SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
5 years, 11months and 4 days to DIAGNOSIS
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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5 years, 11months and 4 days to DIAGNOSIS

Well guys today I was told by my private doctor i have MS. WOO HOO, balloons, and bunting, and lots of champagne lol.

She has based the diagnosis of MS on the first MRIs I had and the latest MRI I had 2 years ago and also the results of my VEP test and the deficiency showing up in my bloods which are classic for anyone with MS and my neurological exam testing she did.

Alongside this she also said i have had Lymes and they think the co infection is still active but would not be causing all the neuro problems.

However, she thinks the new lymes test antibodies are reacting to the several viruses i have, EBV, CMV and shingles. She said that we need to addressed these viruses even though the test show they are not necessarily active the titers are still very high and could be causing my MS to flare really badly and also muddy the waters for the Lymes testing.

She is prepared to write to my GP and tell her what she thinks about it all and ask her to put me on anti virals to see if this will help to stableise my MS which is a bit out of control right now.

She wants me to go into their hospital to have detox etc to see if it would help my MS, because of the toxic chemicals they found, but she knows fiances are a restraint. They are sending me a cost estimate she always desperately wants me on nutrients as I am low in some bad things for MS.

She said I have a lot going on really and until i get some of the other things under control my MS is going to be a problem for me.

What do you think guys. So not only MS, but Lymes, Co infection, EBV, CMV, Shingles, Aspergillus (aspergillosis) fumigatus, Toxic Chemicals, low B12, anemic, magnesium and manganese deficient oh and a few more lol.

Happy days.

Maria
Whatever you have always wanted to do...........begin today.
10 Comments
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2012515_tn?1353879125
Maria,
I'm not sure as what to say!
Sad but yet being validated and having answers is a relief and blessing.
You waited far too long

Congrats on finally getting the confirmation of what you already knew(MS):(
I'm so sorry there is all the other stuff to have to deal with, as if MS is not enough and Lymes.

Detox sounds good even though it's a hospital stay. SORRY!

You need to do what you go to do just so you can get on the road to recovery and to finally have some HAPPY DAYS.:)

I will continue to lift you in prayer daily and I trust the Lord will give you the energy and stamina needed to get where you need to be.
You sure have waited a long time but yet you have been patient and very encouraging to all of us.:)  Thankyou!

Now, Take care of yourself and know that we all will be praying for you and wishing the best. Your loved so much!

I'm sending BIG gentle hugs and lots of Love your way.
Tammy:)

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551343_tn?1350880995
Thank you tammy, i am still going to be here though hun. Not going anywhere this is my gentle loving place. xxx
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2012515_tn?1353879125
Maria,
I'm glad that you,(our) Mama Bear is going to cont' to be around!
We wouldn't want it or have it any other way.:)

Love filled hugs and blessings,
Tammy:)
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956292_tn?1334058469
UMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMM

OMG.. I am ....happy you got a dx...but gezzzz what 3 others too...HOW are you doing my love?? I knew you would get an answer..I knew it...

but OMG..Really..So what do we do now..WILL you eventually start a DMD?

OMG Maria..Please take it easy..are you okay? Big hugs to you

Love you Jenny
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551343_tn?1350880995
LOL, i am ok, no different then i was 2 days ago hun. At least now i have some hope.

I am not bothered about the MS diagnosis there is no disease modifying drugs for me now, its too far gone lol. I dont have RRMS its PPMS and probably has been for a while now.

All my doctor can do is support me with all the other things going on, and hopefully if we can calm all them down then the MS will its self calm down again.

At the moment it is running at level 10 and has been for 3 weeks and quite frankly i feel so ill right now I was running out of strength, but at least now she has given me a bit of hope lol.

As I have had it pointed out to me on other forums it could be that it is Lymes only and the doctor has it wrong because Lymes and MS are almost identical, BUT I have to trust her opinion on this, she isnt a young women, but very experienced and the leader in my country on Lymes, so I am assuming she knows what she is talking about and is not just after my money lol.

She is doing everything she can to get the treatment for the viruses on the NHS so it will be free.

So its onwards and upwards.

I have to say my neuro has always maintained i have had TWO diseases and that is why he was always a bit reticent about given me a diagnosis of MS because some of my symptoms never did fit right. So he was right too in a way wasnt he.

How are you anyway Jenny are you getting any relief with your DMD? I hope so hun.xx
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956292_tn?1334058469
Hello my friend,

I am sorry a DMD will not be an option for you but hopefully they can calm your system down enough to give you releif and treat your MS.

I am so glad you have an answer. not MS but an answer..wish you had gotten this 5 years, 11 months and 4 days sooner though.

I am doing good with DMD. My symptoms are minimal..lately have had a bit of a reving up of them..but otherwise ok..

I do not like making adjustments and changing my life for this..I got mad the other day with the heat and wanting to go to the beach but could not take the the heat...I love the heat or should I say used to but my body can not do it anymore...I sat home in the air conditioner room...looking outside and a beautifal day...I was pissed.

enough about that.

I hope you feel better soon!

Love you
Jenny
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1475492_tn?1332887767
Maria,

Hugs --- I think, this is good. I know it ***** but it is good. You can FINALLY get your health to a better place and fight the issues one by one OR preferrably all at once.  

I suspect the first stop would be B12 (it will give you energy and improve your immune system) then the viruses and co-infections. Baby steps thought because your body might go into shock from all this wonderful treatment now. :)

I am so very glad that you are going to be moving forward and getting your health back on track...that is fabulous news... a diagnosis, though, for you my friend doesn't really change anything except improving your health. EBV is so hard on your system...so hard...and once you get that resolved it will improve the shingles and co-infection. You have been so sick for so long, it's time to just take care of you!
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No wonder you have felt so crummy.  You have a lot going on! I am so glad you have hope again! That is so important.  I would expect you'll start to feel better as you detox and start getting things back into balance.  

So did I understand correctly that your doc isn't planning to treat you for Ehrlichia?  Lyme is a 'maybe' for you, but I would have thought she'd treat the Ehrlichia. It can be quite nasty all by itself.

It does seem confusing that you could have MS, which involves an overactive immune system, with multiple high virus loads, which suggests a suppressed immune system. It's almost like yours is suppressed and malfunctioning at the same time. No wonder doctors had trouble figuring you out.  I am so glad you went to see this new doc!  And you can call back the doc who thought you had two diseases and tell him he was wrong.  It's more like 8-10 diseases!!

Keep us posted!
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900662_tn?1380159390
Is it sort of bitter sweet?  you knew in your heart that you had MS for years.

Why is getting a DX so hard for so many..
You still have the be the  MAMA of  Limboland because you helped so many with your post...

Your friend in the USA.. Illinois
JB
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198419_tn?1360245956
Holy Schmoley! They finally diagnosed you! I just popped on here to see how you all were doing, and haven't done so in soo long, and can't believe my eyes! Here's to anti-virals! Sounds like they looking at an interferon for your near future!

Aw Mrs. A :) Truly I'm glad you will finally, finally be treated.
((((Hugs))))))))
shell

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