My name is Carrie, I am 48 years old. Here is a bit of my history:
For approx 1 year I have had symptoms of numbness, tingling, weakness in my arms & legs, hands & feel. This started mostly on my left side but over the past year has worsened & I now have the sensations on both sides of my body.
I recently had an MRI which showed 25+ lesions in my brain and one "abnormal" lesion in my spine. Not sure what "abnormal" means as I assume in general all lesions are abnormal.
The neurologist I saw on Friday morning, who diagnosed me, is referring me to another who specializes in MS.
I just finished three days of intravenous steroid treatment at my local hospital. Ugh ...
Methylprednisolone, didn't make me feel well. Nauseous, anxious, jittery, headache, irritable, flu like symptoms which I was told were common side effects from the meds.
I am being scheduled for a lumbar puncture and an Evoked Potential Test.
This is all I know at the moment ... I feel numb, in shock, somewhat lost.
Thank you for listening!
Carrie
Written by
Daring_Greatly
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Hello and welcome to an amazing chat room Daring_Greatly, from Fancy1959. You have found a safe place to come talk to people suffering for many of the same symptoms you have, ask questions, and sometimes just cry on our shoulders because at first it is so very overwhelming. We've all been there and we originally diagnosed with pretty much all been through the exact same range of emotions you're now experiencing.
I would ask that you take a deep breath and realize you found a place where you are surrounded by support. The members of this chat room are some of the most caring, kind, and considerate people I have ever met . They will give you positive support and will answer questions and share experiences with you that will lighten your load. You see MS takes all of us down a winding path that is full of detours and potholes. No two suffers from MS travel the exact same path. Yet all of our paths run parallel to yours and if you stumble or fall you will find hands reaching out to grab you by the elbow and bring you up and to assist you and help you too navigate through this maze that MS has made of our life.
Carrie I was diagnosed at 53 and I too had numerous lesions throughout my brain and a large lesion on my neck. The large lesion on my neck is what knocked me down and brought me into the world of MS. Because of the large number of lesions I had in my brain my neurologist estimated I had already had Ms for 10 to 15 years. I've sustained quite a bit of disability due to the fact that my MS was left to ravage through my body unchecked because I didn't realize I had it. If I had realized I would have gotten to a neurologist quicker and got in on a therapy to help rein the damage in. I suspect yours might say about the same thing. Talk to the neurologist. Write down any questions you might have and take them with you so you don't forget any.
I wrote a post about things to avoid for newly diagnosed MS patients. It is called "MS and the things to avoid." Take a minute to read it before you head to the neurologist and it might give me ideas what questions to ask him or her. At the very least it will help you, as a newly diagnosed patient with MS, to understand some of the pitfalls that are going to try to trip you up the over the next few months. Please keep in touch. I hope you feel better. IV steroids are just horrible things to have to endure. But they do their job and help to take the inflammation out of your nervous system and help improve your symptoms dramatically. Remember we're just a post away and please let us know what's going on with you. You're part of our extended family now and we take care of our family members. I'd like you to remember one thing from this entire conversation and that is that together we are stronger! Keep that in mind and stay in touch. Fancy1959.
Thank you Fancy ... It's a lot to take in right now. I went from diagnosis straight to the hospital for IV therapy which hasn't made me feel very well. There hasn't been time to allow everything to settle in. Heck, I don't even know the first thing about MS really as it came as quite the surprise. I will def read your post, thank you for sharing it.
Hello Carrie, I remember it was a lot to take in at first when I was diagnosed 30 years ago. I first went to my GP to describe my symptoms who then recommended I see a neurologist. I told my wife who had always been teasing me about things I did that were odd by asking me whether I had a brain. So she commented that my GP also was questioning whether I had a brain which made me laugh. Then the neurologist sent me to have a spinal tap and an MRI, and, when I showed the MRI pictures to my wife she asked me whose MRI pictures of a brain I had stolen, also making me laugh. Then when I explained that the bright spots in the picture were where my brain was demyelinated she reminded me how often she would question whether I had a hole in my head so the pictures proved her right, which made me laugh again. I think it’s best if you can find someone with whom you can share your trials who can help you turn them into something humorous rather than dwelling on their gravity.
Wise words dmaskal1. It does help if you can have a laugh and keep a smile upon your face. I am curious as to why when you have so many lesions in your brain why do they need to do a spinal tap? I live in the uk and a MRI is enough evidence to show that you have ms. Anyway hello and keep us posted as to your progress, blessings Jimeka
I asked my neurologist that same question. If my symptoms & the MRI is evidence enough, why the spinal tap. I live in Canada, he told me that treatment for MS in our Country is expensive and that it would only benefit my situation if the spinal tap cooberated the other findings.
What is a "normal" compared to "abnormal" amount of lesions in the brain associated to MS. Do you have any idea?
I don't know Daring_Greatly. I am sure someone on here will know. What part of Canada do you live in? I used to live in Port Elgin, Kincardine and Sarnia in Ontario, then I lived in Sherwood Park near Edmonton, but that was 29 years ago, now I live back in the uk. Canada is a beautiful country. I am sorry that the treatment for ms is so expensive, what type of ms do they think you have? Blessings Jimeka
Thank you Dmaskal ... it sounds like your wife is extremely supportive and it is inspirational to know that you can find some humour in this difficult situation. I will remember this in these coming days, weeks, months etc.
