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stlfingerpaints 12-23-2014 03:57 PM

Lumbar Puncture Results ... a little confused
 
Hi,
I'm sorry this is so long! I've been being tested for MS for the past 6 months or so. My neurologist (an MS specialist) suspected MS when I went in for back pain and weird sensations and extreme debilitating eye pain in one eye, fingers twitching and numbness, muscles in arm and leg twitching, face on one side had lessened sensation, pain in my rib cage, malaise, electric shock in back of head at neck, and toes numb. In the past six months I've had episodes of drop foot, ataxic walk, cognitive impairment, electric shock/stabbing that starts in eyebrow and goes to the side of my cheek by my nose, lips going numb and bottom lip will start contracting, weakness in arms, burning on the top of my foot, and extreme pain on the bottoms of my feet, vibration in my abdomen and legs, eye twitching, and some visual disturbances... (the list could go on and on lol). Most things for the moment are at bay, but right now the most annoying thing as we speak I keep getting an electrical shock in my hand and my fingers are not cooperating as well as on the side of my nose (has been happening for 4 days)

I've had 2 rounds of MRI's w/wo contrast on my brain, neck, thoracic, and lumbar...only some patchy signal alteration within the cervical cord, non-specific signal alteration adjacent to the occipital horn of the right ventricle, and mild prominence of lymphatic tissues in the wildeyers ring, and a cyst on maxillary sinus. EMG/NCS study was normal except showed carpal tunnel in both wrists.

Dr. says it isn't MS but wanted to do further testing of my CSF because of the high nucleated cells. So he tested the ACE levels. The nurse recently called and said that everything is looking normal. But from my research an elevated CSF ACE level of 7 isn't normal, and could point to sarcoidosis. I had never actually heard of sarcoidosis or neurosarcoidosis until a couple of days ago when researching some of my LP results. Neurosarcoidosis is a mimic of MS and the other way around. My question is, how are these numbers normal? I haven't been able to talk to the Dr. yet, so I am wondering if anyone could give their advice on my results. Definitely not MS?? Neurosarcoidosis?? Thanks SO SO much!


CSF / Serum multiple sclerosis panel
Final
See *1
Results Expected Units
Oligoclonal bands, CSF 0 0 bands
Oligoclonal bands, serum 0 0 bands
Interpretation 0 See *2<4 bands
CSF IgG index 0.50 <=0.85 index
IgG, CSF 2.6 <=8.1 mg/dl
Albumin, CSF 28.1 [B]High[/B] <=27.0 mg/dl
Albumin/globulin ratio 0.09 <=0.21 ratio
Synthesis rate, CSF 0.50 <=12 mg/24 hr
IgG, serum 748 [B]Low[/B] 767-1590 mg/dl
Albumin, serum 090 3200-4800 mg/dl
IgG/albumin ratio 0.18 <=0.40 ratio

CSF cell count
Final
Result Expected Units
Color Colorless
Appearance Hazy
RBCs 787 [B]High[/B] 0 - 0 cells/mcl
Nucleated cells 18 [B]High[/B] 0 - 5 cells/mcl

CSF cell morphologic exam
Final
Result Expected Units
Neutrophils 25 [B]High[/B] 0 - 7 %
Lymphocytes 67 28 - 96 %
Monocytes 8 [B]Low[/B] 16 - 56 %


CSF protein
Final
Result Expected Units
Protein 43 12 - 60 mg/dl


CSF glucose
Final
Result Expected Units
Glucose 65 40 - 70 mg/dl


CSF angiotensin-converting enzyme (ACE)
Final
See *1
Result Expected Units
Angiotensin-converting enzyme 7 See *2 Units/L

MSJayhawk 12-23-2014 04:21 PM

Re: Lumbar Puncture Results...a little confused
 
stlfingerpaints,

:wave:
If your MS Specialist does not believe you have MS, has this conclusion been reached by the Revised McDonald Criteria?

The LP will not find for or against MS. For MSers having an LP, 85% have elevated o-bands. I fall into the 15% with normal CSF. As to what other levels are looked at regarding a possible problem, you would or should ask your doctor. Your MS Specialist should refer you to another doctor if your tests present with findings other than MS.

