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MS Less Likely


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Old 12-13-2017, 08:21 PM   #1
Nera
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MS Less Likely

Hello!

Since I last posted, I had a lumbar puncture and MRIs of my brain and spine.

My neurologist said that my brain MRI was stable and there were no lesions seen on my spine.

My lumbar puncture results were 0 oligoclonal bands in serum and 2 in CSF.

Because of this, my neuro said MS is less likely, and wants to do an EMG/nerve conduction study in January on my left arm and left leg to help figure out the cause of my symptoms.

I had read on various sites that oligoclonal bands in CSF only could mean demyelination, infection, or inflammation and messaged my doctor asking since all those were ruled out in during the LP if it was normal to have them in CSF. He said because of the lumbar puncture and MRIs he felt MS was less likely.

I am so confused! Do any of you think that carpal tunnel could cause face, neck, chest, and flank numbness/tingling? Everything is on my left side and I don't know enough about all the nerves to know if they will connect all the way down, miss your leg entirely, and still affect your foot.

Any advice is appreciated

 
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Old 04-27-2018, 03:01 AM   #2
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Re: MS Less Likely

Hello again!

So, the EMG/NCV test was normal. I was surprised because I was expecting carpal tunnel since I type a lot, but he said there was nothing to cause the numbness, tingling, shocks, or weakness that I experience.

Then, he told me that I was stressed, anxious, or depressed and to see a counsellor. Which I was anxious and stressed going into all these tests, but I don't think I am anxious or stressed in general. I also don't think I'm depressed...

I asked about the O-bands and he said they wanted more for a DX of MS, and I said, you said it wasn't so what causes them? He said inflammation in the central nervous system, but offered no *real* explanation or what I could do to help alleviate the inflammation. The inflammation caused the lesions as well?

Since this was our first face-to-face since the LP and MRIs, I asked him about the brain atrophy and "black holes" and he didn't know--meaning that he brushed my question off. He did say that my dizzy spells are from high blood pressure--which I never had until I started seeing him and I told him that, so then he said they were from low blood pressure.

I do think it terrible that someone can have inflammation in their brain/CNS causing lesions, shrinkage, CSF o-bands, and "black holes" and it just be okay, no counselling on what to do or where to look

Since then, I just laugh when something goes numb or shocks me and tell myself it's all in my head, you're imagining it! It doesn't work but it's better than freaking out that my brain is inflamed and might pop somewhere

Anyway, I was hoping that someone else may have had something similar and could give some advice on where to go/what to do from here. It's no fun to feel ill and seemingly have "real" medical evidence of something going on and then no answers whatsoever.

 
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Old 04-27-2018, 06:54 AM   #3
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Re: MS Less Likely

Quote:
I asked about the O-bands and he said they wanted more for a DX of MS
Your Dr. is correct. A finding of 4 or more cerebrospinal fluid (CSF)-specific bands is consistent with multiple sclerosis. This would represent active demyelination, many with MS have more than 4 (I had 6).

Many conditions can cause brain lesions and is not specific to MS.

You can always take your lab work results and MRIs to another Neurologist for a second opinion.
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Old 04-27-2018, 08:01 AM   #4
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Re: MS Less Likely

Dear Nera,

Clearly something is going on, but try not to focus on just one type of diagnosis. The brain issue may be from a different source. Many things are not so easy to diagnose.

You can try a rheumatologist. Check doctors out on Yelp to see what patients are saying. Meanwhile look on the internet for treatments you can try for yourself to make yourself comfortable. I have all sorts of symptoms, and it takes along time sometimes to rule things out and find solutions.

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Old 04-27-2018, 01:41 PM   #5
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Re: MS Less Likely

Hi Snoopy,

Yes, I know that is what doctors want for an MS diagnosis. However, if you notice that I said it is NOT MS and was asking him what else could cause them because I was hoping he could give me a bit more info instead of repeating more o-bands over and over LOL. I asked him this because from what I have read online 2 CSF specific O-bands is not normal (not necessarily for MS but that something isn't right). I do not want MS or any other disease/condition. I think I am "over" seeing neurologists

Hi YaYagirl!

Honestly, I am not focusing on any diagnosis except for inflammation somewhere in my brain/CNS. He said it is not MS and I am relieved No one has suggested a rheumatologist even after all the blood work and tests. I will be seeing my PCP in a couple weeks so will ask him if seeing a rheumatologist might be helpful in getting to the root of things. Turmeric is an inflammatory that I have been taking for several years now. It works wonders at preventing pneumonia! So happy about that because I have had pneumonia about 10 times and do not want it again! A big problem has been muscle spasms though. I have searched for things for that but so far nothing works, and my PCP says "I know of nothing that helps that." Yeah, he's not so fond of herbal remedies/supplements ha!

