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  • Feel Like A Hypochondriac

    Hi, my name is Melissa, I'm 30 and was diagnosed with IC 7 years ago but suffered with it for 13 years. After having my baby in 2002, I had been in remission (woo-hoo!) but it has finally ended and here to irritate me again. Anyhow, I seem to have a lot of other issues which have been plaguing me between 1-2 years now. I am SO tired of running from dr to dr and test after test and getting absolutely nowhere. It's exhausting and after awhile doctors just brush you off, so I'm ready to give up telling doctors anything anymore. I am not looking for a diagnosis here, no-no-no, but what I am hoping for is if I list my symptoms, perhaps someone here can lead me in the right direction, as to what doctor I should begin with. I am tired of the run-around. My doctor has no problem referring me but she likes to run test after test and all of them come out fine. So after looking at my symptoms, if someone has had similar symptoms perhaps you could give me a lead on what type of doctor to go to? Thanks, here we go:
    ~Mucsle Weakness (on & off)
    ~Mucsle & Joint Pain
    ~"Heat Spots" (as I describe it because it suddenly feels like something very hot under my skin and then goes away...and it usually in areas of my legs)
    ~A sudden shivery feeling that runs through my body & dissapears.
    ~Sudden fatigue (I instantly get so tired that its hard to even keep my eyes open).
    ~At times, my vision seems to "fade" but comes right back. Eye dr said nothing is wrong with my eyes.
    ~Light-headedness! Oh, this is sickening. It's so often.
    ~I get a dull ache, to a sharp pain, to a spasm pain in the entire area near right kidney and right ovary. I've had kidney stones and ovarian cysts, neither of which are the cause of this pain. But dr says there's nothing wrong.
    I have really bad allergies & get 4 allergy shots at a time, plus IBS - which I know are common to IC sufferers. My BP is low, but it's apparently normal for me. I just had a blood test for my yearly physical and everything came back good, but my creatine (or creatinine) was low yet still just made it into the good range.
    Does any of this sound familiar to anyone?
    Thanks in advance. I just don't know where to go anymore.
    Melissa

  • #2
    Have you checked to see if its fibromalgia... You have alot of the symptoms..


    What are the symptoms?
    The main fibromyalgia symptoms are the presence of multiple tender points, fatigue and extensive, chronic pain in the tissues of the muscles, tendons (which connect muscle to bone) and ligaments (which connect bones, muscles and tendons).
    Additional symptoms may include: Irritable bowel and bladder, headaches, facial pain and migraines, restless legs syndrome, impaired memory and concentration, skin sensitivities and rashes, dry eyes dry mouth, anxiety, depression, impaired coordination, dizziness, vision problems, heightened sensitivity to odors, noise, light, touch and weather change. All fibromyalgia symptoms can be made worse by stress
    Hugs
    Ronda

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


    Link to Patient Handbook:
    http://www.ic-network.com/handbook/

    Diet Reference Sheet:
    http://www.ic-network.com/diet/icndi...tsheet0909.pdf

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



    ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Comment


    • #3
      A Rheumatologist will help you with dx for fibromalgia or figure out what is causing the joint pain.

      You mentioned low blood pressure, do you have low heart rate (Bradycardia) too? Bradycardia could cause the "fainting" feeling. Take your pulse for a full minute next time you feel light-headed. If it's under 60, it could be Bradycardia. This would be dx by a Cardiologist.

      Good Luck!
      ~Diane
      dx: Spastic Bladder, chronic hematuria (that went away?), kidney stone... possible IC

      Medical History:
      c-sections: 1988, 1991, 1997
      Viral Arthritis 1998 (Like RA, but went away!! )
      Pterygium & Dry Eyes since 2005
      Hysterectomy (Fibroids) 2006

      ~~~~~~~~~~~~~~~~~~~~~~~~~

      Me & Jerry ~ Sammy & Ryan
      ~~~~~~~~~~~~~~~~~~~~~~~~~

      Comment


      • #4
        Hi Melissa

        Mellissa,

        Has your dr referred you to an neurologist and an endocrinologist? An endocrinologist could rule-out things like adrenal cortical hypofunction or some other endocrine disease such as hypothyroidism. A neurologist could rule-out things like MS. A rheumatologist could check you out for fibromyalgia or chronic fatigue syndrome. What kind of specialists have you been sent to? Your symptoms are very varied - there must be an explanation. It might be more than one thing. You could do an Internet search on a reliable site to check out the symptoms of some of these problems.

        Best of luck.