I would certainly ask the doctor "What's next." It could very well be an MS mimicry, but this should or could be indicated by the results of testing. The neuro has to eliminate all MS mimicries (400+) and then, if all are eliminated, you would be diagnosed with MS if you meet the Revised McDonald Criteria.

:angel:

stlfingerpaints 12-23-2014 04:36 PM

Re: Lumbar Puncture Results...a little confused
 
Thanks for the reply. I will definitely be asking what's next. They are supposed to call Friday since they were waiting for the Lyme test to come back before they called again. That test came back today "Negative".

He says it's not MS based on the MRI's and negative O bands. I would love to eventually have an MRI on the stronger machines. He says I'm a mystery case. I have abnormal neurological exams but no findings on the MRI

MSJayhawk 12-23-2014 04:50 PM

Re: Lumbar Puncture Results...a little confused
 
stlfingerpaints,

If your doctor considers your LP (o-bands) as part of the diagnosis, I would encourage you to find another doctor for a second opinion. The MRI would factor into the diagnosis if you did not have lesions because the Revised McDonald Criteria has at least 2 lesions consistent with MS as part of the checklist. The Revised McDonald Criteria DOES NOT require an LP. 5% of MSers may initially present with MS like symptoms, but no lesions.

Is your doctor only an MS Specialist? If what you shared is fact (MRI and LP), then something is quite odd. I would question his credentials or experience. The LP should not be used as a confirmation test, only as a test to indicate problems or a known mimicry. :angel:

stlfingerpaints 12-23-2014 07:07 PM

Re: Lumbar Puncture Results ... a little confused
 
He finds it odd that with the symptoms and (at my last exam) deficits and weekends that nothing shows up on the mri. That is why he had me do the LP. He said since the proteins they would look for in MS did not show up, that he's sure its not MS. He hasn't been able to explain what is wrong though. I'm not at my worst at the moment, that's for sure. But I've been at this point before thinking "there really must not be something wrong...and then my body tells me a much different story. I started seeing him in the summer when things were at its worst. I also think the heat was a factor (St. Louis is a hot one!). I'm not trying to make myself have "something wrong". But if there is, and I can do something about it, I don't want to miss it. Maybe I'll start looking for a second opinion. His office mainly sees MS patients I think.

stlfingerpaints 12-23-2014 07:17 PM

Re: Lumbar Puncture Results ... a little confused
 
P.S. When he was talking to me about the results of the elevated RBCs and WBC, he said in his heart of hearts he thinks that everything is fine. So when I asked him if I should just consider myself ok, he said "Well I can't say with 100% certainty because the numbers show that there is [I]SOME[/I] sort of spinal cord inflammation going on." So that's when he ran the ACE test. Now with an elevation of it, I just don't see how he could have the nurse say everything looks normal. I did read that some people with MS have an elevated ace level, but also have the Elevated proteins

MSJayhawk 12-23-2014 07:54 PM

Re: Lumbar Puncture Results ... a little confused
 
stlfingerpaints,

The elevated o-bands are the "protein" BUT you can have MS without o-bands elevated. This is why this doctor is not following protocols. The Revised McDonald Criteria does not deal with LPs. Only 85% of MSers may show elevated o-bands. 15% do not. I am one of the 15%. Please look at a second opinion if this doctor is dragging his feet. His reliance on the LP is not correct and there is no link with the elevated protein (o-bands) and MS. 15% is a statistical significant percentage which is one of the reasons it is not a specific test for MS.

:angel:

stlfingerpaints 12-23-2014 09:14 PM

Re: Lumbar Puncture Results ... a little confused
 
Thanks again so much for your knowledge! I am going to get a second opinion. I'm glad I posted this question. My family thinks that I should just go on what the Dr. says, but something just doesn't look right. It is one thing if the dr. has an opinion about why you might have a symptom, and it another when test results show there is something going on and he says everything looks normal.

I've ready many places that lesions can take a long time to show up an MRI (or be missed) or that if they may show on a stronger machine. How can you know when to accept no dx. if they have excluded everything else? Not necessarily an MS dx, but any at all.

Have a blessed Holiday!!

