SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
blood tests and ms
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
Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

blood tests and ms

Hi all, my doctor seems dead set I have ms however my neuro is saying no, 18 months ago woke up with paralysis of right arm and hand, had pins n needles and numbness.This then continued and never really fully went away, then a few months later my right leg went numb with pins n needles and muscle spasms and twitching. This has stayed the same also. 6 months after that I blacked out while driving and when came round i had funny internal shaking and buzzing through my body, I now walk with a walking stick as my right leg feels constantly stiff with muscles cramping and i cant bring my leg forward, I also fall over/stumble regularly with no reason or warning. Now months later again my face has decided to go numb with tingling pins n needles all over, driving me mad. My Neuro thinks i have mental issues and has written me off. But my doctor is adament even though MRI of brain came back normal. I have had blood tests of ESR & CRP which are both elevated, the CRP has doubled in the past year, this shows there is inflammation in my body somewhere, but doesnt tell the doc what, does anyone with MS have these results. I am so sick of not getting anywhere, 18 months and I dont feel I have gotten anywhere a diagnosis
4 Comments
Blank
Avatar_f_tn
sorry also forgot to add in extreme fatigue, i get so physically tired and exhausted doing the smallest of things.
Blank
2012515_tn?1353879125
Hello and Welcome to our little group!

I'm so sorry you are going thru this.Limbo is no fun place to be and MS is not either.:(

We have some wonderful members here and they are caring and encouraging.  They will be along soon to offer advice and encouragement.'
Please know that I will surely lift you in prayer each day.:)

I also would suggest that your doc the one that does strongly suggest MS refer you to another Neuro that would be more helpful and a better listener and that will believe you.

I am also in Limbo for MS ???? but I have also found out I'm allergic to gluten and wheat, so some sx's seem better since I cut that out a couple of months ago. However, I will have my 2nd set of MRI's next week after over a year..Whee!!  Not!
My neuro sent me to a MS specialist and we're on a wait and see if more lesions show up and sx's worsen.But, all in the Lord's timing or it may be that He has different plans.:)

MS is very hard to dx so it can be a long wait.
You have friends here now ,so we will be here if you need us. Also, there is the MS forum and they are all very helpful too!

Many blessings,
Tammy:)
Blank
Avatar_f_tn
Well hello,

I started off here in limbo land for MS, but now I don't suspect that my sxs are cuased by MS. What I can tell you is that as Tammy stated MS is very hard to be dxs with. You might want to get an MRI done of your spine as well. I truly would try to get to see another Nuero as well.

Limbo land isn't an easy place to be but this forum makes it easier. Another suggestion I have for you is try out the MS forum they were there for me when I first came to medhelp. And even now that I doubt MS they still are here for me. They can tell you everything you need to know about MS.

Well, I will be praying for you. God is a true healer of all illness. I believe prayer helps and wanted to let you know you have mine. I am here for you if you need anything. We all need friends who understand what limbo land can feel like. May God be with you,

Kimberly
Blank
Avatar_f_tn
I haven't been on this forum in a while, so I'm sorry I didn't respond sooner.

I just wanted to ask if you are familiar with Lyme Disease?  It has been in Australia for decades, even though the gov't has been insisting there is no Lyme in Oz for almost as long. The number of cases is increasing lately and some patients and their families have formed foundations and are actively petitioning the government for recognition and especially for treatment.

You might contact the Australian Lyme Disease foundation and the Karl McManus foundation for more information. You can also check out Dr. Peter Mayne's website. He was one of the earliest docs to learn about it and start treating it.  Just google "Peter Mayne Lyme".

There is good info about Lyme and other tick borne infections on the ILADS website.

I am an American who got Lyme in Queensland 7 years ago. I also got Bartonella and Babesia, two common coinfections. Dr. Mayne mentioned in a paper he published in Dec. 2011 that all his Lyme patients were neuroborreliosis patients (without arthritis), which is quite different than North American Lyme.  It most often mimics MS, ALS, and other neurological disorders. This is true of me, too. My Lyme mimicked MS to a degree. I showed aout 20 lesions on my MRI, but none of them were enhanced.

Testing at Australian labs usually produces a false negative for Lyme patients in Oz, possibly because the species/strains of the bacteria there are quite different from New England, where the test interpretation was developed. Many have used IGeneX labs in California. I tested positive on my Western Blot there, after I tested false negative at my usual lab.

You are I welcome on the Lyme forum. We have had a couple others from Australia there lately.
Blank
Recent Activity
Avatar_f_tn
Blank
UnsureMS Got baptized on Sunday...Go... Comment
Sep 18
Avatar_n_tn
Blank
wdermage commented on Spongy feeling in fee...
Sep 13
5265383_tn?1380059282
Blank
aspentoo Eyes fine again. Definitel... Comment
Sep 09
MedHelp Health Answers