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Searching for answers to the possibilitys (MS,Lyme,Arthritis,Diabetes...).Dr's seem to be of NO help

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Posted 6/9/2013 7:07 PM (GMT 0)
Not really sure how this forum works, meaning do LYME folks read MS post or MS folks read LYME posts and such so I decided to read more on the LYME section of the forum.
I have had the ELISA Lyme test it was negative, But living way up here in Maine where we have more ticks per square inch than people per square mile (25 yrs ago they were amost non existant).
I definnatly cant rule it out. 

Thanks Cali Cat & Opugirl.

If any one that has LYME and these issues sound familiar or anyone can relate and  has any helpful soulutions

It would be greatly appreciated.
All I really know is this is not normal and my issues are getting worse.
Doctors want to just cram pills down my throat or pass it off as nothing serious.

First post and sorry if this is'nt the right place to ask this question.

A little about my condition.

Up until about 5-6 yrs ago I was able to walk/sit without issues. But now I have trouble walking/sitting without discomfort (very sore feet tired legs).
After being on my feet for any lenght of time (45mins-1 hr) my right leg seems to give out(like stepping in a hole) some days more than others. There's no pain but is very frustrating.
And to add after being on my feet after an hr or so (some days better than others) but always end up with my legs kinda feezing up and severe pain in my lower back and have to revert to baby steps.
Neuro doc said it was a weight issue (seeing a nutrionist) and after much arguing was sent to a spine specialist ten minutes into visit Dr says this is not a weight issue (epidural lipomatosis) 1 week later I had sugery to remove what they thought was the issue (no relief from issues).
Fast forward 6 months spine Dr sends me for steroid shot couple days of relief but back to same issues.
Sugurey was 7 months ago.

Now the reason for posting here and now.
My mother has a friend whos son was just diagnosed with MS (roughly my age). So apparently whilst their talking about the issues he has, it was brought to my attention. So researching I went, and after reading many of the symptoms and issues of MS and thinking back I have the following issues....eyepain,floating white spots,double vision,head aches,sore feet,complete left side numbness,legs giving out(still do),pins and needles in my hands and feet (still do),limb weakness,severe fatigue,Gerd,trouble remembering things,slurred speach,joint pain, im sure there's more maybe i should write them all down.
 
A sense of urgency has appeared as too what is going on with the issues im having (hoping it's not MS) and would like to eliminate as many possibilities I can,and someday soon figure out whats going on and get this figured out it has been 5-6 yrs now with no answers or solutions (other than the surgury)which changed absolutly nothing.
My biggest fear right now is I get the feeling as this continues (not getting better) i'll no longer be able to walk, So if thats my plight so be it. Im in the mind set that I need to know now to eliminate that possibility or exept the fact and prepare myself that my legs will soon be of no use.
So i call my PC Dr his words were you do not have MS because your issues are not progressive (thought to self could walk without issues 5-6 yrs ago but today i cant) but said i should talk to my Neuro doc, so here we are on this fine June day looking for insight,help & advice to get to the bottom of all these issues with myself & Drs.
Any help or advice would be greatly appreciated.

Thank you in advance to all

Posted 6/9/2013 8:39 PM (GMT 0)
Rick, what part of Maine do you live? I was born and raised in Saco. There are several people I know from Maine that have Lyme's disease.

I have read about members being diagnosed with MS when all along they had Lyme disease. If it were me, the first thing I would do is to rule out Lyme's disease and its co-infections. The first 2 pages on this Lyme's site give a lot of info. I would also start another post and state that you are looking for a LLMD (lyme literate doctor who is affiliated with ILADS) in Maine in the subject line. Make sure your e-mail is activated by going to your profile so someone can get back to you.

Take a deep breath and do your research.

Patty
Posted 6/9/2013 10:29 PM (GMT 0)
Thanks Patty I was born and raised in Brunswick on the "out in the sticks side".

Finding an LLMD will probally be easier then getting the referal from my Doctors.
Quite often I have to wait months with my symptoms not getting better before they send me to a specialist which adds to my frustrations.

And by me educating myself on Lyme,MS which is where my internet research leads me.
and seems to insult their inteligence when I ask specific questions or give reasons why I suspect
this or that.
I asked my PCP doc about MS and his exact words were "you dont have MS because your symptoms are NOT progressive"
And just keep Lyme related my ELISA test came back negative. So learning that the ELISA is not very reliable I mentioned that there was a place out in CA that does better testing his exact words were "If you want LD thats the place to get your blood work tested"

Rick
Posted 6/9/2013 10:51 PM (GMT 0)
Hi Rick,
Most docs are afraid of the uncommon - so they poo poo the labs that will show what they don't want to know about. Never mind that it's our lives they do that with!

I would like to encourage you to continue on with your researching! As Patty said, many with MS find out later that they have had Lyme disease all along, but it doesn't stop with MS - there are over 300 misdiagnoses that Lyme disease can get - here is a list that one person has made available:
lymebook.com/blog/testing-diagnosis/misdiagnosed-diagnosis-mimics-great-imitator/

I would also encourage you to read through the "New to Lyme? Start here!" thread as it's packed full of important information, symptom lists (as Lyme rarely occurs by itself), helpful links and pdf's, how to detox when one has these infections, and a list of questions that you can ask any doctor that you are seeking treatment from!

We also have a pretty good search function on this forum to help you narrow down your search for information from past posts. We must be our own health advocates now and the best thing to arm yourself with is knowledge about our infections and the different ways to treat them!

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, you can start a new thread titled something like:"Looking for LLMD in the _______ area." Although you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

You can also email our long time member, Dan's Mother at:[email protected]

You can also email Stephanie at: [email protected] You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html
Posted 6/9/2013 11:32 PM (GMT 0)
Thanks Traveler,
This has been a mind boggeling amount of info over the last few days
only because I had no idea it was this complex.
And my symptoms not getting any better I wish I had not put so much trust in my
Doctors a year and a half ago.

Rick
Posted 6/9/2013 11:38 PM (GMT 0)
I can agree with you on both points!! There is good news though - at least Lyme disease can be healed! And you've come to a place where you can get not only understanding, but help, information, and support. Just keep on learning, as knowledge is power with any disease, but especially with the tick-borne diseases!
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