Thank you both for replying. I was kind of hoping someone had a similar experience and could say what they did, etc. I guess we're all different though so no such luck.

Wishing you both health & happiness!

 
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Old 04-28-2018, 07:57 AM   #6
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Re: MS Less Likely

Dear Nera

We don't need for a doctor to suggest a rheumatologist. We can ask the primary care doctor for a referral esp when other tests have not brought any light to the subject.

I take Magnesium Citrate (easily assimilated) for muscle cramping. I do not bother asking medical doctors about supplements because they are taught medicine and surgery with precious little emphasis on nutrition. There are often very knowledgeable people at health food stores.

For muscle spasms usually what is required is activity. Muscles don't stay relaxed without regular use. Do you get regular exercise? Are your muscles wasted or weak?
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Old 04-30-2018, 10:19 PM   #7
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Re: MS Less Likely

YaYagirl,

Actually, I did ask him about a referral to a rheumatologist about 1.5 years ago, but my ANA (that panel with all the different titers, etc.) came back negative so he said I needed a neurologist lol. I will ask him again though.

I think doctors are crazy! Mine is a DO which I thought would be more "whole body" wellness/health than an MD, but I'm thinking they are pretty much the same

Yes, I do stretching and walk when I wake up. Plus, I feed my cats and play with them for a bit. I also get up to walk and stretch every hour to hour and 15 minutes when I'm working (I work on the computer). I also do carpal tunnel stretches most every day.

I mostly get horrible spasms in my neck and back. Occasionally, my back goes crazy and it feels like I'm being squeezed to death. Those are the worst ones EVER! I honestly think the squeeze to death spasms are more painful than labor

Is magnesium citrate similar to magnesium sulfate? I searched for magnesium for muscle spasms and sulfate came up more. I tried passion flower for sleep and it is supposed to help with muscle issues, but it didn't work for me.

Thank you very much for the suggestion! I can't wait to try it

 
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Old 05-03-2018, 03:05 PM   #8
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Re: MS Less Likely

Dear Nera,

Citrate and sulfate are completely different. One helps the mineral assimilate into the body and the other is is used in soap. I would not use mineral sulfates.

When you want a referral, you can say "please just humor me". Usually insurance is behind the refusals, and they won't want the responsibility of saying no. Or ask for the referral as a second opinion. If the doctor refuses, he/she is acting like God that knows everything, and I would change doctors.

Yes, usually a DO is terrific, but maybe that one is too young to have learned to listen to the patient. That seems like he is going by a book. Lack of experience is usually why they are like that, IMO.

I don't remember what I wrote last time, but when I see a doctor the first time I explain that I greatly respect his/her expertise and education, but I live in this body so I need to make my own decisions. Experienced, great doctors are relieved that they don't have to be all-knowing and that we can work together.

You may benefit from a chiropractor that uses massage therapy. I have to do that for my muscular-skeletal pain. I personally use herbs for health & digestion issues but not for muscle/skeletal pain.

Let me know what you do and what works for you. Reading what helps others has helped me the most.

Oh yeah, another thing that really will help anyone is to get a bag of Epsom Salts from any store that sells drugs and take a bath as hot as is comfortable for you with a cup or two of the salts dissolved in it. The magnesium will go into your body. SOOOO relaxing! I wish to heaven I could get in a tub! I'm too crippled to get back up or I would.
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Last edited by YaYagirl; 05-03-2018 at 03:15 PM. Reason: more info

 
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Old 05-03-2018, 04:26 PM   #9
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Re: MS Less Likely

Nera, Approximately 20% of MSers do not show Obands in their CSF or serum. I am one of them...this is not a reason to rule out MS.

Is your doctor using the revised McDonald criteria to go by? You should ask hin about that...this is what all doctors use to dx or rule out MS.
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Old 06-13-2018, 09:55 PM   #10
Nera
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Re: MS Less Likely

YaYagirl,

I started taking magnesium supplements from Walmart that said for joint/muscle health. Anyway, I took them for almost 2 weeks and it did seem to help lessen the spasms. Then, I went to my PCP and told him I was taking them--because I try to tell him everything I'm taking, you know? So, he goes "WHY are you taking magnesium?" I told him for the muscle spasms and I heard and read it's supposed to help them.

Well, he went into how they recommend magnesium supplements only if there is a deficiency and drew labs. He told me to stop taking them because my magnesium level is fine. My question was/is what if it was fine because I was taking the supplements? Nope, he told me to stop.

So, I did and within 2-3 weeks they have come back Maybe I shot myself in the foot so to speak with that, huh? I think I'm going to start taking them again just so they lessen up again.

