MS??

[hreynolds29]

About 2 1/2 months ago all the sudden my toes were going numb and then moved up to everything below my knee. (When I say numb I mean a different sensation, I cant still feel pokes etc..) Went to the doctor and she ran a full panel of blood work on me pretty much looking at my glucose and iron levels. When I got the results back everything came back normal except my ESR, which tells her that there is some kind of inflammation going on in my body. Normal ranges are between 0-20 and mine came back 50 so she proceeded to do another round of blood test to check for Lupus and Rheumatoid arthritis, which both came back negative. I proceeded to get an EMG done which showed normal results. I then started to notice when I look down whether I was standing or sitting I would get this sudden burst of shock/tingling in my lower abdomen, now I get there as well first thing in the morning when I go to move out of bed.  The sensation can sometimes be strong and sometimes be very mild and other times depending on my position it doesn't happen at all. Last week I went and did a MRI on my head and 3 sections of my back (an hour and a half of torture HA) and that was without dye.  My doctor called me and said there was suspicious images found and told me to make an appointment with a neurologist so he can go over them with me and he would at this point have to make the diagnosis. Now with all of that being said I haven't been in any pain and because of the time frame unfortunately I have had time to Google :( and it seems everything is pointing to MS.  Is there anything else out there that could cause these symptoms???? Its a bit frustrating because 2 months ago I felt fine....UGH!

[hreynolds29]

Ohhhh thank ya thank ya thank ya!!

[immisceo]

You may find this on-going post helpful. http://www.medhelp.org/posts/Multiple-Sclerosis/Gilenya-Users-Past-and-Present/show/1469412

[hreynolds29]

HAHA yes I can not wait for the nurses to come out tonight and take this darn thing out! I have survived that process!

I do have to say I did in fact find a very proactive neuro who is heavily involved in MS and maybe you are right, he could be trying to knock everything out and get me on a treatment plan ASAP! He did mention it was a mild form of MS, I guess right now, with the findings from my MRI. A few lesions on my brain and one on my lower spine. Just scared the heck outta me when "Dr Google" started to throw that HIV word out I was like whoaa whoaa whoaa LOL I know that can't be right!  I have chosen to start on Gilenya. I have read up on all of the other medication treatments out there and I think that one fits me the best! I have one more test he needs me to do as well which is the specialty eye exam. Just going down my checklist lol. This process is exhausting WHEW!

If anyone else out there is on this certain one I would love some feedback on how you handled this medication and what you got from it!!

[kwarendorf]

Just to fine tune immisceo's comments a bit..

My MS is not particularly aggressive and my first DMD was Tysabri. In my case it was determined that I'd had MS for more than 20 years before I was diagnosed. I dis not spend those 20 years looking for a diagnosis. In fact I was largely blissfully ignorant to the presence of MS.

When I was diagnosed, based on the length of time I'd had MS my doc thought I was likely beyond the reach of first line meds. I am not now, nor have I ever been, disabled. I go to work. I exercise etc, etc.

I recently tested JCV+ so my time with Tysabri has sadly come to an end.

Kyle

[immisceo]

Glad you made it through the fun that is steroid treatment!

Hmmm. It's interesting he'd look for that. JC Virus is looked for in patients that may begin (or are currently recieving) the monthly infusion Tysabri. This is rarely the first line of treatment for MS and may indicate you have a very aggressive neuro on your hands (I mean aggressive about treatment - not necessarily a bad thing).

Many people have the JC Virus asymptotically in their bodies. The catch is, with this particular treatment (again, not generally offered with Relapsing-Remitting) there is a small risk of developing Progressive multifocal leukoencephalopathy (PML). The risk is small, but the upshot is not great if you are that small percentage that develop this.

Testing positive means a serious discussion about treatment with your doctor. There are those on the forum that can speak to all this form first hand experience. But don't get too bogged down in the minutiae for now. Perhaps just ask what treatments your doctor sees as on or off the table for you and why.

[hreynolds29]

Soo a little bit of an update from last week, I am on my last day of my steroid infusion, 5 days of 1000MG for a hour each day :-( now I just made an appointment to do a blood test that my neurologist has requested, it looks like for JC Virus??!!! What the heck is that and why when I look it up everything that pops up related to it says HIV?????? On the form is says for MS patients and its also associated with progressive multifocal leukoencephalopathy (PML) mouthfull....

[hreynolds29]

Thanks Kyle!! Yes he made me feel really good, I guess as good as I'm going to having MS hah! The biggest anxiety I had about all of this was if he did diagnose me with that what to expect for my future and he made it sound very optimistic! Now I'm ready to find that medication that works best for me and so I can manage it and MOVE ON!! Thank all of you for your support and the information you all provided to help me prepare for this!!

[kwarendorf]

Welcome to The Club (that no one wants to belong to )!

