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I don't know if I qualify for even LimboLand!

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    I don't know if I qualify for even LimboLand!

    Hi everyone! I am a 37 y/o female from North Carolina and feel a bit like I'm in an episode of House . For a couple of years now I've had increasing issues with fatigue and memory/concentration. I had bloodwork done in November 2010 and found out my Vit. D was low (14) and likely had been for a number of years. Thought that would solve it, but it didn't. Then in late June 2011, my body freaked out and I had a whole bunch of symptoms start up almost simultaneously. At first I thought I was having kidney problems and went to a urologist...nope. Then gynecologist...nope. Then primary care...nope. Bloodwork out the wazoo, nothing wrong. Then I started to have some pain in my back (not muscular) so I went to the back doctor and he said I had some strain and degeneration. Aha! That must be the answer! The symptoms went away by September, except for the fatigue and cognition problems (they had gotten much worse during that period, and now went back to their prior level of "off" lol).

    Then in early December I noticed the problems starting to creep back in, and by the middle of December they were all back. So now off to primary care again, and he says my symptoms are puzzling and he's not really having an "Aha!" with them, but does mention MS. He orders an MRI with contrast of my brain and it comes back normal, along with all new bloodwork (normal as well). I ask for a neurology referral and he gladly gives it. I saw her last week and didn't really get a warm and fuzzy from her. She dismissed some of my symptoms as not being neurologic (I respectfully disagree) in nature and has ordered nerve studies that I will have next week. So I don't know what's going on with me, but since both of them mentioned MS here I am trying to educate myself. An acquaintance who has MS also said it sounded similar to what she went through.

    Here is the list of symptoms I've been having:

    --fatigue
    --cognitive problems (short-term memory malfunctions, focus/concentration problems, difficulty finding the right word, having to make effort to do something I would normally do as an almost automatic brain function--like driving or reading)
    --frequent, urgent urination
    --incontinence (small amounts, this one is new in the 2nd episode)
    --bowel problems (it's like the muscles don't work right, consistency is normal but alot of strain--also new for 2nd episode)
    --deep spasms in R leg (calf, outside of lower leg, arch). Usually when lying down, but also has happened when seated or standing. Sometimes so severe I get a grade 2 muscle strain.
    --smaller spasms or vibrations in both legs and sometimes forearms, followed by sore muscles (when using, not when touching). Sometimes sore muscles when waking, so I think it's happening in my sleep too. Sometimes accompanied by sharp, almost pinpoint pain in the muscle (esp. top of right calf muscle)
    --itching. OMG the itching. usually lasts 5-15 minutes then goes away, but occur sporadically like that over the course of several hours. Occurs just about everywhere but around the midsection and butt/upper thighs. Usually with a burning sensation and not relieved by scratching.
    --Feeling of pressure/numbness on one particular vertebra--not sure if it's high lumbar or low thoracic (forgot to ask doc)
    --waking for no reason/light sleeping (normally not a problem--I think it might be due to the aforementioned spasms)
    --numbness/tingling in arms, weakness in hands. Occurs in both, but only one at a time. Sometimes have drawing of pinky finger with it, but rarely. Sometimes arm jerk in sleep too.
    --more headaches than usual, and are different from what I'm used to. Most are just headaches, not migraines. I used to have hormone-related migraines but haven't had any in YEARS. The other night had all the hallmarks of one (aura, nausea, vomiting, feeling like pressure was crushing my head/neck inwards but no pain) but it was different than any I had ever had before.
    --random electric shock type pains, mostly R chest but sometimes R heel and arms
    --visual disturbances. This is really hard to describe, and maybe some of you can help me. I have had floaters, pinpoints, and loss of small field of vision...but I also have experienced another one that I don't know how to describe. It's like when you start to get tunnel vision at the beginning of an aura, but not that pronounced. It's more subtle. Kind of like when you look at really weird carpet or miniblinds and they throw your vision off? Everything is still in focus, but it seems like there's a subtle movement and also shading around the edges of my vision.
    --occasional dizziness

    Thanks for bearing with me, and even if in the long run it turns out I don't have MS, I am honored to have "met" all of you and your stories that I have read have touched my heart.

