Undiagnosed for 2 years now

This all started for me in September 08. I had been a very active, sports playing person up until this point. My energy level had started to decline while I was in college and playing soccer in 2000. But in Sept. 2008 I began to have lots of fatigue and brain fog.  Since then I have gone through a bunch of testing. My initial MRI in 2008 came back with multiple spots on my brain but they chalked it up to meningitis I had when I was 3 years old. However these did not show up on my MRI from 1997. They tested my thyroid and all test came back normal. I have been suffering from a bunch of different symptoms since 08. I had a little bit of a break from them in 09 for a couple of months.  They seems to be getting worse though. Recently, my neck and back have become stiff and I have tingling/numbness that comes and goes in my middle lower back. I feel like I am on a boat all the time,  and feel tremors.  If I bend down to pick something up, I feel like I won't be able to get back up. My muscles and joints are aching and feel weak and I'm exhausted after doing simple tasks.  I feel like my brain is in a fog and I am clumsy, which is not how I used to be as a pretty good athlete. Sometimes I will want to do something as simple as move the mouse on my computer and I will be telling my hand to move the mouse and it doesn't do it. I wake up some nights with my heart racing, sweating and feeling very dizzy. And I can go on and on with symptoms!

So here is what I do know.
My test results have shown low vitamin D, my SED rate has been high, my potassium level has been low, I have some kind of spotting on my MRI, and I finally got a lumbar puncture testing for MS and Lyme that came back with MS panel being abnormal just last week. But I don't go to see the Nuerologist until the 19th. Can anyone help me interpet my test results because my regular GP can't?

I feel fortunate to have a GP who has not given up on my over the last two years and is still trying to help figure this out. Before this started in 2008, I was a healthy, active 32 year old woman.

Thanks in advance and please ask me any additional questions.

[Sparkysarah]

I am not the right person to try and interpret your results, but I can say hello and you are very welcome on the forum. I am assuming that when you mentioned the 19th you mean of November which feels like a long time to wait and it is very tough being in this position.
I hope that some ofther members will chip in and give you their opinions on your results and all I can say is that this is a good place to find out about MS, make friends and learn from others. The forum is just full of some really special people so welcome.

Best wishes

Sarah

[californiaturtle]

Hi Sarah,
Thank you for welcoming me. It's nice to find a place where I can ask questions and get support from others.

Best,
Beth

[figuerpa]

Hi and welcome to the forum,

I cant really tell you what the results mean either. Do you have copies of your reports to share what exactly the abnormalities were in the LP? Like the Obands and the IgG index. That may help with figuring out something.

I hope you get to the bottom of it soon and get some relief, you definatley came to the right place for support. This forum is full of people willing to listen and offer their advice.

Good Luck,
Paula

[Quixotic1]

Hi, and another welcome to the forum.

No one can really give any diagnosis online, but there are some flags that make me think this may not be MS.

These are the joint aching and the high sed rate.  How high was it?  You should have a thorough work up by a rheumatologist.  There are several autoimmune diseases that cause multiple brain lesions.

I'm not saying you do not have neuro-type symptoms, because you clearly do.

Do you have a copy of your LP results?  If not, get it and let us know what was abnormal.  It  might give a better idea of what you are dealing with.

Oh, and the quick dismissal of the lesions as due to the childhood meningitis is silly.  You noted that an earlier MRI did not have them.  If the lesions were du to a childhood infection the lesions would be present on every MRI since them.  They would certainly not appear decades later.

MS can have odd presentations.

Since you could go on and on about symptoms, why don't you tell us about some of the other symptoms?  There is no such thing as TMI, lol.

Quix

[californiaturtle]

Hello,
So here is what my results look like for the LP.

Component           Your Value   Standard Range
IGG, CSF                        2.1          0.4-5.2 mg/dL
IGG                                1070     600-1600 mg/dL
ALBUMIN, CSF                 14.7         13.4-23.7 mg/dL
ALBUMIN                         4500   3300-4700 mg/dL
IGG SYNTHESIS RATE 0.1           0.0-8.9 mg/Day

OLIGOCLONAL BANDS INTERPRETATION, CSF, ELECTROPHORESIS ABNORMAL
OLIGOCLONAL BANDS INTERPRETATION, SER/PLAS SEE NOTE

So I have an MRI from 1997 because I was having "rapid eye movements" that they said were focal seizures. I haven't had any since then though and they lasted for about a week.  The same thing happened to me when I was 5 years old for an entire week and my mom didn't know what was happening so she just left me on the couch for the week thinking I had a fever. And the begin, I have had ear infections since birth and ended up getting meningitis when I was 3.

