Very Scared

[Mona2222]

Hi.

I recently had an MRI done after experiencing 3 months of tingling in my hands which has progressed to almost total numbness in my fingertips. Occasionally, more frequently in the last 3 days, I feel the tingling in my legs for brief periods, sometimes running down my spine and then into my legs. The impression on the MRI reads: "Two abnormal foci of high signal in the subcortical white matter associated with an isolated cervical cord lesion at C5. The lesion adjacent to right trigone has an oval plaque-like morphology. In a patient of this age group (I'll be 39 next month), with neurological findings that are variable in time and place, the primary differential consideration has to be demyelination. It shoulld be noted that the absence of involvement of the corpus callosum and posterior fossa are somewhat atypical and wold warrant further investigation to exclude other potential causes of white matter disease such as ADEM or an infectious condition such as lyme disease." I am awaiting an appointment with a neurologist (I'm on his cancellation list so I have no idea when it will be). Meanwhile, my doctors are awaiting result on bloodwork to rule out lyme disease and ADEM. I'm worried that this is progressing very quickly and am afraid that by the time I get to see the neurologist my chances of getting a dx and/or chances of some kind of recovery will be severly impeded.

Please, please help.
Sincerely,
Mona

[wadeheather]

How amazing for you that you found a good doctor right away! Many of us are still searching for someone to even listen! I'm so happy for you!

Be well and visit often.
Heather

[ShadowsSister]

I am going to make a suggestion, that some might not agree with, but I do have what I think are pretty sound reasons.
Rather than spending so much time doing all this research why not try to relax a little bit and just for now take things slow. There really is no way of Knowing if you finally learn for a fact that you have MS, what the future will bring. Yes where the Lesions are located can help predict where your problem areas Might be, but I don't think they necessarily indicate what type you have?.

MS, doesn't have to dictate what your future will look like. There are a lot of Mothers who have had their babies after they were told they have MS, there are those like myself who most likely had MS and didn't even know it for many years.

They can't prove it, but several of my Doctors think I had my first attack in or around 1972-73. I had no idea I had MS, so I had my children, a good career, in other words my life moved forward. I had four or five very bad bouts of flu  that took me months to recover from, looking back, I realize I never fully recovered from any of those bouts. My case isn't rare or different from many others.

What I am trying to say is MS doesn't have to control your life today or in the future. NO ONE KNOWS what tomorrow will bring. So I would like to suggest that you spend today in today, That doesn't mean you don't educate yourself, but don't dwell on it day in & day out. Do those things you want to do, prepare for the future you want to have.

Mona, I understand you are scared, we all have had those awful moments of Stark Fear, but you can work through it,  what works for me might not work for you. I happen to believe that you are much stronger than you might be feeling at this moment.

I hope it helps to know you aren't alone. We ( THE GROUP) will be here for you, and this group is so supportive.. I didn't have a support group for so many years. I can tell you it sure does it make it easier when you have the support of so many loving and giving people.

Speaking for myself, I will be here for you, I don't have any answers, but I'll share with you what I have found works for me, of course that doesn't necessarily mean it will do the same for you.

Mona, you have found a very safe place to talk about what ever is on your mind. There aren't any rules that I am aware of.  I have yet to find any subject that's "off limits".
So sweet lady, you hang in there regardless of what the future holds, YOU will figure out how to live your life and do a lot ( if not most) of things you want.

I am sending you loads of Love filled Hugs up your way. If it's OK I'll be checking in with you. Take care and enjoy the rest of your summer as much as you can...
{{{{~!~}}}}

[Mona2222]

Hi you guys,

I realize it probably seems like I dropped off the face of the planet because I haven't been on here for a bit, but I have this thing about computers. While I totally appreciate how effective they are at keeping me in touch with people and info, I tend to associate them with work. Thus, the infrequent visits.

I hope you are all well and enjoying the summer. It's taken a loooong time, but summer has finally come to Calgary and we take advantage of being outside every possible moment that we can!

I have been to a neurologist and he said that he is quite sure I have MS, but cannot give me a dx until he compares MRIs over time. My next one is in November. I still have numbness in both hands and only occasionally in my right leg. I don't know if I should be asking this, but does the numbness in BOTH hands indicate that I'm in for a more severe course? Sometimes the numbness gets intense and feels like frostbite. Then my fingers feel stiff and achy too. And today the tingling went right up to my elbows.

I've been trying to research what I can do for myself while I'm waiting around to see what the next MRI tells me. I have an appointment with a naturopath this week so I'll see what he can suggest. Have any of you tried alternative medicine to help with the symptoms?

I think the worst part about all of this is just having no idea what the future holds in terms of my body. Sometimes I get butterflies in my stomach when this idea gets stuck in my head and I have to work at shaking it loose. My husband and I have been wanting to have a second baby, but I'm nervous that I won't be able to physically care for another child. Hmmm...