MSJayhawk 12-23-2014 09:38 PM

Re: Lumbar Puncture Results ... a little confused
 
stlfingerpaints,

I was one of the first MSers to use an MRI. KUMC had just opened their new MRI wing and they had a slot open for each department. My MS Specialist had already diagnosed me but asked me to volunteer. The machines then were nothing like we have nowadays. Still, lesions were noted.

While higher resolution machines help, the experience of the doctor are important if not more important. Studies have also shown that the slice thickness can also affect the discovery of lesions. The optimal slice thickness is 3 mm.

I would encourage you to print a copy of the Revised McDonald Criteria and see if he has applied the criteria standards.

Other diseases which can mimic multiple sclerosis, including vascular disease, spinal cord compression, vitamin D or B12 deficiency, central nervous system infection (e.g., Lyme disease, syphilis), and other inflammatory conditions (e.g., sarcoidosis, systemic lupus erythematosus, Sjögren’s syndrome). There are over 400 mimicries and your doctor should determine an answer which has objective evidence (supporting evidence or criteria). You can also go online with some major medical sites such as John Hopkins, Cleveland Clinic, Mayo Clinic or MS organization or Associations of MS Specialists. :angel:

stlfingerpaints 12-24-2014 12:59 AM

Re: Lumbar Puncture Results ... a little confused
 
Your info is very helpful. Thanks for taking the time :). I've read the McDonald Criteria more than a few times and have also researched other conditions. My MRIs were all 3 mm so I feel confident that they would be accurate. I'm not convinced that MS would end up as my dx, nor will I rule it out. It doesn't consume me like it once did. I love researching and educating myself but I never diagnose myself. I think that neurosarcoidosis is definitely worth asking about, but that scares me far more than multiple sclerosis! A high level of CSF ACE can point to that as well as cause a lot of my symptoms, but I just don't know enough about it.

MSNik 12-24-2014 03:43 AM

Re: Lumbar Puncture Results ... a little confused
 
Hi there. Sorry you are going through all this! You started posting stating that you are seeing an MS Specialist. Im really wondering about that. An MS Specialist wouldnt be ruling his decision on proteins in the Spinal Tap....

I too, am one of the 15% who has normal LPs. Ive had 3 of them! However, I have similar classic symptoms and also show over 100 lesions on my brain. For the record, all of my MRIs have been with 1.5 machines- the oldest version and there is no problem seeing my lesions, measuring them or counting them. The strength of the machine really doesnt show more or less- the newer machines are more quiet and for certain types of things they can look for, can be more accurate, but with MS, any strength machine is going to show the same thing.

Please seek a second opinion. At this point, you have had enough tests that you should have a "book" of test results. Take your films (or CDs) and all your readings, all your blood work and assorted other test results with you and try to get someone else's opinion on what you have already have done. There is someone out there who isnt going to write you off based on what your doctor has. The revised McDonald criteria is what all MS specialists use to determine MS....and a MS specialist has seen every symptom out there. No two MS cases present exactly alike- a regular Neuro may be looking for classic signs- where an MS specialist isnt going to let anything go without investigating further.
Happy Holidays.
MSNik

MSJayhawk 12-24-2014 09:23 AM

Re: Lumbar Puncture Results ... a little confused
 
stlfingerpaints,

As sarcoidosis is a mimicry of MS, you may well be on the right track. Whatever your final answer is, make sure the doctor can provide you with definitive proof.

You should note that there is the McDonald Criteria, but it was revised and is now the Revised McDonald Criteria. :) It is also in its second revision and as the doctors learn more, they will continue to revise it.

I am glad you have some confidence in your pursuit of answers. That is part of winning the battle. Also, hold your doctor's accountable and do not be afraid to speak with them about the latest studies or criteria, etc. I enjoy such discussions with my doctor.

Once you know what you have, for me, after my very short pity party, I reset my "normal" definition and got back into the journey of life. I hope that you can exit limbo land very soon! :angel:

stlfingerpaints 12-24-2014 10:13 AM

Re: Lumbar Puncture Results ... a little confused
 
Thanks you both so much. I know it can be such a long road for so many and it can be so tempting to just give up on looking for answers. You both have made me feel better about continuing to find answers and I will :-). Happy holidays to both of you!


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