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Its like doctors have no clue....

Posted , 11 users are following.

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Guest

They all seem to think that your throat and lymph nodes HAVE to be involved. That this can go on longer than just a few weeks. It is like they only know the text book mono symptoms and that is it. Went to the ER last night after falling asleep for two hours and waking up with sweats and a rapid heart rate. They ran blood tests and checked my heart. My calcium levels are his so that is something I need to discuss with my regular physician but the ER doctor made it sound like all of my symptoms must be something other than mono and was shocked when I told him I never presented with "normal" symptoms. He said my weight loss and loss of appetite aren't normal if my throat isn't involved. That 8 weeks is too long. So now I am freaking out and once again heading to my regular doctor today. Did anyone else have sleep where you could only sleep for a couple of hours and awoke sweating with a racing heart rate? This has been going for a week. 

2 likes, 43 replies

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  • craig07920
    craig07920 Guest

    Posted

    Hi Wendi,

    So sorry to hear you're having the issues with sleep and racing heart rate. It must be so frustrating when you just want to rest as well and have a peaceful sleep. Remember that you will get better Wendi, you will get through this. You are absolutley right about the doctors, most of them I think say everything should be fine in 4-6 weeks or 6-8 weeks, but in reality it can go on for longer for a lot of people - and this is normal and then it is normal to go on and make a full recovery still. Hang in there today and hoping for a better day for you, thinking about you.

    Craig

  • kikisan
    kikisan Guest

    Posted

    Hi Wendi,

    I can relate to how you are feeling. I have not been sleeping for 3 months. I have never taken medication in my life but am now taking a prescription sleeping aid every night to knock me out so I at least get 4 hours. I have been sick with so many symptoms that started with tonsil throat and mouth involvement followed by a splitting, unceasing headache, shortness of breath, chest tightness and pain along with pins and needles in my hands and legs. 

    I went to my infectious disease doc yesterday who said I looked like I was recovering. He clearly doesn't really know me as I have lost 8 pounds...I am tiny to begin with. He checked my spleen and said it was slightly enlarged so I am going to get an ultrasound. Regarding my blood work - all normal, however my white blood cells in detail (CD4 and CD8 lymphocyte subsets could shed light on my slower than normal recovery. My CD8 level is a bit low although he didn't seem overly concerned. I repeated the detailed blood test to see if there are any changes. I do wonder if he is interpreting it correctly and may want to get another opinion. 

    I went to a neurologist for the first time yesterday who said that he is quite confident that there is no neurological disease process happening although he ordered an MRI for my peace of mind. 

    I am doing everything I can within the healthcare system here in Toronto, Canada. I worry that there is some test that I am not doing. I was so fit and healthy in December as I have been for most of my 48years. It is incredible how my health has been so undermined. 

    Wendi, I really feel for you...how long ago were you diagnosed with mono?

    Kiki

    Stay positive 

     

    • Guest
      Guest kikisan

      Posted

      I was diagnosed about 4 weeks ago or so after suffering with symptoms for about 3 to 4 weeks prior. I too was fit before this hit. I am 52. I have lost just about 20 pounds now in the 8 weeks I have had it. It was weight I didn't want to lose but I am still within normal range. Another 5 or so and I will be tipping in at underweight. I had an enlarged liver not spleen. It is back to normal now. I am seriously at a loss as to what to do anymore. sad

    • kikisan
      kikisan Guest

      Posted

      Wendi....I really commiserate with your situation. I was on the low side of normal weight, so cannot afford to lose even one pound...it's so frustrating to get so little information about what is going on and what to do. My ID doc told me to eat a steak and have a glass of red wine!...I think he was just giving me some emotional support but I need a better answer than that. I think we both have to support our immune systems as best we can and be OK with some uncertainty....I am thinking of you and wish that both of our immune systems are building antibodies every day. x

    • brent_83487
      brent_83487 kikisan

      Posted

      I contracted the virus at 47. Everything you are going through I went through also. My advice is to rest as much as you can. I made the mistake of pushing through it. Some activity is good, but you have to listen to your body. I probably have cfs. It is a long process this virus. The older you are the worse it is.
    • Guest
      Guest brent_83487

      Posted

      How much activity did you do? Exercise for example?
    • brent_83487
      brent_83487 Guest

      Posted

      I worked through most of it. I would take a few weeks off at a time, but I went through a divorce while sick . I had to have money to support my son. I am still struggling physically because of it. Drama, stress and worry just make this illness worse. If you can relax and do some movement every day. Not moving at all is not good for your muscles.
    • Guest
      Guest brent_83487

      Posted

      I’m so sorry you had to go through this virus and a divorce at once.

      I’ve noticed that stress does indeed make the symptoms worse.

      It seems to feed off of the stress. 

    • kikisan
      kikisan brent_83487

      Posted

      Hi Brent....you have been through so much and I know not being in our 20's makes it harder. I do not have kids - only an amazing job that I am pained to let go of now - but as you say, if one doesn't have to push through, one shouldn't. After 3 months I am accepting that this may take some time....if I may ask, how long have you been unwell?.....I hope you are seeing some improvements?...I think your advice for some exercise, even if small movements is good...I will start prioritizing that in my routine...

    • Guest
      Guest brent_83487

      Posted

      I realized when I tried to maintain some semblance of normal I would get worse. Totally get it. And I agree that the older you are the more it sucks sad
    • Guest
      Guest brent_83487

      Posted

      I am so sorry you had to endure this under those circumstances Brent sad
    • brent_83487
      brent_83487 kikisan

      Posted

      I have been dealing with this for over a year and a half, maybe a little longer. I have some improvements, but some things are still lingering. I still have to work everyday because of being a single parent with Mortage, bills etc. I was always a strong person and I thought that this illness was just a bump in the road. I was wrong. The more I said I will be better in a week, the worse I got. My mind was stronger than my body. Your mind can make you soilder on, but eventually your body will shut down and be damaged. Then they call it cfs.
    • craig07920
      craig07920 brent_83487

      Posted

      My thoughts are still with you Brent, problems on top of the illness just make things so much worse. I know that myself from my back trouble right now, I feel so out of alignment and my posture so poor and muscles so tight, and it's made worse worrying about my work situation. Just praying things get bettter for you Brent, suffering is the most terrifying thing and just praying for peace and new strength in your life and for God's hand to move on your behalf and in your life.

      Craig

    • brent_83487
      brent_83487 craig07920

      Posted

      Thank you for your support. I pray that you will improve. You have helped so many people on this site.
    • craig07920
      craig07920 brent_83487

      Posted

      Thanks so much Brent, your prayers mean everything to me. I pray that you will improve too, in pray in Jesus' name that the angels can come upon you with healing in their wings Brent and protect you and give you new strength and hope and healing. God is working in your situation Brent, I truly believe that today and that God wants you to know that He knows you by name as sees your pain and wants you to know that He's with you even if you can't feel it right now, He's with you and won't leave you and is working on the most marvellous breakthrough in your life that will turn things around for the better.

      Take care and thinking of you today,

      Craig

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