    #2
    blue - I just wanted to respond and wish you the very best and hope you don't become a regular here and I mean that in the nicest possible way!

    I'm too new to give advice and I was completely blindsided by my dx...I thought it was orthopaedic, not nuero related even though that's where the docs were heading...no one told me they suspected MS until I went to the neuro at Mayo Clinic.

    The rest as they say, is history.

    Good luck to you in finding answers!!
    Prob MS 9-14-04; Dx PPMS 9-16-11; RRMS 12-15-11
    Ampyra 10mg 2xday
    Copaxone 1/20/12

    Comment


      #3
      note to Blue129 - matching syptoms

      Dear blue129,

      I just left a friend’s home who said that her daughter’s friend was diagnosed with MS 10 years ago and has been treated for MS for that length of time. Symptoms kept getting worse moved to another state and different set of Drs. This new set of Dr’s says she was misdiagnosed and has lime disease. Might want to check those symptoms.
      What you typed fits me to a T.
      cognitive problems (short-term memory malfunctions…. CHECK focus/concentration problems, ….check
      frequent, urgent urination………check
      incontinence ……… check
      bowel problems …. Check…take fish oil to help. Would like to have a test done but Dr’s say since it’s bright red, nothing to worry about.
      deep spasms …. Leg can hurt for several days
      itching. Itch so much that I take skin on
      waking and not sleleping…………..this was the beginning. Chalked it up to going through the change………now I take a pill to sleep
      Occasional dizziness…..I’m dizzy ¾ of the time, worse around lots of people and in grocery store.

      Good luck with your trip done the lessons of life’s lane. Keep us all in the loop. Gorman

      Comment


        #4
        Thanks ladies! As an investigator/intel analyst by trade, I have an overabundance of curiosity and need for knowledge..just the way I'm wired .

        Thankfully I also have some medical training and background so I don't let myself get carried away, but I would much rather hear it from people who unfortunately have to deal with it (whatever "it" may be at this point) than from WebMD, know what I mean?

        To me, interacting with real people will give me a much clearer picture of the probabilities than any list of symptoms on some website.

        I looked at Lyme disease early on because my symptoms do match up with stage 3 of the disease, but the most common symptoms in stage 1 and 2 don't seem to match up, meaning I haven't experienced them within memory. None of stage 2, and it's been at least a couple of years since I had any flu-like symptoms. I'll double-check with my doc to see if he tested for the antibodies, though.

        Thanks for the welcome!

        Comment


          #5
          blue, I hope you find the finish line to a diagnosis at some point. This sounds maddening. We are here for ya.
          Dx: 2/3/12. 6-8 lesions right medulla/cervical spine. GLATIRAMER ACETATE 40 mg 1/19, medical marijuana 1/18. Modafinil 7/18, Women's multivitamin, Caltrate + D3, Iron, Vitamin C, Super B Complex, Probiotics, Magnesium, Biotin.

          Comment


            #6
            Blue- I can totally empathize with what you're experiencing. I consider myself one of the lucky ones- I got my diagnosis pretty quickly. I'm wondering about your cognitive issues- have you seen a neuropsychologist? I was tested and it definitely showed cognitive impairment for me- which is both frustrating (cause I still think I can do what I used to do even though I obviously can't) and a relief that there was an explanation for what I was experiencing cognitively.

            Good luck, keep us posted, and take care!

            Theresa
            Diagnosed June 2011, Avonex 7/11-12/11

            "We don't describe the world we see, we see the world we describe"

            Comment


              #7
              I haven't thought about cognitive testing. I guess I've been more focused on the "why" than the "what".

              For years, my work was much more physical than mental, but I made a change almost two years ago and now it's all mental. I've been having the tiredness (although not true fatigue like now) and cognitive issues for a few years, although I always chalked it up to shift work and poor sleep.

              When I switched jobs, I went to M-F, 9-5 with holidays off but the problems persisted and are worse during these "episodes". Even my mother, my boss, and my ex-husband have noticed.

              When I was in 7th grade, I took the SAT for Duke University's TIP. On the English portion, I scored in the 90th percentile of high school seniors. English and literature were always my favorite subjects and very, very easy for me. Now I dread the thought of reading a book .

