I'm questioning my DX

[biddi4]

Hi all, I know this is going to be just another person going through what apperas to be the norm, but please read and offer suggestions.

I'll try to be brief:

3/28/11 during a shower I felt as if suddenly my right foot was tingly, and numb-ish. A few minutes later I felt as if that same feeling was traveling across my entire right side. So, ER, Helicoptor ride, another ER, negative CT,MRI, MRA, and negative cervical mri I went back with a dx of parathesia. Was given 6 wks stroke rehap therapy and by July I felt...better.

Still had tingling but I think it was lessening. Then a week after an outdoor performance (I'm a musician) all the familiar symptoms suddenly became more present.

So back to the ER. This fellow asked if I'd ever been checked for MS. I said that I did ask my primary for an MRI a year or two earlier and that a seemingly insignficant lesion was noted. He felt very confident that my returning symptoms were not a stroke and that I should be worked up for MS. So off to my Neuro who had said in May that a few more months and I'd be back to normal. Saw Neuro in mid Sept they got a new MRI still negative did some blood auto immune panel, lyme, seemingly the works. Plus a spinal tap. Two weeks after the spinal tap, I got the results

Here are the abnormal only findings:
CSF IgG Index 1.1
IgG, Syn Rate, CSF 14.1 mg/day
Glucose CSF 74
Total Protein, CSF 50.2
Nine(9) Oligoclonal Bands
No such bands in serum.
Nucleated Cell, CSF 10 cells/uL
Lymphs, CSF 91
Blood was good except for glucose which was 118

So neuro schedules EMG. Just got results spoken to me only yesturday. Carpel tunnel. A slight ulna nerve problem but not measurable. As well as nerve irritation I think they said on the outside of right leg. Which is probably caused by L5-S1 problem.

My problem is they told me so far:
No Stroke
No MS
Possible CIDP untill after EMG
Now it's Fibromyalgia.

I was willing to agree with treatment for that because along with all the tingling and the worsening numbness in my right toes and bottom of that foot, I also have been extremely tired. Kinda foggy and slightly dizzy and some mild nausea. So they gave me 15 day taper of prednisone and 30mg/day Cymbalta. I took the Cymbalta last night and by 3am EVERYTHING was worse! Right leg twitching like never before. I don't think I'm going to take it again. I did start the prednisone this mornig, but I don't fear any problems as I've taken that before.

Anyway, I just feel like the neuro is afraid to say it MIGHT be MS, but to me it acts too much like MS....Thoughts?

[wiggles94]

Well, I have been going through the dx process - and was put on Rebif, but after a year and other opinions, off Rebif, and watching for now.  Am stable .

As far as you - there is relapsing remitting, primary progressive, and secondary progressive MS.  It has been my understanding that the MS meds like copaxone, don't help for the progressive forms of MS.  
My new neuro (who I love) from an MS clinic, told me that I could have MS, but he didn't think it would be the type that the MS meds would help.

I'm sure others will chime in here.  I know this is so frustating - but hang in there!
Carol

[biddi4]

WOW

Back from the neuro.
Possible MS
She's saying chronic progressive

Wants to start me on Copaxon

Soo I'm relieved a little, but nervous about the med.

Thoughts, help???

[kwarendorf]

Yes, although I think that would likely be the case very early on in the disease process.

[biddi4]

Ya, I've sen that page before, after a quick glance though, alot of these diseases mention lesions on mri.
Here's a thought, could lesions be microscopically small? Too small to be seen, yet enough to cause symptoms?

[kwarendorf]

Hi biddi -

At some point lesions need to show up on you brain or c-spine MRI's for it to be MS. They need to appear in two or more areas and the need to be of different ages.

