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Undiagnosed and unsure if it's all in my head
I've had peculiar symptoms for months starting October 31st. What started as eye droop, went to pins and needles (tingling) across my left arm and leg and then spread to the rest of my body. For weeks, I had issues when I first woke up from getting off the bed and generally had struggles with some day. Since my symptoms are acute, I believe when it goes away for a few weeks it's gone.
Since of my eye pain and fluid leaking out of one of my nostrils doctors had considered IIH/csf leak for sometime, but the lumbar puncture came back 19 (so practically normal). I had no papilla edema when tested by the eye doctor. Since, previously at the beginning of the journey doctor's have labeled it stress related and have mentioned me to being hyperfocused on my sensations, I am wondering if there is a possibility this is all in my head.
Of recently I have been dealing with weird stiffness in my right arm, going to my knees and legs. The pins and needles flared again after a two weeks or so with minimal sensation. I had tests for autoimmune, but everything came back normal. I have no idea what else to do at this point, I have a follow up with neurosurgery, but I don't know what else to do. As a younger individual, I feel dismissed by so many of my doctors and have been online for school for this semester due to this. Rheumatologist immediately said there was no way that anything autoimmune was going on a few days ago, so I went home immediately. I have had spine and brain MRIs (had chiari 11.75mm, but probably unrelated) and EMG, at this point I probably have nothing left to explain it atp.
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@sandy8043 - in case you are interested, Mayo Clinic Connect started a new support group this week for multiple sclerosis https://connect.mayoclinic.org/group/multiple-sclerosis-ms/.
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3 Reactions@grass16
Curious, did Mayo say why they rejected you?
I will say the squeaky wheel gets a lot more attention. If you have medical people in your family they may know what words to “use” when appealing things. It can make a difference at times. I just got very forceful. I was told “do not have any more surgery, it won’t help and could make things worse” yeah, worse, ha, was taking morphine and hydrocodone daily. My kids’ dad (my ex) committed suicide so that was not an option for me. I was desperate and in constant pain.
@wisco50
I think it's mainly because I am in pediatrics, so that division is kind of full from what I heard. Also, I am borderline adult, so they don't want to take someone who will graduate into adult doctors so soon. I applied a while ago, I would say around mid-November? At that time all I had in my documentation was the Chiari, I guess it wasn't that big of a deal and I got rejected. Unfortunately only one mayo location does pediatrics, so they're booked. My mom talked to my family and they gave some tips, I can appeal, but I'll probably get rejected.
@grass16 there seem to be several clinics and a hospital connected with Cleveland Clinic in Atlanta, Georgia. There are several Cleveland Clinic branches all over Florida too.
In Georgia:
https://www.yellowpages.com/atlanta-ga/cleveland-clinic-hospital
In Florida:
https://my.clevelandclinic.org/florida/locations
@grass16
Don’t necessarily assume that though. I think they know a certain number of patients will NOT appeal. I had to appeal lots of stuff.
One way to approach these rejections is -IMO - not by computer communication. A well typed letter (that you keep copy of) can impress and catch the eye. The other thing is sit down with someone who writes well (if you don’t feel up to it, it does get exhausting). What I think you may want to strongly point outspush buttons on is you know you have this malformation, that you were told it shouldn’t cause an issue (if I have it correctly?) but you just KNOW it isn’t normal to have salty fluid draining etc which could certainly ??
be cerebral spinal fluid (CSF) and what happens if no one deals with it and you get an infection with all the subsequent problems and complications 😳😬
Do you see where I’m suggesting you can use that for pressuring them to action?
Also, if I didn’t say this before document everything! What date/time you discussed ABC with Dr X etc. Then you include that in your nice but concerned firm answer and send it by certified mail, return receipt required - that way someone acknowledges they received the information, they signed for it - you’ll have a paper trail so someone can’t say they never saw/read/got this.
Hoping this makes sense. I still have my file on all this to see if it helps anyone else.
If I think of more I will touch base with! - Ginni
@rashida
Thank you :), I will see if I can possibly try going there.
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1 Reaction@wisco50
Thank you for all the information :). It is certainly very detailed. I will ask my parents and family about it and try to appeal.
@lisalucier Thank you. I wrote in and asked for an MS group. I was told it was in the works. So glad its here. Thanks to all who made it happen. Thank you for letting me know.
@grass16 keep knocking on doors till one opens - don’t give up!
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1 Reaction@rashida
Thank you ❤️