              Comment


                #8
                HEY

                WELCOME. THE FOLKS HERE ARE WONDERFUL. I'VE BEEN LURKING ON AND OFF FOR SEVERAL YEARS WITH NO DX. MY 2 CENTS WORTH ARE LOW BLOOD CALCIUM (DIFFERENT THAN BONE), WHICH CAN LEAD TO LOW MAGNESIUM. WORTH CHECKING OUT-MY CARDIOLOGIST CHECKS THE CALCIUM BECAUSE I HAD A BIRTH DEFECT SO I AM FOREVER HERS, BUT IT WAS MY GP THAT CHECKED THE MAGNESIUM.

                ** Cut-and-pasted material removed per MSWorld Guidelines. **

                HOPE YOU FIND AND ANSWER SOON AND IT'S AN EASY ONE. JACKIE

                Comment


                  #9
                  Thanks Jackie . I've had extensive bloodwork over the last seven months or so to include calcium, magnesium, etc. and it was all normal. My GP even put me on B12 injections though it was within normal limits just to see if it would help (it didn't). He just ran everything again, and it all still looks good.

                  I've got my nerve studies on Tuesday, and I found a neurologist close by who specializes in MS who can get me in week after next (I made the appointment but if the nerve studies come okay I may cancel).

                  Comment


                    #10
                    Well had EMG done on right leg and right arm, and PNCV done on right arm this morning...with normal results. Neuro looked over my MRIs and concurred that they were normal and said "we're good at catching the bad stuff, and you don't have any of it." She did want me to have urodynamic testing done just to rule out neuro completely, but other than that really didn't have any advice.

                    So I'm probably gonna give up and just hope these symptoms go away and never come back! If they do, then back to square one I suppose.

                    Comment


                      #11
                      Congrats on the good news thus far -

                      Hope for all the best for you in the future ...............
                      Peace ~~ Kat

                      Comment


                        #12
                        Update! Possible Dx--not MS

                        Well we may have finally figured out what's been wrong with me. I haven't really had any symptom flares since February, although I still don't feel 100%--maybe 80%. I had been worked up for everything under the sun, and it was all coming back normal--until two weeks ago.

                        I was visiting my cousin, who is a physician in Alabama, and after listening to what I had been through he ran some additional bloodwork that had not been done.

                        I came positive for Rocky Mountain Spotted Fever. I never had the rash, but I live in an area where it is not uncommon and have a heavily wooded backyard. I also spend alot of time outdoors hiking, mountain biking, etc. Given the titer levels and symptoms, it is highly likely that RMSF or associated rickettsial illness is what I have been suffering from. I have started a round of doxycycline, and it is my understanding that complications can linger for quite some time, but I am thankful that I now have a probable answer. It will never be a 100% positive answer, but it's closer than anything I had before (which was "We dunno!").

                        Thank you all for lending an ear and support, and I wish you well on your journeys!

                        Comment


                          #13
                          Blue,

                          Thank you so much for letting us know how you came out on this! There are so many who come here suspecting MS, and then they go away...it's nice to know that they found out what was causing your sx and hopefully you can clear those up!!

                          Good luck to you.
                          Prob MS 9-14-04; Dx PPMS 9-16-11; RRMS 12-15-11
                          Ampyra 10mg 2xday
                          Copaxone 1/20/12

                          Comment


                            #14
                            New update

                            Just dropping in again to update on my new unofficial diagnosis. After seeing the infectious disease doc, he didn't think the RMSF was still the cause of all of my issues. So back to square one. This past week a series of events unfolded that led me to a rather unusual diagnosis, and perhaps it might apply to some in Limboland as well.

                            My ortho strongly believes I have Ehlers-Danlos Syndrome. I am adopted and therefore have no family medical history to drawn on, but the symptoms match up with what I have been experiencing. My entire life I have dealt with ortho injuries and "loose joints" and never thought it was connected to what I've been experiencing the last year. Well, whaddya know lol. She has me scheduled with a geneticist but it will be several months until my appointment. In the meantime, I start physical therapy tomorrow. I wish you all well in your journeys.

                            Comment

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