The good news is that now you know what you need to fight. It sounds like you have a caring neuro and that is HUGE. He's right. There are more therapies available today than thee have ever been.

I'm sure you will come up with the right plan to battle your MS :-)

Kyle

[hreynolds29]

Well ladies and gentlemen, I went to see the neurologist yesterday. We went over all of my symptoms, tests and MRI results.  I have a few (6-7) lesions in my brain and one on my lower thoracic part of my spine. He diagnosed me with relapse remitting MS. He told me not to worry that medicine for this has come such a long way, its NOT what it was 20 yrs ago and I should not worry about my future. He said I have it mild and we caught it very early on.  Beginning today I will start an infusion of steroids thru IV for 5 days to get rid of all my numbness. Once I am done with that I will go back to him and we will actually have a sit down appointment to go over exactly what MS is and what to expect, answer any questions I have and to go over all the medication that is available for me as well as find one that will work best for me.

[pm36ly07]

Hi, My name is Penny. I know exactly what you are going through cause I am still going through it.I was diagnosed 3 months ago. It started by me tripping with my right foot about 7 years ago. I know it took so long for me to get a doctor to diagnose.

I would always have some pain and tired a lot but then I do have 2 kids.

Then 3 months ago I lost my vision after have migraines for 2 days. Then i had pain. A eye specialist sent me to the ER. I had a MRI done with and withoout contrast. Seen a nueologist and had a TP done. Sadly they diagnosed me with MS.

I asked myy self the same questions you have asked yourself. It is tough to come to reality if that is what you have. Everyone has different synptoms.

I was wondering if my husband after 16 years would want to be with me. A lady at church that has MS and she is in a mobility cart now (not to scare you) and she asked my husband if he loved me enough to go through this journey with me? That is all that matters.

Also me with MS it is that I had to just except it first. Stop asking questions that have no answer because it isn't if we are bad people or anything, it just happened. Just deal with it and go ahead.

I wish you luck on finding what is wrong. I just tell myself "it could be worst".

[hreynolds29]

Thanks Alex, yes it is scary and confusing. It's hard to think that just 2 1/2 months ago I felt fine or did I??!! Ya know. I'm so sorry to hear about your cancer and I can only imagine hearing someone tell you that. I had a cancer scare earlier this year with changing cells on my cervix. I had a LEAP procedure done and luckily what they took out was not cancer.

I think that is one of the things that has me so confused and why the biggest thing is "why me??" I feel like I have been hit this year and that's when I start the silly questions like "what did I do to deserve this" or "I am a good person and I do everything right" I know deep down I did nothing wrong and this is out of my control but it can be tough to not beat yourself down about it at one point.

Yes I am very please and happy that my doctors have been so proactive with me and have been doing everything they can to narrow it down, even though I feel like a lab rat at times LOL!

I have been trying to stay strong and positive for the most part.  I tell myself I am just ready to hear the diagnosis, tell me how to manage it and move on. I have not allowed my self to get emotional or even let my emotions into the equation at this point.

I think what the scariest thing is of all is I don't know what the future is going to hold whatever they tell me I have. I just turned 30 I have so much I want to do, I have a couple of trips planned later this year and later next year and just not knowing that this is either going to hold me back or not is the scariest part.  

I know all my family will be there for me and I just entered into a new relationship almost 7 months ago. I've recently had these thoughts of well if it something that may cripple me or hold me back from doing what I do everyday now, why would I let him stick around? Why don't I just let him go? He doesn't deserve to have to be held back because of me or have to "take care of me" if I have something that is going to impair me. I know it all sounds silly and don't get me wrong, I don't think he would ever say that, that is me talking, ugh this is all so tough to wrap my head around. Being a single mom I considered myself a pretty strong person with what I have been through but I do not like not having control over myself and whats going on!!

[HVAC]

I know all this stuff is scary and confusing. Some people who come on the forum are finally diagnosed with MS and others have other conditions all together. The good news in your case is it sounds like you have doctors who are doing all the right tests. Sounds like your medical care is proactive.

I come from the freak yourself camp. I can look stuff up online and find the scariest results. Whatever it turns out to be the best method is to take it one step at a time. When I have new test I let the doctor worry about the results until he or she tells me to worry. I say to myself let him worry that is why he makes the big bucks. My PCP is used to me saying "Should I worry?" Even if I should she always says no.

I had MS for 44 years and did not know it. Since I had always had MS symptoms I did not know there was any other way to be. I have now had MS 48 years. My life has changed very little since diagnosis really. I now have an explanation for my weird symptoms.

Today I rode a horse. I train dogs. I go camping.

I also have stage 4 Cancer and I have learned how to deal with the medical symptoms. I have learned Doctors really know very little. I have learned not to worry about tests. I have learned to compartmentalized my life as a patient. I only give it as much time as is absolutely necessary.

