Multiple Sclerosis (MS) - please introduce yourself

I was diagnosed with RRMS in 2015, but started with Gastroparesis in 2014. Apparently, that's backwards! Since then, I've also been diagnosed with Trigeminal Neuralgia and Heart Failure. All but the heart failure is due to MS. All this at the young age of 49. My uncle and brother also have MS, but they have PPMS. They are in wheelchairs and I'm still mobile. Anyways, I've had Lemtrada, two rounds, hoping to slow the progression of MS. I tried Copaxone and Aubagio, but they did not help. I'm on a lot of other medications too. I'm a mom of 3 girls. One natural, special needs adult now, and we are raising 2 nieces, ages 8 and 10. I taught Special Education students for 21 years, but had to stop. So, I stay home and try to survive! I'm glad to have found another group for MS. I'm hoping to learn a lot here.

Hello
I am new here. I was diagnosed with MS 5 years ago (I probably had it for an additional 8-9 years) symptoms then would only last a day maybe two and I would go back to being perfectly normal so partly my fault for not going to the doctor and advocatin however, whenever I would go to the doctor I was told I was stressed or working to hard. Fast forward to 2014 when I was working and things really got out of control and they didn’t go away. I feared I must have a brain tumor went for an MRI where they found multiple brain lesions with a suspected MS diagnosis. I went to Boston to have a battery of tests done and two months later I was diagnosed with MS. I sought out a second opinion from another Boston hospital as I have heard to many people either do not get diagnosed when they have MS or it takes forever or get diagnosed to find out years later they don’t have MS. The second doctor agreed with the diagnosis so I began getting my treatment and care a little closer to home. Life has thrown a few curve balls and due to different symptoms I have I can’t always drive the 40 minutes I need too get to my current neurologist office, so I decided to go see a neurologist at UMASS in Worcester thinking I was simply transferring my care from one neurologist to another. This neurologist is pretty sure I have MS however, I am what he calls a “grey” diagnosis because I don’t check off all the MS diagnosis criteria specifically, I did not have oligoclonal bands at diagnosis. All my other findings are compatible with an MS diagnosis. Symptoms, MRI I have juxtacortical lesions that are specific to MS only and many other areas of the brain as well thankfully so far no spinal lesions. I have vitamins D deficiency, and tested positive for having had at some point Epstein-Barr virus and my index is very high. This doctor has me questioning my diagnosis now, worrying about being that person who took forever to get a diagnosis devastated when I got an MS diagnosis and all that entails, took years to accept the diagnosis and now worrying the MS diagnosis will be suspended and here I go back into the black hole of the “I don’t know what you have” from doctors. I have not officially left me old neurologist and struggling to know what to do. Obviously if I was grossly misdiagnosed I would want to know that however, I don’t want to fall back into the unknown simply because I don’t check off every box for diagnosis. I am no longer working so I live off my SSDI and LTD if he undiagnosis me I will lose my financial means to survive and still can’t work. Lots of cognitive issues, fatigue, vision issues, muscle weakness and limbs get tired easily, and lots of pain. This doctors primary focus is on no oligoclonal bands. My original neurologist who did the spinal tap said bands help to definitively diagnosis patients she said from her perspective this test was mainly to rule out other diseases that can mimic MS. This new neurologist and he is accurate said 90% of MS patients have these bands. I also have hypogammagloulinemia (low IGA, IGG, IGM) I have tried to research whether this could provide false negative results in a spinal tap for oligoclonal bands and I can’t find any studies or answers. So now I sit here everyday worrying about taking a DMD and what they can do to me and I worry to not take them and have progression of MS if I even have MS, heads spinning after taking years to accept this diagnosis. Sorry this is so long I could really use some advice and wisdom.

@rjader1266, @luckydog
Welcome to the crazy world of MS. I, like you guys chased my symptoms to make a difinative diagnosis with multiple docs....spent a fortune doing it. Made myself crazy listening to different docs...diagnosed and undiagnosed many times....that why in my latest post here I say I accepted my diagnosis at age 35.
That was 1986.
In 2006, I had to go on a cruise with my mom. 3 1/2 month long cruise.....It blew my MS up. With no time to rest and all the excitement of the ports of calls and shore excursions, along with living with my greatest abuser for all those months, I had EXTREME Changes in my body and especially vision.
Back to seeing new Neuro docs.....
I chose to go for my first and last dose of MS medication. Rebif....
I vowed to never take another dose of med after the changes in my personality from the med. For me the side effect of the med was RAGE, OH DID I MENTION RAGE?????????
I am the sweetest person, but not after the medicine.
My life calmed down after I realized I do have MS and that's the way it is. I learned I had to calm down and start looking for ways to make it easier for me to live along side my MS Cuz it was going to be with me for the rest of my life...
I realized each time I worried, I was sucking my energy and making my MS worse....
I started studying different methods of relaxation to give myself peace. Becoming an expert at obtaining peace ALL thru the day, allows me to live a triumphant life...with MS.
Keep coming back.....
My best suggestion I have is to accept you have this diagnosis. Each of you have been on the diagnostic merry go round long enough....and this is your choice.
My best wishes to each of you. Bright Wings

