Right sided numbness

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Hi folks basically been in my bed for 4 days straight cause of extreme fatigue i have right sided numbness (right face right arm leg ) tingling face twitches eye lip under eye . I really don't feel good I had right sided numbness before when my spacial awareness went of and had a continual headache severe headache for 6 weeks at the end of this I had the worst headache of my life and literally felt like something exploded in my head but after this and my lumbar puncture it seemed to subside and I had a clear brain Mri ( showed enlarged sinuses ) so I'm waiting for my referral to barts but should I mention this again to gp because what can they do on a clear MRI and they won't do a pituatry MRI till I have a diagnoses .honesly feel like ain't gonna be heard anyways but what could they do . I have had a symptoms of at leat 2 Tia's before . I'm not panicking cause getting used to feeling s**t but am slightly concerned of stroke is stroke common in pituatry disease x

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  • Posted

    I have been so sick with Cushings that i laid on floor next to bathroom door as i was too fatigued to get to bathroom. Im not sure how many tests you have had, a putuitary tumor can be the size of the top of a pin..i was only diagnosed in 1989 because the radiologist saw the stalk was bent on the pituitary. It took 9 years to get diagnosed. I have had the 2 pituitary surgeries one in 1989 and 2016..im dealing with a numb head..been that way since August of 2016, there are just so many factors to deal with and without a decent primary Dr and a Endocrinologist, the duagnosis takes forever. I can suggest one thing that may help, i am b12 deficient and this causes numbness and neurological issues. Buy 5000 mg dissolveable

    B12 pills..take 2 a day. I have had a couple tias..not much they can do for that, but if head or face is numb probably wise to go to er to get checked.

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    • Posted

      Thanks for your reply pretty sure it ain't B12 deficiency been tested that's fine along with the numbness I get foot drop complete loss of feeling in my foot and have tingling in the top back of neck spine area basically my whole right side is numb I just don't want to get to the point I'm vomiting daily again cause this seems to be de ja vu . It's been recommended that I have midnight blood draws and a few other tests honestly there is absolutely nothing else this could be but cyclic Cushings with my labs and symptoms everything else has been ruled out . I'm so sick of waiting and having to deal with bulls**t doctors hope the next one I see is decent and listens and believes me cause the one that recommended the tests was fab I wish he could do it I just can't afford him . I appreciate all input but I know my body I'm pretty certain this is related to Tumor just dunno if there's much point in going back to gp bout it he's been really helpful but he is clueless about pituatry disease that is clear  . Just wanted to know if anyone else has this one side numbness . 

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    • Posted

      Cyclical Cushings if you have had Cushings for so long why oh why have they not even suggested removal of your adrenals 28 years of it for goodness sake ! Drs are so unbelievably crap reading what you've gone and still going through really is not given me any hope , I just can't go on like  this anymore they need to diagnose and treat this and get rid just so sick of it . I just so badly want to get back to normal I've always been a big exerciser runner since having my kids and I just can't do it now at all and I look bout 8 months pregnant . I really hope you find someone that gets remission for you after all this time would be late in coming but that would be amazing a new lease on life . Sadly most doctors I've seen have been awful except for the most recent one .I pray every night this will be fixed the emotional instability is a really horrible part that I find hard aswell . 

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    • Posted

      The most horrific part of this is to be a little bitty person and in 6 months become the most ugly and obese person that your kids are embarrassed to be seen with you. No ive never been able to regroup with my weight because every year for 28 years ive had one surgery after another and numerous serious other medical issues that kept me from regaining who i really was on the outside. People judge you unmercifully, the weight, they think you eat like a pig and most endocrinologust have a mindset that you have eaten to get to that weight. If they just lived with us for 2 weeks they'd know better. Ive dealt with some of the most arrogant and condenscending docs and i thought id taught them that none of the cushings patients was the same. They learned absolutely nothing. Im praying this new endo who i believe to be more jnformed will listen to me as i know my body better than any medical report.

      So pray for me that this new dr listens.

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    • Posted

      Why wouldn't they is what I don't understand since you've been diagnosed and had 2 surgeries etc etc . I honestly can't believe it it's horrific . At one horrific appointment I had the dr said "you need to drop this story these diseases are so rare you couldn't possibly have it you need to drop this story " he was no listening and totally humiliated me . A lovely nurse said to me when he left "keep going, I know this is genuine" and then she went on to state that they see a lot of people who try and fake illness to get incapacity benefit and things. Which my immediate thought was the fact that if they have that mind set about people before they've even seen them that is just sooooo wrong ! What if they're not faking . You can't assume someone is making it up just cause they can't find it straight away it's just sooo wrong .Thank god I found someone who listened and notice something amiss in labs .honestly the whole things been a horror story I just want it over . I will pray for you x  

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    • Posted

      I have never heard of one-sided numbness before.  Have you been told that this could be related to Cushings?  Would be nice if others replied to this question!!

       

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    • Posted

      Just a thought , have you been tested for any form of Diabetes?  Do you have to get up frequently in the night to wee?
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    • Posted

      Yes with any brain head thing I was sent to a neurologist for this and brain scan just showed enlarged sinuses but need a pituatry mri to check for pituatry Tumor I'm not diabetic but I have very wonky blood sugar which indicated insulin resistance which often goes with Cushings pcos etc . Yes I wee a lot and thirsty a lot . I apologise if you feel I am the only one replying 

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    • Posted

      I am not expecting replies as I am only trying to help you.  Sinuses can be a huge problem in diagnosing Cushings.  After my op I had terrible headaches and my GP thought I had a sinus infection.  The Endos did not agree so it was weeks before I saw a Sinus surgeon who said I had a very sever infection and I would need an op to clear it.  If the endos had listened to my GP I would not have had IV antibiotics every day for 2 weeks in A & E and would have been out of pain.  You may also need a Petrosal Sinus sample to see where exactly the tunour is should there be one.  I have Diabetes Insipidus for which I take a tablet at night to stop me weeing but I still need to drink a lot during the day.  Dehydration can be potentially life threatening.  Good luck.

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    • Posted

      How do u mean sinuses can be a huge problem in diagnosing Cushings ? Cause it could hide Tumor etc ? 
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    • Posted

      In my case it did because nothing showed up strongly on my MRI which is why I had the Petrosal Sinus Sampling which was not very nice but worth it in the end.  I do hope you get some answers from the Endo!
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  • Posted

    Sorry you’re feeling so crappy 😞 i would  definitely call your gp or specialist if your symptoms are getting worse. You know I ended up being admitted coz of my heart so worth getting checked over. Hope u feel better soon xx 

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  • Posted

    I would definitely get more medical advice.  I had a sinus infection for 2 years after my pituitary surgery and it was only after my GP kept on that anything was done.  Go and see your GP again.

     

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