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CyberEm

682d

[More of a vent] A couple months ago I started exhibiting a few symptoms of MS. "Nerve attacks" when walking into heat, accompanied by blurred vision and lethargy that can last hours after the nerve pain. I'm aware of the symptoms because a couple in my family have it, as well as one of my close friends. When our doctor friend heard my symptoms, she told me to get checked immediately. I did and my doctor is also worried, she ordered quite an amount of blood work (5 and a half vials) and scheduled an appointment the closest she could. I've completed my blood work and now I'm waiting til the beginning of next month for my follow up appointment. If the blood test results come back off, she's going to send a referral to a neurologist and MRI. On good days, I struggle with the idea of it being in my head or the doctor thinking I may be faking my symptoms. On bad days, I struggle with the waiting game even more. What if everything does come back okay, if there's no physical proof of anything, then I can't receive help. Or if I do receive this diagnosis and my health keeps declining like it currently is, where does that put me, my job, and my family? The longer I wait and the more frequent my symptoms, the more I worry about the what-ifs and physical discomfort. How was getting your diagnosis? Did you also struggle with scenarios or the possibility of being mis/not diagnosed? How did you ease the anxiety?

Top reply
    • KayCeeBee

      643d

      Heat intolerance wasn’t how I got diagnosed, but I’m pretty sure it’s something I deal with and I know it is a possibility with MS

    • Blue_Star

      643d

      Hi! It looks like you posted this about a month ago… do you have a health update? Were you able to get an MRI?

    • KayCeeBee

      643d

      Heat intolerance wasn’t how I got diagnosed, but I’m pretty sure it’s something I deal with and I know it is a possibility with MS

    • Dreamcast101

      679d

      It definitely sounds like it could be MS. Everyone’s symptoms are different. It can be really crazy and aggressive but nice all at once. I could be feeling fine then one sudden move or something just fucks me up

    • specialCharlee51

      680d

      I try hard not to be gloom and doom. This disease is so complex, what one person experiences might never resonate with someone else. IMO, we must support each other because we are struggling with a medical profession that is designed to make fast decisions and not keep looking when solutions are not readily available. It can be a nightmare to find the best doctor (who accepts your insurance!) and develop a treatment plan. I hope my answer was helpful. Never hesitate to ask. We patients may not always get it right or have great answers but most of us will always listen. Be well in your journey. *Charlee51

    • specialCharlee51

      681d

      The first doctor I met with told me (are you ready?) I was constipated. IK. R?? but 10 days later I lost feeling in both legs. So someone was full of sh$t, just not me! I've since had a couple of very good doctors who took the time to work up my symptoms. Started me on the right meds, etc. Doctor #1 clearly didn't know squat about MS. The others have been good to work with. So my advice for you is to relax a bit. Stop stressing because right now you don't have all the facts. Believe me, if it's MS, there are ways to treat it. You might have it or you might not. Worrying about what might happen is a waste of your time and effort. For now, just keep focusing on your strength and your positive attitude. There's time for all the Other stuff later.

      • Marface

        674d

        @specialCharlee51 My goodness! Why are doctors so quick to blame the colon? I had severe gastroparesis during my first flare up and I had to go through a whole rigamarole of abdominal x-rays and ultrasounds before finally getting nerve tests done. (Even though I have a lot of textbook symptoms of MS and a ton of family history with severe autoimmune diseases, oh well) I'm stuck waiting on my spinal tap because the medical system is a bit of a mess right now, but my new primary is taking it seriously which is refreshing.

      • CyberEm

        681d

        @specialCharlee51 Certain doctors just really love constipation diagnosis. was diagnosed with constipation shortly before going to the ER and getting my gallbladder removed. Couldn't imagine receiving that for MS symptoms. 🤦🏼‍♂️ And thank you for the comforting advice ☺️

    • Midwest_Dog_Mom

      682d

      I just got diagnosed this year and I had had weird symptoms for the last 2 years. I thought I was crazy but knew in my heart there was something wrong. When I got the diagnosis I strangely felt relieved because it validated the way I had been feeling for the past 2 years. It’s hard to deal with the hopelessness you feel right away but there is hope and once you start to cope it gets much better!

    • JenJ

      682d

      I was diagnosed in 2015 with a MRI and spinal tap. Lesions were found in both and my old neurologist told me I had evidence of having MS for at least 10 years prior to the diagnosis. The quicker you get a diagnosis the quicker you can begin therapy.

      • Soccerunicornwizard

        682d

        @JenJ agree with everything you said.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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