SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
LLMD appointment tomorrow
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

Founded by MrsAristotle on October 2, 2009
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LLMD appointment tomorrow

Sorry I have seemingly been scarce for awhile. I have been reading everything, just not contributing .Seeing that MS Dx in the specialists notes put me into an odd frame of mind. It's not that I was truly shocked or anything, but it still kind of felt like reality bit me in the butt!

I got my clearance to go back to work and fortunately they revived the board that allows me to work only 1 day per week. I've only worked once, but I was gone from 1:00 am til 3:30 pm. I am so glad I don't have to be on call 24/7 anymore!

I am still hopeful that getting to the bottom of the Lyme question could be a big step in getting my issues under control. The fact that I frequently run fevers of between 99.5 - 100.5 and occasionally higher just seems to me like it needs to be dealt with and no other doctor shows any interest in pursuing the answer as to why after a few normal blood tests! I noticed we have a new member who also mentioned long term fevers. Also, I have a lot of the symptoms of hypothyroid but test fine by the standard T4 test. I'm hoping the LLMD doctor will be willing to consider that I may underconvert it to T3. Maybe the Lyme/co-infections would account for the higher body temp, which I didn't have until 2002 after working on a forest fire for 2 weeks. Up until then, I consistently had low body temp.

I did get my Neuro Psych results back. They proclaimed me normal :) The only things they picked up on were "mild to moderately impaired in the categories of selective attention and complex divided attention" which I interpret as multitasking and freely admit to. Also I scored below average on 'immediate shape recognition' but I knew that was going to happen due to their poor directions on that part of the test. One interesting fact was that I scored at the 50th percentile on a reading comprehension test. I have never scored below the 95th percentile......and I NEVER took a reading comprehension test there. The company doctor seemed quite interested in that, too, and even asked  me specifically about it. It is kind of weird for your company to have copies of your SAT and Achievement Test scores (they do a VERY complete background check on employees) but in this case I think it may be useful in determining if that medical office is billing for tests they didn't perform.

I was supposed to have done my MRIs on 4/19, but my insurance got messed up by someone in HR and they couldn't get the authorization. It took over a week to straighten out. I was doing my best to not stress about it, and I did a better job of ACTING like I wasn't stressed about it than actually not being stressed. I hope I can improve my ability to truly not stress. I ended up dealing with a lot of pain in my right eye, some color saturation issues again, which would get me immediately fired if my company found out that I have difficulty telling red lights from yellow lights at times, especially at a distance! Do any of the rest of you w/ ON have that issue? And I got one mosquito bite and ended up with a rash from my ankle to 1/2 way up my thigh. I don't know if that counts as a psuedo or a mild flair?
9 Comments
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551343_tn?1350880995
Hi i wondered where you were.

When I had my ON (which wasnt diagnosed at the time), I had terrible pain in my eye really bad sometimes it would shoot into my eyeball. I also found some colours on the T.V. did not look right and was always trying to adjust things.

Glad your physc results were fine.

What is an LLMD appointment? I dont recognise the abbreviations sorry being a bit dense lol.

Mike my husband is back ill again and having to have urgent endoscophy and full body scan.

big hugs. maria
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2012515_tn?1353879125
Good morning Val,
I am also glad your appt went well other than big change w/reading comp.:(
It seems as if things at work are going in your favor working 1 day a week but hopefully it won't always be 15hrs a day.

I'll be lifting you in prayer about Lyme test and w/upcoming MRI. I hope they resched.soon.
????Did you say you do have MS dx?

I'm the same as Maria, I do not recognize LLMD.

Glad to see you around here.:)
Have a blessed day!
Hugs and blessings,
Tammy:)

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An LLMD is a Lyme Literate Medical Doctor.  

It is a term used by patients, not necessarily the doctors themselves.  The good ones are affiliated with ILADS, a group of doctors of various specialties who believe Lyme Disease and its coinfections are much more complex and common than the establishment doctors say.  They are criticized as not following science, but in reality, there is a lot of excellent science behind their assertions that Lyme testing interpretation is often inaccurate, that Lyme can persist following treatment with antibiotics, and that the disease presentation and symptoms are far more varied than was believed earlier.  There is a shocking controversy in the medical community over Lyme and patients suffer as a result.

Many Lyme patients have to seek out these Lyme Literate doctors on our own, because so many doctors fail to recognize the late stage symptoms, and/or don't know how to treat it.
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1475492_tn?1332887767
Hi Val, sounds like you are inching forward and doing well. That is good news!

Regarding ON? Pinks show to be more of a purple tone. Reds look darker in one eye vs the other. One thing I noticed which was weird was my right eye seemed to look like a shade came down over it. Like it was filtered through grey. Kinda blurry as well. The pain was behind my eye in the orbit and I'd rate it an 8 but I hear that those symptoms vary with each person. I have a scotoma now in the center of my field of vision now too.

I wish you the best...
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1917408_tn?1329427500
Maria,

I hope your husband is okay! He has had more than his share of health issues lately, too. I didn't even notice the color issues at first. I just couldn't understand why the engineer I was working w/ last fall could see the signals (color-wise) so much earlier than I could, with his thick glasses. My saturation issues seem to be much worse w/ the distance factor thrown in. Both yellow and red look kind of orange!

