurologist as soon as possible. Whatever you are dealing with, whether it is MS or not, is something that needs to be diagnosed and treated — the sooner the better!

    It can take some time to get a proper diagnosis for a condition like MS. First, here is some of the diagnostic testing a physician will use to diagnose MS — https://multiplesclerosis.net/diagnosis/.

    Also, there are a number of conditions that share symptoms with MS. You can read about them here — https://multiplesclerosis.net/diagnosis/ruling-out-other-health-conditions/.

    I hope you are able to get some clear answers (and treatment!) very soon!

    Please keep us posted, if you feel comfortable doing so.

    Best, Erin, MultipleSclerosis.net Team Member.

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    • By fletcher96

      Hi Erin! Thanks for the reply. I actually decided not to go to the neurologist at first because I saw the PCP basically just wrote “anxiety” all over my notes, so I was humiliated. My mom was with me the whole time and said she didn’t think I seemed anxious at all. But I did see a neurologist who said MS remains a consideration in the notes. As for my racing heart (which all doctors/nurses I saw so far chalked up to anxiety), I saw a cardiologist. Turns out I was right – there is something wrong. EKG picked up sinus tachycardia, short PR, and ST depression. So that experience has convinced me never to doubt my intuition ever again. I’m getting a MRI on Tuesday. But my tingling/nerve pain is symmetrical all over my body. I thought MS was placement specific? I also think I got the MS hug. For like 20 seconds after getting up, it felt like I had majorly bruised ribs on the left side and got all tight along the whole flank. Could that have been the hug?
      I also took a Xanax for the first time since I know psychosomatic pain and sensations go away when the anxiety goes away. Nothing happened. All it did was make me tired…. So I know now that something is really up.

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    • By Erin Rush Moderator

      Wow! How unhelpful of the PCP! I think most good doctors would not be so dismissive of a patient’s issues and concerns. I think it’s wise that you have been pushing for answers. While I am sorry you DO have cardiac issues, I am glad that you at least have some answers now and know what you are dealing with. I hope your MRI went well and that it gives your physician some insight into what could be going on. MS is a pretty tricky condition and almost every person experiences symptoms a bit uniquely. You may or may not have experienced the dreaded MS “hug”. Also, the tingling and pain can be very unique for each person. I hope your physician is able to offer some clear cut answers and suggestions for you! And keep in mind that most physicians use a battery of tests, and not just MRI results to come to a diagnosis of MS. Good luck and thank you for the update!

      Best, Erin, MultipleSclerosis.net Team member.

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