Multiple Sclerosis (MS) - please introduce yourself

This was 30 years ago....I had experienced optic neuritis a couple years before my hospital stay, so I believe with having 2 episodes of MS symptoms they suspected it. They did a brain,cervical and thoracic MRI. Also a spinal tap. Not sure they always do that now for diagnosis. Is she seeing a neurologist she has confidence in, and that specializes in MS? I have found that I prefer a neurologist that has much experience with MS. Some do more with Parkinson’s and other neurological conditions. If they specialize in MS, they should be more up on the medications available...there are so many now. Anyone with an MS diagnosis should be on a disease modifying medication. Not sure why she has to wait. Did he give her a reason? No fun having to wait. Our minds always go to the worst scenario...I had myself ending up in a nursing home back then. Hard to not worry...feels like your life is on hold. But, must take it a day at a time...if she is confident with her doctor, great. She can always get a second opinion. That is what I did...actually more like 3 or 4. 😳

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Good Morning 🌞,
My name is Regina, I Do Not have MS, but I Do Have Lupus, Fibromyalgia and Degenrative Disc Disease in the Neck and Low Back. Did I sign up for the correct Group?

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I had a spinal tap done as part of an MS panel a few months ago. The neurologist said my panel came back negative but I had elevated protein 58 MG/DL. Standard range is 14 to 45 MG/DL. And slightly elevated Albumin,CSF of 32 MG/DL. Standard range being 13.9 to 24.6 MG/DL.

I have no idea what this means and the doctor won't see me unless I get a full spine MRI and I do not have the money for it.

I have been having panic like episodes since last September. I had altered/loss of sensations on one side of my body and skull, pins and needles, violent vertigo. Out of control heart rate. I have also had short episodes of what seems to be loss of consciousness but not passing out. Just not totally awear of what was going on for a minute or so. I am often left with head pain after my episodes.

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Hi, @bumble81 - You'll notice I moved your post here to an existing discussion, "Multiple Sclerosis (MS) - please introduce yourself." If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

Since you were talking about understanding some results from a multiple sclerosis panel, I thought you might like to meet some of the members here and they might have some information to share from their experiences (please note, however, that we are not medical professionals).

I'd like you to meet @stitchit57 @camper @lilgrizz @sauvee @hopeful33250. I'd also like to ask @brightwings @babette @karlene and @zebraclaire97 to join this conversation for their input. You indicated that you were trying to figure out what your panel results meant, as the doctor won't see you without an unaffordable full spine MRI, and that the neurologist said your panel came back negative but you had the following: elevated protein 58 MG/DL. Standard range is 14 to 45 MG/DL. And slightly elevated Albumin,CSF of 32 MG/DL. Standard range being 13.9 to 24.6 MG/DL.

This information from Mayo Clinic on MS may also be helpful https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/syc-20350269.

Is your primary care doctor willing to discuss your lab results with you further, @bumble81? Have you received any treatment thus far for the panic-like episodes?

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Hi, @bumble81 - You'll notice I moved your post here to an existing discussion, "Multiple Sclerosis (MS) - please introduce yourself." If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

Since you were talking about understanding some results from a multiple sclerosis panel, I thought you might like to meet some of the members here and they might have some information to share from their experiences (please note, however, that we are not medical professionals).

I'd like you to meet @stitchit57 @camper @lilgrizz @sauvee @hopeful33250. I'd also like to ask @brightwings @babette @karlene and @zebraclaire97 to join this conversation for their input. You indicated that you were trying to figure out what your panel results meant, as the doctor won't see you without an unaffordable full spine MRI, and that the neurologist said your panel came back negative but you had the following: elevated protein 58 MG/DL. Standard range is 14 to 45 MG/DL. And slightly elevated Albumin,CSF of 32 MG/DL. Standard range being 13.9 to 24.6 MG/DL.

This information from Mayo Clinic on MS may also be helpful https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/syc-20350269.

Is your primary care doctor willing to discuss your lab results with you further, @bumble81? Have you received any treatment thus far for the panic-like episodes?

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@bumble81
Hello, I am Bright Wings. I Accepted my diagnosis of MS in 1985. Note the word accepted...I was 35 before accepting what I had been told by many doctors before this last appointment.
I live very successfully with my MS. This is a dis-ease that does not go away. ACCEPTANCE of that is so important to the rest of your life.
So how do I live successfully with my MS? I RESPECT the fact I have it and I am going to have some good days and some more challenging days. That's the way it is.
I am PROACTIVE in protecting myself from being too hot or getting too cold, cuz it will come to mess me up for sure and steal my life as I know it and want it.
I GUARD my energy. Each of us has different ways the MS affects us. None of us will share the same story of our progression of symptoms. I often can not regenerate my energy after being too hot or cold or after stressful situations. It sucks when I run out of energy, cuz I know I don't get to play anymore for a while. Grin....
ATTITUDE is everything. I actively sought ways to learn to relax and let worries go...cuz worry sucks energy!!! Find the things that make you happy. Do them!!!!! When I am feeling sorry for myself, I am sucking my energy right out of me. Then my dis-ease takes over. I know I am making living with MS sound easy, it can be or not....its how you choose to live your life. Learning all these things has not been easy. It took many years to put this all together.
SLEEP is imperative to living a successful life with MS. When I don't get enough rest, my symptoms will get worse. I can not get back my energy as fast as when I am rested. Guarenteed.....
I REFUSE to allow this dis-ease to rule my life. So I live along side my MS. It is my constant companion. When I am EVER-OBSERVANT for conditions that are not beneficial for my MS, I don't go there...why, cuz then the MS takes over and I lose days weeks, months or years to the dis-ease. It's my choice. I would rather live my life with me being in control rather than my
dis-ease.
Ok, so that is how to live successfully with MS in a nut shell. By following the words in capitals, I get to be in charge of my life rather than this dis-ease taking control.
I use CBD to lessen the symptoms when they are present which is everyday. The cheapest and best brand I have found is Lazarus Naturals. On my worse days I use 1/2 tsp 3 x daily. The kind I use is CBD in coconut oil, 1200 mg of CBD. If you contact the company and send in a doctors note, now they have increased the discount to 60% over buying it at a store.
I will use CBD until the day I die! It changed my life that much. All my aches and pains went away. I receive no compensation from the company.
I write dis-ease each time because when I am living along side my MS, so many days I forget I have it.
I hope you will print this out and read it everyday.
My best to you, and who ever comes after this and reads it.
Now having written all that, I must also share the polar vortex got me. I am headed into the worse relapse in many many years. So I am being proactive to get myself into a better home that will be easier for me to control the temperature in the house cuz after an el Nino winter comes an incredibly hot summer. I almost died of cold inside my newly rented house a few weeks ago. So I am taking ACTION to get myself into a different home that is more MS friendly.
@lisalucier thanks for bringing me in here. I need to be here now.
BRIGHT WINGS not flying so high right now

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Thank you for the reply. As far as I know I do not have MS luckily. It sounds like you are managing your MS very well. I wish you the very best and continued good health:)

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Thank you for the reply. As far as I know I do not have MS luckily. It sounds like you are managing your MS very well. I wish you the very best and continued good health:)

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