I too have a loving, supportive partner, one of the most important things, having someone who has your back.
The next days, weeks or even months will be scary, it is OK to be scared, it is part of a process. Know first, you are not alone and second, you will make it through this. Hearing our full stories right now might be overwhelming and scary, so give yourself time.
For now we will send our prayers, good thoughts, etc., out to you.
Wait to get all the information you can from your doctors then research and ask us questions. Everyone's MS is a little, or a lot, different but they all overlap in some areas. The books can tell you the statistics and what MS should be like, we can tell you what it is like, for us.
I was diagnosed 7 weeks ago and I'm also 48. Mentally, I'm still raw. I feel sad, angry because it took so long to get a diagnosis and frightened because I know what MS can do but I now have an amazing Neurologist and MS Nurse who have impressed me with their knowledge, expertise and caring manner. I started my Disease Modification Therapy today and I'm hoping that soon I'll be in a different frame of mind and feel like I'm being pro-active in fighting this thing.
Disease Modification Therapy (DMT for short) is the chosen treatment/medication you'll be given to hopefully ease some of the symptoms and slow down the progression/reduce the amount of relapses.
I thought I was prepared for the diagnosis but honestly, I fell apart when I was told. Expect to feel a whole bunch of different emotions.
Welcome Daring_Greatly . I'm sorry about your diagnosis, but if you were like I was when I got my diagnosis, I was relieved to finally know what it was. I wasn't less frightened. Just pleased to have some validation for all the weird things I'd suffered through the previous nine years.
We're here for you. To listen when you need someone who really gets it. We have strong shoulders to cry on. We may not have all the answers, but we'll do our best. And last, but not least, we like to laugh as we encourage each other along the way.
Thank you and you're right, it is better to know, understand, educate myself about this than to sit and wonder without a diagnosis of what is going on. I'm the type of person that prefers to know more, than less. Knowledge is power I believe.
I love to laugh ... look forward to laughing with a few of you ... and maybe sharing a few tears.
Wow ... so much support, this is exactly what I need. Thank you to everyone who took time to send me a note and to share some of your personal story. I've had a rough go the past few years. In 2013 I was diagnosed with thyroid cancer, which was removed & I am nearly two years cancer free.
In 2015 I was diagnosed with hypertrophic obstructive cardiomyopathy, which basically is an enlarged heart which causes an obstruction and significant symptoms. I am nearly 10 months post open heart surgery and still recovering just to find out less than a week ago that I have MS.
I don't know what to do ... I am an investigator by nature, have done a lot of research but want to feel prepared for the next neurologist appointment. Questions about symptoms, about my "baseline", what I can expect, what the future holds ...
Hi Daring_Greatly, I'm Lynn and send you a welcome to the group. They are so awesome. I'm just over 6 months into this journey called MS. Have had lots of MRI's, blood work, spinal tap, will be having more tests in March & April. Have a thoracic lesion and lots of spots in my brain. My symptoms are primarily numbness, tingling in legs. Sometimes, my feet turn into lead weights hanging off my legs.
Keep on coming back, this is a great place to ask questions, share your journey and help others!
Daring_Greatly hi welcome to the group. I refused to let them do s spinal tap since the MRI contrast showed the brain lesions for MS and the office clinical testing showed all the symptoms and my history, even temporary blindness in one eye at age 17 (I am now 70) which they no call optic neuritis. Back then the doctor said it was "nerves." Anyway, they had enough "proof" to diagnose that I had it active for 20 years (misdiagnosed as fibromyalgia) and we're willing not to give me the spinal tap. I think neurologists are test happy!! And contrast dye MRi happy! Anyway, research about everything, and don't be abguinea pig but get on a medicine that stops the progression of the lesions as soon as possible. To me, that is so important. People on here call it DMT. There's about 7 choices, ranging from 40-65% effective. The more you research the more you will find there are other lifestyle changes you can try to help with slowing the progression of lesions. I pray you face the future with wisdom, courage, humor, and faith in God
Welcome to you!! I am Elise and have had MS since mid 1990s although, there were some occasional tingles, numbness and the like but most did not stick around for very long. I was Initially diagnosed with Lupus so it was a very unexpected surprise when my Kaiser neurologist flipped my diagnosis from lupus to RR MS. I have tried just about every MS drug; copaxone, avonex, tysabri (was best for me until I flipped from jc neg to jc pos+) so will be starting rituxiban infusion soon..Hanging in there, i was forced to "retire" at 50 (eesh way too early for me... cognition not 100% all the time..All I can say is stay positive, keep moving in any way you can, laugh often and enjoy the simple pleasures in life, including animals (they help)!! My mantra is Keep moving forward.,.make sure you have a good doc team particularly ones that listen to their patients...Bless you! 🐾🙏🏼💕 make it a good 2017. 🌸😀
My name is Brenda and I only found this group a few weeks ago and I was diagnosed with RRMS in Mar, 2011. I wish I had found it sooner. It has already been a great support to me and I've gotten some reassuring info and some compassionate concern. I remember when I was first diagnosed I didn't even know who I should tell or how I felt. I spent the first year just trying to understand how different my life was going to be. The thing that was most helpful to me was just allowing myself to do whatever I needed to do to take care of myself both mentally and physically. I agree with Midgey_Midge06 when she said that you will get what I'm sure is well meaning "helpful" support and advice but I try to only take what works for me and to leave the rest alone.
