SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
How's life been?
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
521 members
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How's life been?

Well hello my second family,

I just wanted to see how everyone was doing. Any new developments for anyone stuck here in limbo land? How has everyone been? Any good news? It's always good to hear good news. Just in case everyone thinks I am just asking about health wise I am not I am asking in general.

Well here's my update. Life is slowly getting better. Every day God blessed me in a new way. I can see him constantly working in my life. My van passed the state inspection, and I may have a new job soon. Can't wait to be away from Taco Bell". I am still struggling finically but I trust things are gonna come together.

As for health wise, I went to see my neuro Thursday. I told him about the bullseye rash I believed I once had, and while he did state lymes disease doesn't exist in Texas, he is still doing a titer test to double check. It's not the most accurate wait to be dxs, but its a start. Well that's my update praying for everyone. Hope you all have a blessed weekend.

Kimberly
9 Comments
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You go, girl!  Do what it takes to get to a point where you can either get a diagnosis of Lyme or exclude it.

Here is the article about the professor at Texas A&M who found that a quarter of Texas ticks she tested were carrying Lyme Disease.  Print this and take it to your doctor.  (I am glad that he was willing to order a test for you.  Many people are told "No", because the doctor doesn't believe they have Lyme.)

http://www.myfoxhouston.com/story/18699227/lyme-disease

The Lyme titer is the screening test.  Unfortunately, it only measures the immune reaction to Lyme, not whether or not you have it.  Often, the sickest people show a low titer because their immune system isn't fighting it off much anymore. Sometimes people with a high titer aren't very sick at all.  That's because their immune system is in overdrive fighting the infection.  Unfortunately, most doctors don't understand this, and think a low result means little to no infection.

My first screening test result was 39.  Positive is 80 or higher.  My second result, at IGeneX, was 40, which they called "Equivocal".  Hopefully your screening test will be high enough to convince your doctor to run the Western Blot.  But most labs only show what's in the CDC surveillance criteria.  IGeneX shows more, which made all the difference for me. (You can get an IGeneX test kit shipped directly to you.  Then you just need to find a doctor willing to authorize it.)

I am glad life is slowly getting better. An experience with serious illness gives a new persective. It has certainly made me grateful for many things that I previously took for granted.


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Hi guys after my funny turn i have been ill cant seem to get better, with pain in legs, icy patches on thigh, and that darn rash has come back with a vengeance and hurts and itchys when it feels like it.

Otherwise i am fine lol.

I have done loads of xmas shopping on the internet and it just needs packing now.

Just waiting now for my doctor to talk to Porton Down in Salisbury to see if there is anything we should be doing to get a firm diagnosis of LYMES and how to really treat it.

I dont thin i can stomach taking antibiotics again after the reaction i had last week, not without proper support anyway.

Kimberly i am really pleased you are getting there hun. I am sure it is lymes and you get answers soon.

Big hugs to you all. mariaxxx
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Maria it sounds like you aren't giving up either. I am so glad to hear it, just remember sometimes to get to where you feel better you have to feel worse for a bit. I believe I am suffering for lymes too, and I am kind of worried whether my body can handle the treatment or not. I really hate taking antibotics for anything. But I will do what I have to.

You know I have only began to think of Christmas. I am hoping that before it gets here  I will have my new job and can afford to get my little ones some stuff. I bet it feels awesome to be almost done.

Well, I will be praying for you. But truly I know God is about to cure you completely. No more pain, rash or icy patches will bug you. You deserve more and will recieve it. Have a blessed day.

Kimberly

PS did you end up taking those steroids? If so how did that go?
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Hello Rico, I am truly trying to fight for answers this time. I will truly keep it in mind about the IGeneX test kit. If nothing comes from the titer test. But I am praying something comes of it. My neuro seems willing to hear me out, but at the same time I know he doesn't know enough about Lyme disease. He tried to tell me the bullseye rash can be caused by other bugs as well. I have researched a whole lot and can't find another bug that causes this type of rash. So, I may have to guide him in the right direction.

I will be printing that article, anything to help I. This journey I appreciate.

So, how are you doing. You encouraged me and gave me helpful advice. But didn't say anything about how your life has been. I pray your doing well. May God Be with you,

Kimberly
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Although I know I didn't say a lot, reading your comments gave me alot of strength to continue to figure this out.  I have been diagnosed with Cervical Stenosis, herniated disc, bone spurs etc. I am hoping this is causing my bag of weirdness. Also, my balance issues seem to be my overactive bladder meds. When my doctor switch a bladder med I was so dizzy I was afraid to drive. It dawned on me that it could be the meds.(maybe). I realize how many things can overlap. I still haven't figured it all out, but I will, just as you all will  

Maybe my diagnosis will help someone else. Cervical Stenosis does mimic MS. They do the same things to the nerves. I know my response comes late, but I hope you had a great Thanksgiving. I went to a water park with my family.  Could not go on the rides due to my dizziness,but I enjoyed watching my kids.  I'll keep you up to date and will be checking up on everyone to see how you are all doing with your Lyme treatments and symptom/diagnosis resolution. Your all in my prayers. Cheryl
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Hi Cheryl,
That is so good that you have gotten a dxs. It is also good to here that these forums helped you. I pray you also had a great Thanksgiving. I enjoyed the time I got with family over the holiday.

I know it's hard not being able to participate as much as you use to. But I can sympathize with how it was still fun to watch the kids having a good time. My two little ones are a blast to watch playing video games but the dizzy spells, headaches, and wrist pain/swelling makes it hard for me sometimes to join in.

Praying for you and all in this forum like always,
Kimberly
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Hi Cheryl.

Were you diagnosed with Cervical Spinal Stenosis
or Stenosis of the Cervix? Huge difference between these two.
Cervical Stenosis may pertain to the latter but I suspect
you are referring to Cervical Spinal Stenosis.
There are a few things you can do.
Search for Doctor John Sarno, a back pain expert and author of many books. Some of his information has helped me tremendously in the past.
There are YouTube clips you can checkout as well.

Look into deficiencies like low estrogen, low potassium. low magnesium
(tissue magnesium-not blood), low vitamin D for possible connection with your overactive bladder.
Meds may not work for this, as a matter of fact, they may present you with more issues, as you continue taking them, until the cause is found.
If the meds are just picked from a list, this would be BAD medicine!

Kregel exercises or physio may help if the urethra muscles are weakened.
Coconut oil (extra virgin organic) has helped me a lot with frequent urination
issues, but this was b/c of Benign Prostatic Hypeplacia, strictly a male issue.
Nonetheless, some ladies from my coconut group commented that it did help with their incontinence issues. Anecdotal evidence.

Thanksgiving wishes are never too late!
Thanksgiving, Christmas and other holidays do not expire the day after.
They are  available for celebrating the message they carry, when we choose to do so, every day of the year!
God Bless!
Niko
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Kimberly,
I hope all is going well with your new job.I'm lifting you in prayer daily.Keep your faith and your trust in the Lord. He is going to continue to take care of you.
Best wishes for you to feel better and get answers soon.
Hugs and blessings,
Tammy:)
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Thanks Tammy,

I am still waiting on the new job. This week I have no voice at all, so I am having a chance to listen more. I know it sounds odd but I think it's a good thing to be force to listen once and a while. Although it makes my job hard to do. I can't take orders, or call them out. Plus I can't delegate to well as manager either.

I am grateful for the prayer right now I truly need it. I have alot going on. I am always praying for you as we'll. You have been so kind. I know God must be with an angel like you. Stay strong and keep turning to him.
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