In addition to MS, there are many causes for o-bands to appear in you CSF. Here is a list of other causes.

http://www.neuroweb.us/chapters/csf%20oligoclonal%20bands/text.htm

Kyle

[biddi4]

UPDATE
One year later:
-Saw a fibro specialist in March, put me on gabapenton.
I took it at night only. I slept better, but nothing else improved. Tried to increase the dose (per the doc), felt drunk. Didn't see the benefit, so I stopped.
-Had a spine xray in April just to make sure nothing with impinged (sp), No red flags at least.
-Went to a chiropractor, got some GREAT adjustments, but no improvement in symptoms.
-In May saw a new nuerologist. She thought MS. Ordered new spine MRI, and evoked potentials. Both negative hahahahahh Also orederd a bunch of bloodwork including LYME, Lupus etc.. all neg.
Then she says not MS, but multiple issues. Need a spinal tap and another emg. Both done over the last two weeks
Spinal tap results:
O-bands found in CSF, none in serum
CSF IGG 6.9
CSF Albumin 42.2
CSF IGG/Albumin ratio .16
Serum IGG 761
Serum Albumin 4220
Serum ratio .18
CSF index .89

So from my tap last year the CSF IGG went up, the CSF albumin went up,
igg/albumin ratio went up, serum igg went up, but the csf index went down.
With so much else ruled out, doesn't this have to be MS?

[Lulu54]

Well that answer from the MS doc is certainly a non-answer, isn't it?  There are those unfortunate people who find themselves in Limbo because the doc hasn't quite noodled out the suspected cause of their problems and it appears you are now in that group.

I'm sorry you have been sent away to wait for the next problems to arise.  

[biddi4]

Well, got a second opinion today. But first an update on the Lyrica. It made my "hangy ball" swell up and my legs twitched like crazy over night. Not much sleep, so, like Cymbalta, it's shelfed. I'm not taking something that makes symptoms worse.

Now, back to the second opnion. I saw an MS specialist from the same practice as my regular neuro. He said that I have symptoms that have to come from multiple parts of the brain or central nervous system. But none of them point to one diasease. The O-bands being high doesn't corrolate with other numbers like syn rate, igg, etc. That it's more likely to be an error than actual o-bands. But this guy would not say that I have Fibro, but gave no indication of what I could have. Just that I have symptoms without a cause. In his words "like when some people have high colesterol without any reason, they just treat the high cholesterol" So, I'm just crazy, and all this is make believe. WHATEVER!!
So I guess I'll just keep track of things as they change and wait till my whole leg doesn't work and go back to them and kick 'em with my good foot and see what they say then.

[melo1224]

Misty, I asked my doctor and they said yes, Lyme could cause lesions.. however it seems everyone had a different opinion. It's hard to know what to believe

[heartfelt77]

I have a question does lyme disease really create lesions?   Just a thought.

   Take care
        Misty.........    Just curious.

[melo1224]

hi,
I'm also curious about your Lyme testing. Do you have a copy of those reports? My doctor first told me I was negative but I clearly tested positive on parts of the test and now he's sending me to a specialist for Lyme...
I have brain lesions, tingling, pain and a host of MS type symptoms too...

Just research it please, if it's Lyme you could recover from all of this...that's what I'm hoping for myself!
Good luck, Melissa

[biddi4]

sllowe

I have the report. From 1/28/09. It says:
1. No acute findings
2. As decribed above, there is a small isolated indeterminate non-enhancing signal in the left parasagittal regions, superior aspect of the brain. This is of somewhat doubtful significance by itself. It is mentioned for completeness sake. No other lesions are seen.

[sllowe]

Hmmmmmmm Can you call to get the MRI reports from the facility, or ER dept?

It may very well turn out to be an insignificant lesion - but that cannot be determined by a radiologist.  There is no way a radiologist can deem what is significant, and what is not, without clinical correlation by a physician.

[carrie235]

Biddi,

I also tested negative for lyme...I think through Labcorp.  I had read about Lyme and then googled Igenex Labs in Palo Alto.  They test for lyme, not by looking for antibodies like everyday labs (our bodies stop making them) but they look for dna of the lyme bacteria.  It's kind of expensive, but in my case, worth every penny.

You can google Igenex.  They will send you a test kit.  You have to take the labslip and have signed by your doctor, do a blooddraw and then have the bloodwork overnighted to Igenex.  I paid cash for mine but then submitted my receipts to the insurance company who partially reimbursed me.

