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Looking for insight and opinions?

I’m just looking for insight/opinions, really.

I have had symptoms since I was 6. Off and on. Luckily, mostly off. But I’ve been dealing with it for 30 years now. They knew it was AI, but didn’t know what, and wouldn’t diagnose me.

Brain and cervical spine MRIs

It’s been an uphill battle over the years as symptoms returned and worsened and doctors told me I’m just fat and depressed. That if I lose weight, everything will be fine. Well, for no reason other than this illness, I’m only 10 pounds shy of being underweight per the BMI chart, so... that’s not it. Anyway, my diagnoses are Hashimotos, Raynauds, undifferentiated connective tissue disease, and hyperreflexia. Finally, after begging and pleading for way too long, I got MRIs. They did brain and cervical spine.

Fatigue, numbness, and worsening symptoms

I have had random numbness in limbs, but primarily feet, my whole life. Debilitating fatigue. Vision issues when I was 6. For the past 5 months, it’s gotten much worse. Dizziness, fatigue, confusion, numbness, tingling, hand and foot pain, eye pressure and pain, vision loss in one eye, blurred vision in the other eye, weakness, loss of dexterity in my hands, horrible abdominal issues and pain, etc. Well, they found 6 lesions on my cervical spine and 20-30 brain lesions.

20-30 lesions on my brain

My follow up appt isn’t until February 18th. Luckily my rheumatologist got me in tomorrow. The neurologist warned that he doesn’t think it’s MS (so, so many doctors have mentioned MS and have been truly shocked that I hadn’t had an MRI, and then would refuse to order one for me), that just because when the results come back the tech mentioned MS doesn’t mean it’s MS. But since the lesions on the cervical spine match so many of my symptoms, and since I have 20-30 lesions on my brain, it would be a stretch to think otherwise.

Tests for lupus were negative

My rheumatologist, who I LOVE, has thought lupus all along (I’ve been seeing him for a year), but I always test negative in lupus specific blood tests. Anyway, I really am just looking for insight. Some of my symptoms have ebbed and flowed, while others have remained constant. But they come back with a vengeance within about a week or two of lessening.

I have so many questions

Thoughts? Sound like MS? I didn’t realize there are four different types of MS. I feel like I have so many questions. I know I have to wait until tomorrow to see what my beloved rheumatologist says, and may have to wait until February 18 to find out if I have a diagnosis or not. Though, I’m guessing my rheumatologist can make that call, but I’m also guessing that may be stepping on toes and something he chooses to avoid, which I fully understand.

Feeling very alone

Thank you! I feel very alone. With all of the vision issues, as well as the cognitive issues, I can’t drive, anymore. Not only is it too exhausting, but I get disoriented and confused easily, can’t filter stimuli and this am distracted by everything because I can’t determine importance, etc. I’m a SAHM of a VERY active 2 1/2-year-old. And now we’re homebound. It gets lonely. I also don’t have anyone in real life to gets what I deal with/go through, so I thank you for your patience with me!

  1. Hi sarah,

    This has had to be a terrible ordeal for you and I am so very sorry that you've not had any real answers.
    Also to be a stay at home mom with a little one, how my heart goes out to you!

    I am thankful that you have a doctor that you seem to really trust and like, and hopefully if necessary, he will do referalls for you.

    The following link might be of some help:


    I'm thinking that any and all information gathering right now for you, could be nothing but helpful and maybe as you're exploring these sites some grain of information will present itself to enable you to discuss with your doctor or maybe ask key questions which could help?

    We are so glad that you found us and reached out here, and it's my hope that you'll feel a little less alone!

    Please keep us posted and let us know how you're doing!

    xxxx's Janus

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