        Kathy

        Comment


        • #5
          Thanks

          Thanks for all the info. I will speak with my Dr to get referrals. I haven't been to any specialists for the muscle & joint problems becuase I had to switch primary care physicians. The first one gave me cortisone shots in my knees which I can't really say helped, then shortly after he didn't take my ins. anymore. My new dr likes to run their own tests first of course, and would like to test me for MS but I'm really doubtful of that. If I ask for referrals, they usually have no problem giving them, but I needed to know what sort of specialist to start with.
          I saw my gyn and uro for the flank pain, and had something nephrosis plus ovarian cysts, but both are ok now and yet I still experience pain in both areas. When I complained, they both said there is nothing they can find there. I don't dare go back and complain again. My BP is low, sometimes 74/48 and other times it goes up to 82/57, but they said my heart rate is normal and so the BP is normal for me.
          Thanks for all of your suggestions, I will begin seeking referrals!

          Comment


          • #6
            Wow - you are the first person I have seen that has the same "hot spot" symptom as I have had. It is usually on my left leg and near the upper part of my thigh (front). It comes along for a short while and then disapears. I haven't been to the doctor about it but have many of the same symptoms as you. Please keep us posted when you finally get a diagnosis.
            hugs,
            Janie

            Comment


            • #7
              Hmmm... that could be a lot of things.

              I have quite a few of those symptoms with my fibromyalgia and myofascial pain syndrome -- these are some things that you might want to research a little. However, the ladies' suggestions have been good. It's always best to see a doctor; in your case, maybe a rheumatologist first?

              I'm not really sure, since I was actually diagnosed with fibro by a previous urologist, believe it or not -- she was wonderful since she also believed in treating conditions that went along with IC (like IBS and fibro).
              ****
              Jen

              *Diagnosed with severe IC in 2004
              *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
              *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
              *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

              **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

              Comment


              • #8
                Originally posted by Janie Miranda View Post
                Wow - you are the first person I have seen that has the same "hot spot" symptom as I have had. It is usually on my left leg and near the upper part of my thigh (front).
                YES! YES! That's usually the exact same spot as me. My GP wants to see me about this again FIRST before referring me to a rheumatologist. I was surprised, they don't usually give me a problem with it. I'd rather just skip the GP becuase they'll run a round of tests and months later decided they have no clue and refer me somewhere. Oh well. When and IF I ever find out the cause of it, I'll let you know!
                Melissa

                Comment


                • #9
                  Hi Melissa,
                  Thanks so much for asking these questions and listing your symptons. I too have been feeling this way and I am seeing my urologist on Thursday for follow up from a hydro. I am going to see what he says but I too am tired of being brushed off and if I get it this time I will just take it into my own hands and go see another doctor. I hope that you get the answers you are looking for? I will keep in touch and you please do the same!

                  Comment


                  • #10
                    Got A Diagnosis

                    Fibromyalgia. I feel relieved now that I actually have a diagnosis. He's trying me on Effexor for anxiety but so far I'm on day 2 and can't sleep. He also referred me to a church. I'm not kidding. He wants me to pick up a different religion and go to the church.

                    Thanks everybody for your information!

                    Comment


                    • #11
                      I am not trying to scare you but I feel you need to rule out MS. I have it as well as IC. I have many of the same symptoms. I more believe you have Fibro but it would not hurt to cover anything that it could be. I don't have a severe kind of MS (there are many different kinds) I really care about you. Keep us informed. Ziggy

                      Comment


                      • #12
                        I'm glad you finally have a diagnosis. Not knowing is the worst possible time.

                        Sending healing thoughts,
                        Donna
                        Stay safe


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                        I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                        [3MG]

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                        Comment


                        • #13
                          Isn't MS only heriditary though? There's no line of it in my family.

                          Comment


                          • #14
                            Hello Melissa. Since you have a diagnosis of fibromyalgia, I'd go with that and do all you can to get relief. If the Doctor is any good, he would have thought to rule out MS already. There is no line of MS in my family either that I know of. There is a point where we just have to trust our Doctors. From what I have read here, Fibro and IC often hit many people together. I Pray you get relief soon. Ziggy

                            Comment


                            • #15
                              I agree about getting MS ruled out. That's the only way to have a positive fibro diagnosis ---by ruling out EVERYTHING else, and that includes MS. I went to a neurologist at one time for the numbness and tingling I was having in my hands and feet, and they did an EMG which is basically where they shock muscles in the arms and legs, and hands/feet. It's NOT a fun test, but it really should be done just to have everything that it "might" be ruled out.

                              I know how you feel. I went from doctor to doctor to doctor quite a while before I was finally taken seriously, and had everything else ruled out.

                              By the way, he referred you to a church?? What kind of doctor does that? It reminds me of the doctor that tried to sell me a book on his own theory of psychobabble that my pain was a symptom of "stress" that I've built up since I was a toddler! No joke....

                              I do think I've heard it all now!
                              *IC-- Summer 2004; PFD--October 2005
                              *Fibro--Fall 2000; CFS-- Fall 2000
                              *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                              Total Abdominal Hysterectomy--adenomyosis--9\08

                              04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

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