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lumbar puncture results help

Hi Everyone!
I'm new here and hoping to get some insight. I'm 52, and have epilepsy (being treated by a neurologist). Back in February, I experienced a weird tingling in my legs that turned into numbness that moved up my body to my torso. Eventually, my entire mid-section felt like someone was squeezing me or I was wearing a really tight girdle and it lasted 3 months! My GP ordered an X-ray (I work from home and sit a lot, plus I'm a bit overweight so we both figured it may just be the usual back issues). Meanwhile, I also visited a chiropractor and took daily hot baths (nothing relieved the numbness or squeezing).
The x-ray showed nothing, so my GP ordered an MRI of my lumbar spine, but also decided to go higher up just in case and ordered an MRI of my thoracic spine. The thoracic spine MRI showed lesions consistent with demyelenation.
Ironically, my neuro, besides being a highly rated doctor in my state is also an MS specialist. He told me my squeezing sensation was a classic "MS Hug" and based on the initial tests, he was fairly certain it was MS. He ordered blood work for MS mimics and on our follow up, he said those were negative. My brain MRI showed white matter foci, and he reviewed an older MRI that also showed white matter foci and so he told me he was pretty confident I have MS. He ordered a lumbar puncture which I had done yesterday. Results were posted for me, but I don't see my neuro until June so I'm hoping someone can explain what mononuclear cells are (my csf analysis shows 81) and rbc shows as 18 and it also shows PMNs as 1. The other tests show normal range (protein, etc.) but the others don't show normal range so I don't know whether 81 is high, etc. I've tried searching on these, and am not finding anything informative. The results also show my neuro's pre-op (LP) diagnosis as MS and the post-op says "same" (so does that mean LP confirms MS?) Any insight would be appreciated!!
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Avatar universal
So, I just had an interesting development. As part of getting me ready to take Kesimpta, my doctor ordered blood work that included testing for Hepatitis B and an ANA screen. The hep test came back negative, but the ANA test came back as positive with a 1:160 Titer and speckled. I'm trying to research that result and I'm not sure, does it mean I'm more likely to have lupus than MS? Is anyone familiar with this test?
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I know a little but not enough to tell you what else has caused these additional type of results, one thing i can tell you though is that it won't in any way rule out a neurological condition like MS because you still have the dianostic evidence of brain and spinal cord lesions, so this is on top of...

"What does a positive ANA with speckled pattern mean?
Speckled: Fine and coarse speckles of ANA staining are seen throughout the nucleus. This pattern is more commonly associated with antibodies to extractable nuclear antigens. This pattern can be associated with Systemic Lupus Erythematosus, Sjögren's syndrome, Systemic Sclerosis, Polymyositis, and Rheumatoid Arthritis."

Anti-Nuclear Antibody (ANA) - RheumInfo - Accurate arthtritis ...https://rheuminfo.com › common-tests

Lupus + MS is a possibility but lupus is less likely than Arthritis (RA) which is probably the most common cause of a positive ANA.

Hope that helps........JJ
Avatar universal
So, I had my follow up with my neurologist today. He said my spinal tap was normal, but he added that doesn't necessarily rule out MS (which I'd read here as well). What he told me specifically is that many doctors see symptoms of MS through the prism of other disorders, and that many patients spend years bouncing from doctor to doctor before finally being diagnosed.

That said, based on the MS hug I experienced, the white matter in my brain MRI and the lesions on my thoracic spine, he is confident in diagnosing MS. He was a bit surprised that it "skipped" my cervical spine, but that wasn't enough for him to rule out MS (especially since he did all the blood work and other tests for MS mimics).

I am actually VERY relieved, if that makes sense. The three months I dealt with the numbness and "squeezing" were horrible. Plus, a lot of doctors (in the past) wanted to see some of my issues through the lens of being overweight or older. As I was telling my neurologist today, I even went on B12 shots to try and combat the fatigue to no avail! Not to mention eliminating caffeine, processed foods, sugar, basically all junk from my diet AND quitting smoking. You'd think (if it were merely diet, etc.) I'd be feeling on cloud 9 with such a clean diet and nearly 30 lbs. lost, but I was still feeling (most days) like I wanted to just lie on the couch and take a nap! So, to have my neurologist not only understand me, but to want to help me is a great feeling.