Just know you are welcome and wanted in this group.
Daring_Greatly love the Wonder Woman! And based on that, I have a feeling u have the inner strength to conquer! But you've found us here and now you have an army of supportive soldiers to help you (forgive all of my military allusions --I'm writing this early AM and my brain is still revving up).
Anyway welcome to our warm and supportive group. I hope the further testing goes ok and I agree with u, what is a "normal" brain lesion?
You've come to a great place for support, though. We're all in this together.
I was diagnosed at age 47? but I know had the illness several years before. I could, in retrospect, pinpoint exact periods of exacerbation and then remission. And I had joked for years about needing to hibernate during the summer, so I wasn't surprised to discover that heat intolerance was a major symptom.
I'll second everyone's advice, and add a couple of pieces from my own experience. First, keep moving. Push yourself, within reason, to maintain all of your physical abilities. Walk, stretch, do strength building exercises - especially core ones. The adage "Use it or lose it" is doubly I true for those of us with MS. If you need to, contact a physical therapist to get a good maintenance plan.
Second, be careful about the steroids. For me, the immediate negative side effects were minimal and I'd actually feel pretty good for several weeks afterwards. However, one of the side effects of long-term usage is osteoporosis. And for us gals, that's an issue anyway. (My first neurologist's treatment protocol involved monthly steroid infusion to keep inflammation at bay. When I changed neuros, and found out about my rather advanced osteoporosis, we switched treatment medications, too. I'm on gilenya now.)
Hi and thank you for your reply Eleyne92 ... I haven't felt any relief from the steroid treatment. I assumed I would by now. I'm still waiting for the appointment with neurologist who specializes in MS and therefore have not started any treatment plan. I hope it's soon
All the way from MSAA HQ, just wanted to say welcome to you, Daring_Greatly and thanks for getting this conversation started with such a great post!
(and nice Wonder Woman pic, btw)
Also, here is the link to a great post started by Community Ambassador Fancy1959 which she mentioned in her reply to you - give it a read when you can:
Hi johnMSAA ~ thank you for the welcome! Everyone here has been fabulous! I have so many questions ... I'm going to look through some of the other posts, I'm sure I will find a lot of info there! Thanks again, Carrie
G'day Carrie, Avoid the lure Puncture, ask y they already have Multiple lesions, U want on an ms drug YESTERDAY tell them to quit screwing around it is YOUR body. The ms Specialist is a GREAT idea, c what he says, personally I might suggest Tecfidera, works well for mr & NEEDLES Seriously get on meds that is most important, argue about the rest later, Enjoy the numbness, beats some of the adventures we have
Take care & best pf luck with your ms journey/adventure/quest. Royce 48 as well .
Hi Bettyolm ...Thank you for your reply, yes, I have been through a lot. Can I ask why you think my MS is 'unusual.' I haven't been officially diagnosed yet. I saw a neurologist who diagnosed the MS but said he is referring me to one that specializes in MS. What is your diagnosis? Carrie
They don't always tell you what type. Frustrating I think but you'll know when your progressing because you never get everything back to where you were prior. My nuero just says it's Ms there's no cure and all we can try to do is slow progression but you will get worse and worse. And treatment supposably can keep you out of wheelchair by 80percent. I have spinal cord lesson as well as brain lessons the spinal ones more likely put you in chair. I get my power chair December 27th
did not catch this before so sorry,AVOID the LUMBAR PUNCTURE, just say no. ou want awn MRI and take valium 2mg( I think) before u go in the tunnel, just avoid the Puncture. Yes I am terrified of needles, especially when they are not 100% needed.
Royce 15+ years in with many many MRIs and no Lumbar Punctures
I had lumbar puncture thank God I scheduled a guided one rather than letting Dr do it. Even the guided one they had extremely hard time getting it into cord and went through nerve root I was getting electricuted hard the entire time and on tilt table stood straight up it took almost 2 hours just to get a few drops. Test came back faint band. Dr was all confused by the word faint. I worked in biotech genetics I explained to her a band is a band if it shows up it shows up no matter how concentrated it is. Kind of retarded that she was confused by that.
I get the t feeling! I’m still advocating this myself. Good luck and awesome pic posted
Sounds so familiar, But I was one year older, but very similar symptoms, 4 days of steroid infusions, and kept doing most of the things I loved doing cycling working as a letter carrier and playing music. Worked half my career after diagnosis and felt good about sharing my journey with others so that the fear and loathing I always had of MS was somewhat demystified and less of a perceived death sentence. Best wishes for a full a " bad ass " life
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