Hello Ladies, I am new here and hope posting in right group. Forgive my English is not good but I ll try 
Post is long since I have lot to say
in 2014 I got heavy periods with clots , could not leave house , started mirena . looked like blessing. after some time I developed burning pain in upper back and after many tests was just diagnosed with muscle strain. I started gaining weight … periods never stopped but became very less. 2017 I got left arm weird feeling , kind of was not mine followed right leg same thing. Yearly 2018 I got every mont h bad headache and abdominal cramps before period. in 2018 October I got spasm in my left buttock , vagina and rectal area with pulling sensation like feeling heaviness . I was on mirena iud since 2015.
all got bad in 2018. I started having bad cough with ear ache and heavy period. went to gyn , tests all good, ent all good , ct lungs all good , procto tests all good nothing could explain my symptoms. pain in buttock unable to sleep , ball sensation vagina , heavy legs and burning coccyx pain on top of all I started to sweat night , woke up to change pj and bed every night.got shakes , tremors, skin crowling sensations like someone was touching my skin or something, itchy and hair fall like hell.
my spasm went away after 4 month , but I started loosing weight 20 lb in 4 month, I looked terrible.pale , sick like skinny and had bad bad cough. I started limping on left leg and I noticed my left gluteus muscle was smaller then right and I was convinced I had MS. brain mri showed nothing and I was told ms does not cause muscle wasting and I panicked . I have ALS !!! Saw many neuros done emg and ALS specialist told me it is not als.. I even vent to Mayo ALS clinic but all clean. I was going nuts… I was sure I had ALS just not meeting criteria of diagnosis, I developed muscle twitches and I got sooo weak I was in bed for long time , with left facial twitching, fatigue weakness and left side leg buttock pain.
I was getting worse… diarhea , breast pain and lots of crying about everything. saw again all chain of Doctors , sonos, mri ct scans and nothing… I started having burning tongue and lesion on lips.. Now I was sure I had oral cancer , saw ent , pet scan , clean… biopsy of lip … nothing. my skin changed color … biopsy … nothing… draw blood for lymphoma… nothing.
worse had to come… I developed strange head pressure with slowing mu speech and again I went to neuro , brain mri .., emg … nothing.
I was slurring speech , was slowed in walking and even I was walking more left side , loosing balance. I was 100% sure : I am dying. corona came 2019 and I did not care. I took trip to Johns Hopkins neurology . NOTHInG!!!
I asked my obgyn to take my mirena out , only thing I could think of was that may be it was the cause, previously many times asked for but I was reassured it was not the cause and was all this nothing to do with women health thing. but this time I said, just do it and it was out.
Now I have been without Mirena for almost 6 month and my head pressure is gone, my slurred speech is gone but sometimes if im tired I get a bit slow. my new symptom is very very bad pain in my thoracic spine and around ribs with tight feeling and like I have diaphragm spasm and cant breathe , feels heavy around . had spine mri again, and guess what — nothing. I cough since .. no covid had many tests, that started before covid anyways … I have left hand weakness sometimes , left buttock weakness , bend like pain back and ribs . bad bad headache before periods and they are heavy again without mirena. I have days that I just have to eat so badly and I become red on face and I cant breathe and have heavy back , rib , diaphragm pulling feeling. I have ct of chest schedule d due my cough again, hope its not cancer :(( I think I have perimenopause attack. what do you think?
I have days , I cant function at all. I am 43, have 9 and 19 y okd kids and lovely husband and I made them all crazy in this ordeal of craziness and Docs and tests and all this.
I am sorry for long post. please to share your opinion and forgive me my bad English!
Much Love! Thanks in Advance !
Nina