For now, he is taking a measured approach. I'm already on an anti-convulsant for my epilepy (Vimpat), and he prescribe Lyrica at our last visit for nerve pain. He kept those at the same level and said we would revisit at our next meeting if we need to increase the dosage. He also prescribed Kesimpta to, as he put it, help slow the MS progession. With those meds and future tests, he said we would gauge progression going forward. I haven't researched Kesimpta yet, although, I do know there are hoops to jump through to get it both with insurance and the company!

Thanks again for all the great advice and insight. This is all new to me, so I am definitely going to read up on these posts!!
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Unfortunately i wasn't surprised that you were diagnosed, definitely a lot to get your head around but there is a lot of great information and support online, as well as support in your local area from your closest MS society, who i highly recommend you get in contact with.

"ABOUT THIS MEDICATION
Brand Name: Kesimpta® (kes·imp·ta)
Chemical Name: Ofatumumab (oh-fah-TOO-moo-mab)
Usage in MS: Disease-Modifying Agent
Generic Available: No
This medication is taken by injection.

Description
Kesimpta® is a monoclonal antibody that binds to a docking site (CD20) on some immune B cells and depletes them. B cells are among immune cells that have been implicated in causing nervous system damage in MS. Kesimpta is approved by the FDA for the treatment of relapsing forms of multiple sclerosis, to include clinically isolated syndrome, relapsing-remitting disease (RRMS) and active secondary progressive disease, in adults.

Read the Society's news bulletin on the FDA approval of ofatumumab here.

Click here to see the prescribing information for healthcare professionals.

Click here to see the medication guide for patients.

Support
https://www.kesimpta.com/
1-855-KESIMPTA (1-855-537-4678)

Financial Assistance Program
Alongside™ KESIMPTA®
1-855-537-4678
www.kesimpta.com/patient-support/financial-resources"
https://www.nationalmssociety.org/Treating-MS/Medications/Kesimpta

FDA Approves Kesimpta® (ofatumumab), Similar to Ocrevus®, for Relapsing MS
August 21, 2020


SUMMARY
The U.S. Food and Drug Administration has approved Kesimpta® (ofatumumab, Novartis) as an injectable disease-modifying therapy for adults with relapsing forms of MS, including clinically isolated syndrome (an initial neurological episode), relapsing-remitting MS, and active secondary progressive MS. People with active secondary progressive MS have had progression of disability but still experience acute relapses or new MRI activity.
The approval was based on two identical phase 3 studies (ACLEPIOS I and II) in which participants were randomly assigned to receive Kesimpta (self-injected once a month), or daily oral Aubagio® (teriflunomide, Sanofi Genzyme) for up to 30 months. The primary outcome measured was the annual rate of relapses. Secondary endpoints included time to progression of disability, rate of brain volume loss and other measures.
Kesimpta reduced annual relapses significantly more than Aubagio, reduced disability worsening at three months, and reduced disease activity on MRI scans.
Kesimpta is a therapy that depletes specific immune B cells. It is a monoclonal antibody that binds to a docking site (CD20) on some immune B cells and depletes them. B cells are among immune cells that have been implicated in causing nervous system damage in MS. Another B-cell therapy currently approved to treat MS is Ocrevus® (Genentech).
The most common potential side effects include upper respiratory tract infection, headache, injection-related reactions, and local injection site reactions.
Prescribing information cautions that Kesimpta should not be administered in individuals with active infection, and live or live-attenuated vaccines are not recommended during treatment and after discontinuing treatment until B cells return. Because Kesimpta reduces B cells that make immunoglobulins to help fight infections, levels should be monitored before, during, and after treatment. Because of the risk for fetal harm, women are cautioned to use birth control during and for 6 months after stopping Kesimpta.
“We are pleased that there is a new treatment option for people with relapsing MS,” said Kathy Costello, MS, ANP-BC, MSCN, Associate Vice President of Healthcare Access at the National MS Society.

Download prescribing information (.pdf).
Download the Medication Guide for patients (.pdf)

to be continued...


https://www.nationalmssociety.org/About-the-Society/News/FDA-Approves-Kesimpta%C2%AE-(ofatumumab),-Similar-to-Oc

"FURTHER DETAILS
About Kesimpta: Multiple sclerosis involves immune system attacks that cause inflammation and damage in the brain and spinal cord tissues. In the same class as ocrelizumab (Ocrevus®, Genentech), Kesimpta is a therapy that depletes specific immune B cells. B cells are among immune cells that have been implicated in causing nervous system damage in MS. Kesimpta is a monoclonal antibody that binds to a docking site (CD20) on immune B cells (lymphocytes) and depletes them..........


