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frustrated by dr's!!

Posted , 11 users are following.

emily253
emily253

Hi there. So i was recently diagnosed, and after hearing the diagnosis everything made complete sense ( my symptoms ) then i have a follow up with a different dr today, and she says she's not convinced 100%. So now she wants to too x- rays of my neck and shoulder to rule out arthritis due to constant neck tension. I'm sooooo frustrated. This day started so hectic, was running late after having to drive my son to school, so i forgot my daily journal ( to keep track of symptoms) I'm 100% sure it's FM, and so was the last dr. Sorry, just needed to vent ! Had anyone else been diagnosed then had them say they aren't sure ? I'm so angry because i was expecting to discuss managing the FM, not doing more tests... sigh sad

2 likes, 36 replies

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  • emily253
    emily253

    Posted

    Hi everyone, thank you for all your kind words, information, and support. My symptoms started at age 16, i was riding in a competition, woke up the morning of cross country not being able to move my neck. Went to chiropractor he said torticolis, since then it has been severe tenderness of my skin ( very bruised feeling) popping joints, migraines, neck/ shoulder stiffness ( understatement ) shooting pains mostly in my arm's and bottom of feet. Extremities always cold or super hot, words jumbley ( not coming out right or stuttering) horrible memory, only visually remembering really, tmj, horrible leg cramps behind my legs, and extreme anxiety. I suffered a seizure a few years ago, they thought it was a stroke initially because i couldn't speak or control my body for a hours. A neurologist diagnosed me with temporal lobe epilepsy, started meds but they made me sooooo sick i couldn't get out of bed all summer, i was 26 at the time and had 3 little children to care for, so i opted to take my chances with another seizure, haven't had one like that sense, just confusion and space out. I also have arthritis in my ankles due to my riding career, had surgery to remove scare tissue in 2010. Haven't had the xrays yet , my children just got onto summer break and i Don't have childcare since my mom passed away last July. I have a special needs child, so is complicated. Hope to get the x-rays done soon! Thanks for all the support. You are all great !
    • kaz_40
      kaz_40 emily253

      Posted

      Oh bless you have been through the mill, I really for you with all that youve gone through.I too had epilepsy started when I was 13 I had it for a couple of years, and now Im fine. it must be so hard for you with all that your going through and 3 children to care for is their any one that can help you. I know how hard it is my mom was a great help to me with both my boys. from how your describeing your symptoms it sounds very much like fibro to me,ms and fibro have the same symptoms only fibro is more based on pain. hope you soon hear about going for your xrays. we are all here to support each other we are in this togeather take care thinking of you gentle hugs xx  
    • emily253
      emily253 kaz_40

      Posted

      Thank you ! I actually have 4 children now, i had a little boy last February smile as for help, I'm trying to find some now, for help with my 14 year old disabled son, but i have a super hard time finding someone i trust ( as he is non verbal) and medically fragile . We have a program here that offers respite care, but don't really want to go through an agency, trying to find a contracted individual instead. My mom was really the only that helped, i have a boyfriend, but he works during the day. I'm just trying to stay positive, and go day to day! smile i just want to get it figured out so i can focus on relieving the pain and symptoms. Anyone have stomach problems? I developed a sensitive stomach and very nauseated during my " woman times " sorry tmi!!
    • kaz_40
      kaz_40 emily253

      Posted

      Thats all you can do hun go day by day, how lovely another little boy. I have 2 sons both are grown up now. I know how you feel about trusting people, my children only ever stayed with my mom.I suffer from IBS Ive also been suffering with nausea, spoke to my gp she said  its a  symptom of fibro nothing worse than feeling nauseus its bad enough dealing with the pain and other symptoms that get thrown at you. I hope you find some one suitable and some one you can trust and feel comfortable with.You have an awful lot on your plate bless you wish I could help.lets hope you soon have the xrays done and get sorted out. Take care gentle hugs 
  • bronwyn97278
    bronwyn97278 emily253

    Posted

    Hi Emily;  I have just been going through all replies....there are some things that I feel may not have been replied to, especially after you gave us ALL of your history (signs/symptoms and story)....I am thinking re your Neck Tortilus....this could very well be the cause of your numbness/tingling in you arm....for if there are Pinched nerves as a result of same, then this could be the reason for your probs....we all do get a "numbness/pins and needles in extremities" with fibro...but if it is a result from your neck, and riding will definately cause arthrites in many joints....I won't be surprised if they suggest that you also have a MRI, to check re your nerve pathways (and if they do...ask for a Neurolept anaesthetic, as MRIs are hard to get through without having a light sedation)...your other symptoms are all same as for Fibro....but am really thinking that you should have your neck/shoulder etc really checked out for any damage from your Tortilus....you mentioned the :crunching sound...this can be bone against bone...as you probably know.....anyway, let me know how you go?....have you found anyone that can look after children for the day....I'm sure if you spoke to a Social Worker, and Fully explained your eldest child's needs, they will do their best to find (and fund) a special carer....never underestimate the work of Social Workers (ie finding one that cares...usually most hospitals have one that has to answer to a higher board, and so are good), and they have (basically) answers for everything......sorry if all over the place, but trying to cover as much, within this short space, without boring anyone???....rolleyes   Bron
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