I live my life. I spend as little time as possible thinking about symptoms. I write them down with the date so I can tell the doctors. I have so many medical problems it could take up my whole day thinking about them. I have too much to do.

I find things to look forward to. When I was being tested for MS it was a hot air balloon ride and Camping in the Shennadoah Valley. Next week it is a camping trip to the mountains. The near future it is ziplining.

It has to be about balance. This stuff can consume you and make you nuts. Especially when you do not know what is wrong.

Alex

[hreynolds29]

Ahh ok mine was 50 at first then second time went down to 43

[Sierra28]

My ESR was 39. Just out of the range of normal, but not hugely so. :)

[hreynolds29]

What was your ESR level Sierra?!

[hreynolds29]

Thanks for the words of encouragement! tingletingle! This waiting game is the hardest part which I'm sure everyone can agree with!

[hreynolds29]

Boy I can only imagine when 50 rolls around ;-) lol! I agree, everyone so far that I have come into contact with on this site have been amazing, informative and seems to be very supportive and it overwhelms me with joy to be able to have this kind of outlet and to know there are people out there!! So I thank you all for the responses and information!

[PastorDan]

Yeah, if you think you fell apart when you hit 30, just wait until 50!!!  ;-)   Seriously, attitude is a huge part of life, and if you stick around here, you'll see many people like Kyle and Alex (HVAC) who set inspiring examples for the rest of us!  Welcome aboard.  Might as well grab a window seat.

[tingletingle]

Hi HR,
I love your good questions and the positive way in which you sound like you're handing the situation, what is for most of us a very scary rollercoaster.

I too have experienced the numb/tingling in the toes which just kept rising until it stopped a week later at the base of my chest which is where it still remains today. I too have experienced the alarming electricity called L'Hermittes for a period of less than 12 months but I'm pleased to report it has long gone. (well, I'm a two year veteran)

As Kylie said no need for the bucket and chair just yet. You've got a heap of living and loving to do. Keep up the positive frame of mind.

Blessings
Alex

[Sierra28]

I forgot to mention the tremors. Mostly in my left hand and arm, but some in my right hand and torso. That's one symptom I got at the initial episode that has never entirely gone away.

[Sierra28]

Transverse means that it goes from one side to the other. MS lesions/inflammation on the spinal cord are usually found on one side or the other of the cord and/or just affects one side of the body. In TM it crosses the cord and affects both sides.

(Keep in mind this is all a total generalization!)

TM is usually sudden onset -- meaning you can't look back over the years and see a history of similar symptoms. The cause is unknown but it's typically thought to be related to a viral infection. Somehow the spinal cord is attacked, is damaged, and voila, your body goes haywire. Could be immune system related too.

In my case I had a clinical diagnosis, meaning the dr diagnosed me according to my symptoms and neurological exam, as every test they ran came back negative -- including my MRIs. They never found the actual inflammation. (Though my ESR did come back just slightly out of the normal range.)

Mine began with a numb spot on one leg, then moved on to most of my leg being numb, my pelvic region going numb, etc. I always felt it was more significant on my left side, but I did have pain in my right leg too.

My new symptoms showed 9 months later in my arms, most significantly in my left arm. I had numbness and loss of function in my hand and my arm became very weak.

My other symptoms all along were debilitating fatigue, a huge increase in how often I had to pee, constipation and mood issues.

Sorry, this got much longer than I planned! :)

Like I said, I only brought it up because it sounded like it was in both legs and it got worse over a period of time. You can google it and see what you think!

Very interested to hear what your dr has to say!

[hreynolds29]

Also what are your new  symptons?

[hreynolds29]

Wow hmmm TM?? What is the difference between that and MS. I know you explained a little but is that a disease? Is it curable? What does transverse mean??

Thanks for the response!

[Sierra28]

Just throwing in my two cents here...

I am not yet diagnosed with MS, but I have been diagnosed with Transverse Myelitis which has quite similar symptoms to MS, but usually doesn't relapse. In most cases it is a one time deal.

One difference between MS and TM is that TM is transverse, which means the lesion/demyelination occurs across the spinal cord at a certain level, which typically means similar symptoms on both sides. MS presents on one side of the body at a time, typically.

I guess my main reason for bringing this up is that with TM it is very common for numbness/pain to start at the toes and move up. In extreme cases it causes paralysis from the affected level down. But clearly that's not the case with you! Me either. I had several months of symptoms, then I "got better", which really means a new normal because some things didn't get all the way better.

I'm on this board because I suspect that my TM was really an episode of MS because months after I was "better" I got new symptoms. For now I'm doing the waiting thing, trying to find a good doctor who will listen to me!

Maybe your symptoms will be a one time thing (which could be the viral thing the doctor mentioned) too!

Hang in there and good luck!