...Novartis has announced that Kesimpta should be available for prescription by September 2020.

Taking a disease-modifying therapy is currently the best way to reduce MS disease activity and future deterioration. Selecting an MS therapy should be done by people with MS in collaboration with their MS healthcare provider, taking into account a variety of factors, including the effectiveness of any therapy they are currently using, and weighing potential risks and benefits, costs and lifestyle factors.

For more information about the availability of Kesimpta and support programs from the company, individuals may call:
1-855-KESIMPTA (1-855-537-4678), 8:30 am–8:00 pm ET, Mon–Fri.
Or visit www.kesimpta.com.

Download prescribing information (.pdf).
Download the Medication Guide for patients (.pdf)
Read more about disease-modifying therapies and other treatments for MS and MS symptoms

Aubagio is a registered trademark of Sanofi Genzyme
Kesimpta is a registered trademark of Novartis
Ocrevus is a registered trademark of Genentech, a member of the Roche Group
FAQ About FDA’s Approval of Ofatumumab – Brand name Kesimpta® – for Relapsing MS
Q. What types of MS is Kesimpta approved to treat?
A. The FDA has approved Kesimpta for the treatment of relapsing forms of MS, including clinically isolated syndrome (an initial neurological episode), relapsing-remitting MS, and active secondary progressive MS. People with active secondary progressive MS have had progression of disability but still experience acute relapses or new MRI activity.

Q. How is Kesimpta taken?
A. Kesimpta is self-administered as a monthly under-the-skin injection. The first three doses are self-injected weekly, then switching to once monthly starting with week 4.

Q. What are the potential side effects of Kesimpta?
A. The most common side effects include upper respiratory tract infection, headache, injection-related reactions, and local injection site reactions. The Prescribing Information (.pdf) provides full information on potential side effects.

Q. Why should a person with MS consider taking a disease-modifying therapy?
A. Taking a disease-modifying therapy is currently the best way to reduce MS disease activity and future disability. Studies comparing people in clinical trials who started therapy earlier than those on inactive placebo suggest that early treatment offered important benefits against the accumulation of disability, which were generally not experienced to the same degree by those who started treatment later.

Q. Should I switch from my current therapy to Kesimpta?
A. The decision about whether to take Kesimpta should be made in collaboration with your MS healthcare provider, taking into account a variety of factors including the effectiveness of any therapy you are currently using, the potential risks and benefits, as well as costs and lifestyle factors. Important questions to be considered and discussed with your doctor in terms of Kesimpta include:
How am I doing on my current therapy?
What is my tolerance for the risk of known side effects?
What is my tolerance for the risk of adverse consequences that might emerge with longer-term use?
Does the administration schedule fit into my lifestyle?
Will I remember to take it as prescribed?
How will my medication choice affect my ability or plans to become pregnant?
What are the comparative costs of my current therapy versus Kesimpta?

Q. How long would a person take Kesimpta?
A. There is no specified time limit for taking Kesimpta.

Q. Are there any risk factors or medical conditions that would make it inappropriate for an individual to take Kesimpta?
A. Kesimpta should not be administered in individuals with an active infection until that infection is resolved. In people with a history of hepatitis B virus infection, the virus may become reactivated, which can cause serious liver problems. Because of the risk for fetal harm, women are cautioned to use birth control during and for 6 months after stopping Kesimpta.  

Q. May I start Kesimpta during the COVID-19 pandemic?
A. Before starting on any new disease-modifying therapy, people with MS should discuss with their healthcare professional which therapy is the best choice for their individual disease course and disease activity in light of COVID-19 risk in their region. Therapies that target CD20 – including Kesimpta (ofatumumab), Ocrevus (ocrelizumab), and Rituxan (rituximab)– may be linked to an increased chance of being admitted to hospital or requiring intensive care treatment due to COVID-19. This preliminary finding requires further investigation.

Q. Will a person taking Kesimpta have to get any special medical tests or monitoring?
A. Individuals prescribed Kesimpta are required to have blood tests to be screened for the presence of Hepatitis B virus (HBV), and to be screened for serum levels of immunoglobulins before, during and after discontinuing treatment until B cells return.

Q. What will Kesimpta cost?
A. The wholesale acquisition price of Kesimpta has been announced as $83,000 per year. The actual cost to an individual who has MS will depend on the provisions of their insurance coverage and the degree to which that individual will be eligible for programs designed to assist with out-of-pocket costs.

