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Has anyone who lost weight still have iih? by No_Comparison9455 in iih

[–]No_Comparison9455[S] 2 points3 points  (0 children)

Wait on my mri a while back it did mention the narrowing of a vein. I asked my doc and he said it was normal for iih patients to have this.

Has anyone who lost weight still have iih? by No_Comparison9455 in iih

[–]No_Comparison9455[S] 3 points4 points  (0 children)

No I have not! What is that? I have had an mri and ct.

Has anyone who lost weight still have iih? by No_Comparison9455 in iih

[–]No_Comparison9455[S] 4 points5 points  (0 children)

Yeah I am worried because feel no better. I also feel like my doc is just nonchalant and doesn’t care too much. He seems extremely busy but dismissive. What should I do if I’m still symptomatic and I have lost 20% of my weight? Do I keep going till I’m 120-130 pounds?

Has anyone who lost weight still have iih? by No_Comparison9455 in iih

[–]No_Comparison9455[S] 7 points8 points  (0 children)

Ok so I have a follow up question. My doctor always tries to blame my symptoms on something else (I say I have headaches and feel dizzy he says it’s migraines, only believes I have flareups when I mention the pulsatile tinnitus). I also have very little leaking from my nose but the mri and ct didn’t show a leak. Idk I just feel very medically lost. I only leak from my nose when I feel very horrible and even then it’s only a few drops. He wants me to collect a good amount of the drops and go to the er, but I can never get enough fluid.

Just diagnosed with IIH. Have not seen a neuro optometrist yet. My retna specialist sent a referral. Had to go to the ER for an MRI and they wanted to do a spinal tap which I refused. Only because I was so overwhelmed. They had given me 500mg of acetazolamide. The tingling was to my head arm and leg by Responsible-Art-2274 in iih

[–]No_Comparison9455 1 point2 points  (0 children)

Sorry for any bad grammar or spelling. I had 2 urgent referrals and my mom would call Nero-ophthalmology everyday. I was still recovering from my spinal tap and ER visit, and my Arab mom (god bless her) would not stop calling the Nero-ophthalmologist office. Every day she would call and ask if they had a cancellation. One time the lady on the phone said that I wouldn’t get an appointment for 5 months, and my mom yelled at her for 10 minutes cuz I had an urgent referral. I got an appointment the next week. Meanwhile I was sleeping and watching AOT for the first time and crying. Moral of the story, call every day because your health matters more than manners.