I have been working with a kinseologist. Last week he shared with me about Collodidal Gold from the health food store. ($9.56)
I went out and got it.
All winter I have been suffering from cycles of shivering, so intense even my bones were shivering. I could not regenerate my energy. Also I would completely lose my appetite, which is not compatible with life. I can't tell you how many meals I ate that just tasted like wood.
So yesterday, I finally chose to use it. I put 2 drops under my tongue and then took 2 more drops an hour later. Oh my, the shivering started big time...way exaggerated from normal. About 2 hours later, they faded away and I have not felt anymore shivering or the rest of the symptoms.
About 3 hours after taking, suddenly I sat up, my upper spine straightened and felt tingles near my bra strap. Wow, have not been able to straighten that curve since 2013 when I damaged that area trying to pick up a very drunk girlfriend for 1/2 hour.
So what this gold product does is repair the electrical system of the brain.
That's pretty cool, right????
I took another 4 drops last night...I feel good today, rested AND I have energy.
I am so grateful. Bright Wings

Thank you for responding, I thought I had come to full acceptance that I have MS until this particular neurologist threw the words of doubt at me after almost six years after diagnoses. Trying to get my head right again, I am pretty confident I have MS however, if truly not having bands is a huge red flag I my need to consider this however, I already had sooooooo much testing five years ago and it wasn’t fun and cost me lots of money out of pocket, that’s a road I don’t want to go down again. This is such a difficult disease to diagnose and to live with physically and emotionally I just feel like I am back at square 1 constantly wondering if I really have MS or something that looks like MS. I have researched every disease that mimics MS and I don’t fit those diseases so everything takes me back to MS 😫

I am so sorry you now have heart failure that must be very scary for you, do they think the MS caused issues with your heart or could it be a DMD that impacted your heart?

Hi, @luckydog - that sounds very difficult, both with the symptoms like cognitive issues, fatigue, vision issues, muscle weakness, limbs that get tired easily and lots of pain. I do not have MS, but I've had the experience of doctors going back and forth about whether I have asthma off and on for years. It's frustrating and troubling.

Glad you have met @brightwings and received some insights from her MS experiences. As you are facing worry the MS diagnosis will be suspended and about going "back into the black hole of the 'I don’t know what you have'” from doctors, plus the concern you'll lose your financial means to survive if the doctor changes the diagnosis, I also wanted to invite into this conversation a few other members whose support might be helpful, like @hopeful33250 @johnbishop and @jenniferhunter.

What physical symptom is the most challenging for you right now, @luckydog?

@luckydog
I hear you on the expense of the testing. Been there, don't want to do it again.
Ok, so what will the difference be if you have this darn dis-ease or not?
Bright Wings

Hi @luckydog - When I'm trying to find new or research type medical information a lot of times I will use Google Scholar (https://scholar.google.com/). Most of the time the information I find is way over my head but sometimes you can glean some information that may be helpful for learning a little more about a condition. I did a search on Google Scholar using the phrase "low IGA, IGG, IGM +spinal tap for oligoclonal bands" to see what it would find and was surprised by the amount of links. Here is a link to the search results:
https://scholar.google.com/scholar?hl=en&as_sdt=1%2C24&as_vis=1&q=low+IGA%2C+IGG%2C+IGM+%2Bspinal+tap+for+oligoclonal+bands&btnG=
I also found a few articles on MS that may help you learn a little more about the condition.

6 Ways to Help You Cope and Accept Your Diagnosis
-- https://multiplesclerosisnewstoday.com/2018/02/07/ms-six-ways-to-help-you-cope-and-accept-your-diagnosis/

MS and your emotions
-- https://www.mstrust.org.uk/life-ms/wellbeing/ms-and-your-emotions

I have several autoimmune conditions and was kind of down when I was diagnosed with each of them. What has helped me get through them is learning as much as I can, doing what I can to help improve the symptoms that are within my capability, and accepting what I can do nothing about...not that I like it.

Hoping you find some answers...

Thank you so much for your response and for taking the time to provide me these links I will check this out and hope I can find some answers to help reassure myself.