Anyways, there is no indication of the matter in 97 but it does say:
1) Small 2-3 mm area of high signal identified within the right sylvian fissure. This is extraparenchymal in location. This lesion has a benign appearance. One possibility is a small arachnoid cyst.

Then the 2008 MRI indicates several spots of gray matter. My doctor said that if I was a 70 year old woman she wouldn't be so concerned but I'm not!

Here is a list of symptoms:
Tremors or internal vibrating
headache
Stiffness
Vertigo - boat rocking
weakness in muscles
pain in back
aching in muscles and joints
numbness in back
night sweats
facial flushing
clumsy
fatigued
off balance
confusion- brain fog
ringing in ears
rapid heart rate
anxiety
bruise easily
still tired after a full nights sleep
sleepiness during the day
feeling uncoordinated - or like I can't control my limbs when I want to
moody

I think that is most of them.

Thanks for all your support, it really is nice to find somewhere to talk to people about all of this.

Best,
Beth

[californiaturtle]

Also:
metallic taste in mouth
occasional smell like somethings burning
burning in my arm pits
swollen lymphnodes in neck and chest/armpits

[michelleislay]

hi beth and welcome!!

wow, such a puzzle the human body can be??!!  

i am absolutely no expert, but what caught my eye in your initial description was that when you bend over you feel like you can't get up again.  what does your doc. think of this symptom?  

i hope you find some answers soon and also that you begin to feel better!

keep us posted,

xo michelle

[COBOB]

Tachycardia, bruise easily, night sweats, swollen lymph nodes & joint pain with CNS anti body synthesis don't seem to fit with MS.   There are other things beside MS that can cause OCBs in CSF. Lymes (Lyme borreliosis,)  babesiosis, human granulocytic anaplasmosis, CMV, chronic EBV, Shingles, Systemic Lupus, etc.

High ESR signals a diffuse inflammatory process.  Swollen lymph nodes signals immune response and activation by the body.  I think that a rheumatologist and/or infectious disease specialist might need to be involved.  I would think that an ANA, anti-DNA , CRP, serum immunoelectrophoresis and other tests might be in order.  Assuming your peripheral blood smears are normal, an aspirate and cytology of a lymph node might provide a clue.  

While I understand that you have neurologic symptoms, the question is one of cause (originating in the CNS) or effect (origination outside the CNS, but cause a secondary reaction in the CNS.)

Quix may have more to add, but there are a group of symptoms here that seem out of place.  If you came in with a complaint of "Tachycardia, bruise easily, night sweats, swollen lymph nodes & joint pain" I'd approach the work up in a totally different way.
I'd be looking at a very complete hematology workup and I'd be looking for a cause for the swollen lymph nodes.

In terms of cause and effect, I can think of some disease process that can cause "Tachycardia, bruise easily, night sweats, swollen lymph nodes & joint pain" that could have neurologic efffects, but I can not think of a neurologic condition that can cause "Tachycardia, bruise easily, night sweats, swollen lymph nodes & joint pain" together.

Bob  

[Quixotic1]

Well, that LP result is quite incomplete.  those first six values are fairly meaningless.  They are used to calculate something that is called the IgG Index, but I didn't see that listed.  Can you find it?

Also the O-Band plasmaphoresis mentioned reading the annotation.  What did that note say?

I have to agree that the night sweats, lymph node swelling, elevated sed rate all point definitely away from MS.

The nighttime episodes of tachycardia, sweating "could" be panic attacks or they could indicate an infection or even a problem with the autonomic nervous system.

I agree that you should seek an evaluation with an Infectious Disease specialist

The most recent MRI mentions something about lesions in the gray matter.  Grey matter lesions do occur in MS, but also in other disorders.

I have to agree that before I considered MS, I would request evaluations by a rheumatologist and an infectious disease specialist.

Can you tell us what the values for the sed rate and for the IgG Index are?  Also what was the note regarding the abnormal testing for O-Bands?

Quix

[californiaturtle]

Hi Quix,
Thank you for all your information.
That is all the information I got from the results but I'm waiting for the paper report in the mail. I will let you know if it says more. I also didn't get to see the "note" because it wasn't available on my online view of the results.

I have seen an endocrinologist, infectious disease doctor and neurologist previously and they have done many blood work ups. Besides a few things being high or low nothing they have seen has sent them in any direction.  Frustrating!

They did test for Lyme as well with this LP but I haven't gotten any results back for that.

My doctor has not given up figuring this out but it has been super frustrating going through all of this.  She first thought I had a thyroid issue, Hashimoto, but I too feel like there is much more going on here than that.