My apologies for blabbing all my worries. I guess that's what happens when my posts are few and far between. Let me say that despite all this I am a very fortunate person with tons of support. And my life truly is wonderful. After my summer vacation to see my sister get married, we will be getting a cat which will be the icing on the cake. I think every home needs a pet and ours has been pet free for 2 years now!

[Lulu54]

You're welcome.    Please do come back and let us know if we can be of additional help - we're great listeners and never lack for an opinion to share. :-)   - Lulu

[Mona2222]

Hi you guys,

I already feel a wee bit calmer after reading your posts. Thanks so much. I have a doctors apt tomorrow to review some more intense tingling that has been going on in my right leg and arm this weekend and some cramping in my fingers. Hopefully some of the results of my copius amounts of bloodwork will be back too. I am at work right now on my break. I'm an RN working in psychiatry in Calgary, Canada. I'll be 39 next month, I'm married, and have a 2 1/2 year old son that is just the love of my life. I'm pretty sure he's the smartest and cutest kid on the planet. I just wanted you guys to know a bit about me after you've been so open and welcoming. I will fill out my profile page one day soon, but right now I have to get back to work. Thank you,  thank you.

[Lulu54]

Hi Mona,
There is not much more that I can add to what Quix and DJ have already told you.  I hope you will come through here often to ask any questions that will come up and to keep us posted on your progress.  

see you around,
Lulu

[ShadowsSister]

HI, HERE,
Oh sweetie, I know you're scared, who wouldn't be, I read what Quix wrote, she is so WISE and Awesome in so many ways, soon you'll meet Lulu and all the others. I just want to add, that you came to the right place. In this group of wonderful, loving people you will discover much of the support and acceptance you need now & in the future..
Mona, believe me we all get scared, why wouldn't we? But here in "Our Group" we quickly learn we never have to feel alone, not heard, or judged because of what we think or feel, besides we also enjoy LAUGHING, when necessary we cry together & for each other, not out of pity, NEVER PITY, but because we "get it "..
I am so sorry I didn't see your post sooner, I hope you will give "The Group" a  chance, I know all of us will support & care about you and what you are dealing with...
Speaking for myself , I am adding you to my "friends list", I'll be checking in with you when I'm on line. I am here for you... Sending you HUGS{{{~!~}}} and saying prayers for you & your family....
DJ  (aka) Shadows Sister

[Quixotic1]

Hi, Welcome to the Forum.  I'm sorry no one has responded to you, but the weekends are slow times and all four of the Community Welcome Wagon have been ill or gone.  I am Quix.  I am a retired physician with MS and I try to help out with questions and information.

I'm sorry your are going through this.  We all know how the spectre of MS can raise fear and the not-knowing is even worse.  First, I would like to reassure you that IF this is MS, you should know that MS is not a death sentence.  For the majority of people with MS it is just something they have to deal with from time to time.  75% of people with MS will not even need a wheelchair within the first 25 years of the disease.  It should not change your life expectancy and you should live to see grandkids and great grandkids (depending, of course, on how early you started the family stuff, lol.)  

I would also reassure you that a delay in seeing a neurologist will not change much in your course.  Although it is ideal to get started on a med for MS as soon as possible, the majority of people with MS go many months to a few years before getting a diagnosis.  You are 3 months into a problem and, if this is MS, are already moving toward a diagnosis.  Beginning with a sensory problem like you are (rather than weakness) is actually a better sign for possibly a milder course.

What I am trying to say is that most people have a far worse view of MS than it really is.  We see the celebrities in wheelchairs or hear people talk about it as if it were akin to Lou Gehrig's Disease.  What most people never see is the majority of the 400,000 people in the US with MS who still work, have families and go about their lives.

You have a problem that is common in MS, but less common in that you have the tingling in both hands and apparently both legs.  It would be a little odd for MS to present involving both hands and both legs right from the beginning unless you had a fairly large lesion in your spinal cord.  So, you really need to hold off any specific worries about MS, until more of the workup has been done.

Your next step is seeing the neurologist and we all hope you get a quick appointment.  Do you live in the US?  Also, it sounds like the doctors have begun to look for a few of the many other diseases that can mimic MS.  A lot of this testing is done through blood work, so you will need to be tested for things like B12 deficiency, Lupus or other autoimmune disease, Lyme and other infections of the nervous system, and other things like sarcoidosis.  Having those results will help the neurologist.

Please do not worry that a wait of weeks or a some months will affect you too negatively.  MS does not progress that quickly - the very rare times that it does, the treatments are not effective anyway.  I invite you to hang out here with us and learn what you can about what you are going through.  More than half of our members are without a diagnosis, and we have a lot of experience to share with you.  We also have some essays and articles that various members have written on many of the most asked about topics.  These are in the Health Pages which you can find a link to in the upper right hand of the page.

We will be here for your worries, questions, fears, and to help you understand what your lab tests mean.  As we have people from all over the world, someone is usually here.  It be be okay.  You aren't alone, and we understand your fear.

Quix