Tammy,

Thank you for your prayers! I definitely don't think I have had a change in my reading comp, (except on my absolute worst days combined w/ exhaustion) but since I didn't even take a test like that, I'm just not sure if that was an innocent mistake on their part, or intentionally billing for tests they didn't perform. I guess they can always claim short term memory loss on my part :)P   I don't really know whether to consider the Dx in the doctor's notes official or what. He didn't TELL me I had MS, it just seemed pretty odd to put it in his notes. But I did tell him I would rather wait for the MRI's which are rescheduled for 5/5 to ask any questions. I don't know if that could have contributed to him NOT telling me?

Ricobard,

Thank you for clarifying my terminology and the whole Lyme issue! Niko has mentioned the term on this forum several times and I didn't realize I would be confusing people. :)

Sidesteps,

'Inching forward' is very well put! I would much rather sprint, but I'm trying to learn patience :)   That is very interesting that the tonal difference can vary so much person to person. Red just washes out for me 'til it looks like an unripe tomato. I would much prefer the purple tone in my line of work, with a vehicle that takes more than 1/2 a mile to stop, my custom version of color issues couldn't get much worse! I was wondering specifically about the distance issue, but the more I think about it, most people probably don't try so hard to differentiate color at such a distance. Good thing I'm not too attached to this career! The pain thankfully hasn't approached the top of the pain scale for me since about January. Unfortunately it also seems to be the symptom most likely to recur for me. Again, probably my last choice, too bad we don't get to choose! My blurriness reminded me of looking through glasses with a fingerprint on them. I have a mild scotoma, too but at least it is in my peripheral vision, right where I need to have good vision to watch for deer and antelope while driving and that is a real problem where I live. It was noticeable yesterday in city traffic, too. I sure hope some healing occurs with that, but I assume the odds are not good as long as it has gone on, now.

Thanks guys! I think this Lyme path is worth pursuing. I am at least feeling hopeful at this point.  
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How was your appointment with the LLMD.?  Did you have to travel far?
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2034625_tn?1392646892
Val, sorry you're having color issues.  I had that awhile back and can't imagine needing to drive.  I had the shade over one eye thing going on too that Sidesteps described.  Is your doctor addressing the eye problems?  

I hope it gets better for you soon...

Laura
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1627868_tn?1333889942
Sorry I missed this post.  How did the appt go?  Are they doing anything for the eye issues?  Or don't you want to tell them due to your job?

Hope all is going well!
Love and hugs!
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1917408_tn?1329427500
I have had a difficult time responding to this post. I tried it the first time about 4/28 and my computer battery died w/o warning and I lost it. I have been horribly busy, so I didn't try again for several days and then I got a message saying the site was having a "periodic check-up" and my post disappeared again, grrrr! I've been taking a lot of senior pictures for the procrastinators that waited until the last minute (May 7) but I am finally caught up! At least until I have to go back to work on Wed/Thurs. Last week I didn't even come home because I knew I was going to be called on duty again w/i 10 hours. My manager got quite upset over the fact that I had so many hours on duty when I don't think anyone familiar w/ my case is all that comfortable w/ me being at work in the first place. I could have called the Safety Hotline on gone over the head of the Manpower manager if I actually felt 'endangered', but strangely enough I actually felt pretty decent. I have been paying a price for overdoing it since then, though.

I did get a good opportunity to test my theory w/ the color saturation issue. I suspected that since my right eye (my bad one) is my dominant eye, I think that dominance factor is a big reason why I perceive color at a distance as washed out so much. Looking w/ both eyes at a signal at moderate to long distance it seems just as washed out as if I was only looking through my right eye, but if I close my right eye the color is more accurate. I still don't understand why this is so closely tied to distance. I can differentiate the colors at a normal distance for a car, just not at a safe distance for a train. One picture that I retouched while I was truly exhausted was very interesting though. I thought the sky looked washed out and ugly, so I airbrushed it and thought it looked nice and blue when I was finished, but when I looked at it again once I was rested and feeling better, I had turned the sky a lovely shade of lavender!

I have mentioned my eye issues to the doctors that I personally chose, as opposed to the ones my company sent me to. I have an appointment w/ the Optic Neurologist at the MS center on 7/9, but I wish he had better patient ratings. There don't seem to be a lot of choices in my area! I think the only thing they can do about ON is to offer IV Steroids, isn't it? I am not comfortable w/ steroids at all: they are totally contraindicated if I have Lyme's or really any other ongoing infection and since I definitely have an ongoing fever I think it is safe to assume that I have SOME sort of infection. And the bone loss issues really worry me, too. My hobbies are mostly of the variety that carry high risk for bone trauma, high speed equine sports, downhill skiing, and various motor sport racing. IF I ever get these problems under control, I would like to be able to engage in my hobbies w/o elevated risk for broken bones. I guess I need to at least find out for sure what is responsible for my vision issue, just in case it is something else more treatable, and if not taking steroids puts my vision at greater risk.
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