I adore Epsom salt soaks! They have one that has ginger and clay in it and it is magnificent. It feels amazing to soak in that.


As for the chiropractor, I have been but not to one who uses massage therapy. They seem to get upset with me because I cannot let them touch my neck. It just seems so very unnatural and dangerous to me. I literally lose it if they try to touch my neck lol. It is okay for them to work on my back, but not my neck. There is a massage place that opened up nearby so I may check there about getting a massage


Thank you for the suggestions and I hope you are doing okay.


Quote:
Originally Posted by YaYagirl View Post
Dear Nera,

Citrate and sulfate are completely different. One helps the mineral assimilate into the body and the other is is used in soap. I would not use mineral sulfates.

When you want a referral, you can say "please just humor me". Usually insurance is behind the refusals, and they won't want the responsibility of saying no. Or ask for the referral as a second opinion. If the doctor refuses, he/she is acting like God that knows everything, and I would change doctors.

Yes, usually a DO is terrific, but maybe that one is too young to have learned to listen to the patient. That seems like he is going by a book. Lack of experience is usually why they are like that, IMO.

I don't remember what I wrote last time, but when I see a doctor the first time I explain that I greatly respect his/her expertise and education, but I live in this body so I need to make my own decisions. Experienced, great doctors are relieved that they don't have to be all-knowing and that we can work together.

You may benefit from a chiropractor that uses massage therapy. I have to do that for my muscular-skeletal pain. I personally use herbs for health & digestion issues but not for muscle/skeletal pain.

Let me know what you do and what works for you. Reading what helps others has helped me the most.

Oh yeah, another thing that really will help anyone is to get a bag of Epsom Salts from any store that sells drugs and take a bath as hot as is comfortable for you with a cup or two of the salts dissolved in it. The magnesium will go into your body. SOOOO relaxing! I wish to heaven I could get in a tub! I'm too crippled to get back up or I would.

 
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Old 06-13-2018, 10:24 PM   #11
Nera
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Re: MS Less Likely

MSNik,

Hi! Yes, I read about that too when the LP was ordered. I researched lumbar punctures because the idea freaked me out lol and it still does!

The neuro said it's most likely not MS based on only 2 CSF-specific O-bands, completely normal EMG/NCV, and the fact that my follow-up MRI was stable which is good right? The only thing the follow-up MRI report said that the other one didn't was that there were black holes and atrophy.


I asked him about the O-bands and told him that I read (on legitimate sources) that 2 CSF-specific bands was not normal except at Mayo Clinic, so what causes them. I read him a few sources for this from my notebook which I don't remember without it, but I do know I told him that the McDonald Revised 2017 even says 2 was not normal too. He just raised his eyebrows and said again 4 or more for MS. I was like, you said it is not MS, but again what causes the bands? That's when he said CNS inflammation and told me to see a counsellor.

I have been looking into other causes for them, but so far the ones I find online have been ruled out by testing or are congenital and definitely could not the cause.

Honestly, I am of the mindset that whatever is going on, it hasn't killed me yet, so going to try to just self-treat symptoms and breathe Not sure what will happen in July when I go back, or even if I should go back since he thinks I just need a counsellor. That really kind of hurt given what I felt was objective evidence of something going on, you know?

Thank you for replying. I appreciate it. This place is just wonderful to vent the frustration and upset over doctors and get advice Hope you have a wonderful day.

Quote:
Originally Posted by MSNik View Post
Nera, Approximately 20% of MSers do not show Obands in their CSF or serum. I am one of them...this is not a reason to rule out MS.

Is your doctor using the revised McDonald criteria to go by? You should ask hin about that...this is what all doctors use to dx or rule out MS.

 
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Old 06-14-2018, 03:16 AM   #12
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Re: MS Less Likely

Nera, I would get another opinion from a MS specialist. Your doctor is quoting you old information. The simple fact that you have the 2 Obands AND black holes? This is classic for MS. I have over 15 black holes at this point, and well over 100 lesions and guess what? NO OBANDS! I still have MS.

See an MS specialist who knows what they are looking at....its time to find a doctor who is not relying on literature to make a diagnosis but on what is in front of him.

As for what you said- you are absolutely right to carry on as if nothing has happened. There is very little you can do even if you get the dx; however, there are drugs you could consider to slow down the progress of the disease. For me, every year I have additional lesions. I took all the meds a decade ago up until 5 years ago, I developed antibodies to every one that I went on...but for others, they work. You will have to discuss the pros and cons of each available drug to make your own decision, but you wont get to have that decision with this doctor...please consider finding a MS specialist to discuss this with...there very well could be more going on than you are hearing and this doctor is not giving you enough information.

Best to you.
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