Q. Will my health insurance cover Kesimpta?
A. Coverage will depend on individual insurance plans.

Q. Is there a generic form of Kesimpta?
A. No.

Q. Where can I get information about the patient support that Novartis plans to provide?
A. For more information about the availability of Kesimpta and support programs from the company, individuals may call:
1-855-KESIMPTA (1-855-537-4678), 8:30 am–8:00 pm ET, Mon–Fri.
Or visit www.kesimpta.com.

Q. Is Kesimpta being tested in primary progressive MS or non-active secondary-progressive MS?
A. Not at this time.
About Multiple Sclerosis
Multiple sclerosis is an unpredictable disease of the central nervous system. Currently there is no cure. Symptoms vary from person to person and may include disabling fatigue, mobility challenges, cognitive changes, and vision issues. An estimated 1 million people live with MS in the United States. Early diagnosis and treatment are critical to minimize disability. Significant progress is being made to achieve a world free of MS."
https://www.nationalmssociety.org/About-the-Society/News/FDA-Approves-Kesimpta%C2%AE-(ofatumumab),-Similar-to-Oc

Probably not the information you want but it will give you ideas and give you a great resource to pick through too...JJ
987762 tn?1331027953
COMMUNITY LEADER
Your welcome, not sure if saying good luck is the right thing or not when it comes to dealing with a potential dx  of MS, i think in your situation the dx might help you get the treatment you really need to get on top of the symptoms youve already been dealing with and as odd as this might sound, the knowing might help you be more understanding and kinder to your self.....seriously MS fatigue is the kind of fatigue where if the building was on fire you mightn't have the energy to try to save your self so yeah MS or not, spinal cord lesions defintely means you are not lazy!!

Let me know what happens and if you have any questions don't hesitate to ask.....JJ

fyi; dont have hot baths or hot tubs or hot showers because once upon a time they use to put people they suspected of having MS in a hot bath to diagnose because by rising core temp it would cause a psudo relapse (temporary return or worsening of MS symptoms) and heat will definitely exaserbate symptoms like fatigue until you've cooled down and rested enough..
Helpful - 0
987762 tn?1331027953
COMMUNITY LEADER
Hi and welcome, sorry for not responding sooner to your questions.....unfortunately those results are not going to help much for lots of reasons but to give you an idea what to look for when it comes to LP results and specifically if its consistent with a neurological condition like MS or not, then you need to look for is everything that mentions "Oligoclonal bands"

You might need to keep in mind that if your neurologist who is an MS specialist, is saying both your brain and spinal MRI's are showing lesions consistent with MS, and you definitely have already experienced symptoms consistent with MS ie MS Hug, which by the way is literally caused by spinal cord lesions, wether or not your LP results show unique Obands or not might be your neurologist is looking for additional diagnostic MS evidence to diagnose you with confidence...  

...but even if your LP dont show unique Obands and is absolutely normal,  unfortunately normal LP results still wouldn't take MS off your potential diagnosis list because the LP is used for diagnosing many different types of conditions and not just MS, so if you have additioanl MS consistent LP evidence, it will help get you diagnosed and on to disease modifying drugs and symptom treatments with out having to wait in diagnostic limbo but not having additional diagnostic evidence is unlikely to change what your MS Neurologist already believes you more likely have had for some time.

Sorry i couldn't be more helpful......JJ
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Thank you for the response! Well, the full LP results came back and the O bands are showing as none. But, as you said, that doesn't necessarily take MS off the table (as my neurologist said). I am very lucky in that my epilepsy neuro is an MS specialist. He never shied away from the MS diagnosis, specifically because of the MS hug I had that lasted 3 months. So, I realize I'm very lucky in that regard. At our last appointment, I'd had the brain MRI and he had ordered an MRI of my neck, as well as specific blood tests for MS mimics (all came back negative). He told me that even though the neck showed no lesions, the brain MRI did show signs consistent with MS. At one point, while he was mentioning other diseases it could be, I asked him what else it could be and he very pointedly said "I just don't think it's anything other than MS" and pointed to an MRI I had at 43 where they diagnosed white matter disease. He feels certain that because of my epilepsy, they overlooked possible MS.
So, at this point, Tuesday is the big day for me (follow up with neuro). He told me that after the final tests, is when we would set up a treatment plan. As silly as it sounds, I'm relieved. I've been dealing with debilitating fatigue for a while now and was constantly blaming myself (was it my diet, me being lazy?) My neuro made it very clear it wasn't me, and my treatment plan would address much of what I was contending with.
Thanks again for your insight!!
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