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Anyone else sick of limboland?

Posted , 4 users are following.

lilleecoops
lilleecoops

Hi all,

I am new here, *newby wave to all* and I am a LimboLander. I have been dx as "Possible M.S" for the last two years and yep like alot of us LimboLanders frustration is a right pain!

I have had numerous MRI of both brain and spine, a spinal tap, and a whole board of symptoms that I feel my neuro just isn't paying attention to.. eg: numb fingers, buzzing in my fingers when lowering my head to my chest. dull leg like heaviness on one side (left) blurry vision from time to time, numb toes that then went to numb foot (whole left side of my foot and under my foot went numb to the ankle) foot cramping and toe cramping, leg stiffness around hip and front of thigh and so on and so on, I imagine others in limbo land get the picture. I have numerous white matter lesions on the brain that demonstrates demylination all in the areas indicative to M.S and at one point was hospitalised because of some of these symptoms for a whole week.. which I believe was my first attack. I do not show anything in my spine MRI but have (I can't remember what it was called) a positive extra something in my spinal tap.

I am due another MRI on the 1st of June because I had something going on with my Trigeminal nerve that they could not pin down to dental problems.. I am beyond thinking I am crazy.. yes I went through that phaze, now I just truely believe it is M.S but the doctors need to catch up. It has been 2 years now, how long does it take to get a diagnosis?

very frustrating indeed

1 like, 4 replies

4 Replies

  • wendy80842
    wendy80842 lilleecoops

    Posted

    Hi, sorry you're going through'limboland', I could tell you what I remember about being there, but I imagine that my swearing would be frowned upon. When they look at lumbar puncture samples, I believe that it's oligoclonic bands that they're looking for.

    Your neurologist seems a bit dense, no two of us present the same way. Our LP samples can be clear in between relapses, we just aren't predictable, but any neurologist worth anything should have the b***$ to make a bloody diagnosis. Keep a written/typed record of what's happening to you, it's useful for medical appointments. I recommend punching the hell out of cushions, vent some of your frustration. Remember, there are very many of us who recognise what you're dealing with.

  • lilleecoops
    lilleecoops

    Posted

    Hi Wendy,

    Thanks for replying. The high thing in my cfs test was antibodies,

    my dr's were concerned that the reading was higher than it should be.

    I don't know what else I have to do to get a definate diagnosis. My neuro

    From the start said possible M.S, but the radiologist changed her mind

    saying small veins in the brain, but this they arent even sure of because

    I am not showing any classic symptoms of this, (namely, horrible headaches).

    Before that they thought it was my thyroid, but my thyroid levels are normal

    now and I am still having the same symptoms with new symptoms. I have had

    everything, from parathesia in the limbs, muscle cramping, very bad pain,

    like constriction around my chest/ribs enough to make it soo hard to breathe,

    facial palsy, trigeminal nerve pain and numbness, problems swallowing small

    things like tablets, rice etc, twitching, pins n needles, the itching and feeling like

    something is crawling on my skin, cognative and memory problems...and now muscle cramping, dead leg and muscle tightness on one side of my body.

    I just feel

    the neuro is behind and not catching up, all because of the radiologist suggestion.

    I've heard of people having M.S for years but only being properly diagnosed when

    symptoms get progressively worse. I don't want that, I don't want to wait till it

    gets worse. For one, I can't afford it, I am one wage between two people, and

    need my job to continue to live, I care for my partner who cannot work, so if things

    get worse without treatment it will be a financial burden to the extreme if I

    cannot work. Sigh, I just want to slap my dr's and say get it together guys, and

    lets do something about this! I am frustrated but not stressed, I am following all

    their treatment/tests, it's just my patience is wearing a little thin now.

    Indeed swearing would be inappropriate, but I too could cuss a little because of this lol

    Thanks again for replying smile

    Stitch.

    • littlemissfixit
      littlemissfixit lilleecoops

      Posted

      Hi, new here too, and right there in limboland for a year and a half so far. You describe it perfectly completely frustrated but somehow just calmly keeping going, what other choice have we got. Some days I think Im just going crazy, others I am certain something is very wrong. For me it started with tingling in hands (mostly left), to which I paid little attention, then I had bad fatigue, exhauted my mind seemed foggy all the time. It took about 6 months before I went to GP, had several blood test which were all normal, I have underactive thyroid which is under control for the past 15 years. I was disappointed when that wasnt the problem, it would have been simple. Then I started having blurred vision left eye, shaky/weak left hand, crawling feeling up my back, very painful thightness of ribcage, and a spot on my left leg which would feel wet even though it wasnt. I was put on a waiting list for MRI, which I had several months after onset of these symptoms, and at a time where I felt quite good. Was very put out by neurologist who took very few notes, asked very few questions, did very few tests before ordering MRI. Letter came that brain was entirely normal, which was a great relief. Only that was it and I still feel like crap. Had to go back to GP for routine thyroid, more blood test and another referral to neuro. I have now a very weak left arm, both my hands are very stiff in morning especially, have numbness, have had severe burning pain where evn the touch of clothes on my skin is too much, twitching in my face and severe pain on left side of my face (that could be sinuses, sometimes I wonder am I overthinking all this), more worryingly I've recently have more symptoms in my right hand and arm. I suppose I am worried I have something that is slowly progressing and all I am doing about it is wait months after months between one test and another. Just over a year ago I would go running few times a week, now if I attempt even a 10 min jog Im exhausted and in pain for days, so I walk, 20 min as often as I can.

      And now on top of my frustration, I feel like a right moaner! wink

  • eva10587
    eva10587 lilleecoops

    Posted

    Hi.I too am still in limboland. My first neurologist was a quack. The second one is 95% sure I have ms. He insists on a lumbar puncture before diagnosis though. Monday is my lumbar puncture. Won't get results until September 1st. I've had so much blood work and tests that I'm tired of it all. I have lesions and clinical signs and tons of symptoms. I have foot drop, paresthesia,nerve pain,spasticity,cramps,positive babinski,l'hermite's sign, heat zaps my strength and brings on crushing pain around ribs(hug), and provokes spasms/cramps. My right arm is numb/tingly and hurts. Right foot is numb. Only abnormal tests are esr 24 and crp 29(inflammatory markers).

    I had an episode 2 years ago that waa diagnosed as gallstones that lasted a month. Had no signs of systemic illness or signs of gallbladder problems. I had pain but no fever or bowel issues no sensitivity to high fat foods,etc. The same rib pain comes on now when i get too hot. I believe that was my initial relapse! I took nothing for my gallbladder,just pain meds and one day woke up to the pain being gone. All was well for 2 years.Now i drag my right foot and can barely walk. Also have brain fog

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