Please note that I have no financial interest at all in Igenex...I'm just reporting that route that I took and what has worked for me.  I think a basic lyme panel is like $275 or $400 ....sorry, can't remember.  

Let me know if you have any other questions...

[biddi4]

kwarendorf
I had brain and complete spine 12/10 with contrast, the next two 5/11 and 9/11 brain only with contrast.

carrie234
I was tested for Lyme, negative.
Can I just request a different lab? Would that be more expensive?
I was told they used the western blot method. I hear that's better.

[biddi4]

No, she's not an MS specialist
I do have one lesion but the first radiologist that saw it said it insignificant, and yes, this doctor looked at the films.
Interestingly, I was in the ER being worked up for stroke a year or so after this lesion was found, and that neuro said "yes, you had a stroke based on that lesion" So I said "that's an old one". An hour later, no stroke.
Do you mean did my neuro look at the unique banding?
As for the CIPD, she had told me that was her strongest hunch until the EMG which I guess didn't show spacticity.
No follow up now. She changed cymbalta to lyrica and I'm to call her next week to update. She's setting me up with a rhumetologist probably won't get in for months.
Thanks for your reply

[carrie235]

Hi Biddi,

I used to post on this forum a lot because I had crazy neuro symptoms.  Your post caught my eye.  I suddenly, two years ago after gallbladder surgery came down with neuro stuff....numbness in face, bottom of foot/toes/part of leg, I had tingling/pulsating/vibration etc in body (mostly left side), anxiety, you name it...

Anyhow, seen at UCSF MS center, have million dollar workup, show 20 lesions on brain but nothing else shows MS..  they say this is NOT MS and send me on my way.  The neuro did ask me "have you had lyme disease" when he saw my MRI because my lesions in no way looked like MS lesions.  Anyhow, I tested negative for lyme both on regular labcor test and in my lumbar puncture.  Anyway, so a year later, I'm going crazy and drive myself to Igenex Labs in Palo Alto CA (they are a lab specializing in lyme testing...people from all over the world have their blood sent to them).  I tested positive for lyme and a co-infection of erlichosis.  

I find an LLMD (lyme literate MD) in San Francisco, started treatment in January 2011 and today, while still having some symptoms, feel SO MUCH better!!!  

Anyhow, I just wanted to pop in and say you might want to check in to the Lyme disease possibility.  I didn't believe it at first, but I am so extremely happy that I have an answer and am feeling better.  

Anyhow, I'd be lying if I said that I still don't worry about MS.  I am a worrier (was never worried about health issues before all of this).  I've had two MRI's.  The first revealed the 20 lesions.  I had another six months later....nothing new...I get another one on Dec 12 (which will be 1.5 years out from the first).  If nothing new, then I don't repeat.  Anyhow, just wanted to let you know that you might want to pop over to lyme forum...it might be something that you should look into a little further.

[sllowe]

Hi Biddi!

MS is so hard to dx - I've listened to doctors that describe cases like yours when describing why it's such a hard disease to DX. Question for you - Is this neuro an MS specialist?I'm not knocking regular neuros - I was dx'd by one. But, 2nd opinion may be in order in your future, once this doc has thoroughly investigated the cause.

The two things that stand out to me that if it were me, I would want  clarification on 1) Do you definitely not have any lesions? Has the neuro reviewed them personally? and 2) the unique banding in your CSF 3) if no lesions, then why the CIPD diagnosis

I would venture to say the doc is not afraid to dx MS - but maybe is not completely convinced it is at this point in time. It is important to get the right dx because it will dictate the treatment. So, to me, it's understandable that they take time needed to get it right.

When do you go back to the neuro? You can ask these questions, and hopefully he/she will be willing to explain a bit more to you.

-Shell

[kwarendorf]

"Nine(9) Oligoclonal Bands
No such bands in serum. "

This certainly is suspicious. Were your MRI's of both brain and c-spine, with and without contrast?