Not Diagnosed, but...

[cedarhollow03]

Hi, first time posting. I have symptoms of 2-3 numb toes on left foot for 6 weeks and tremors (uncontrollable shaking in certain positions) in right leg for almost 2 years. The shaking would come and go so I never mentioned it to the dr. until the numb toes started.

I had an MRI last week and just got a call from the nurse saying you do not MS. So, I said well what about the numb toes and leg shaking, there was a pause and she then said do you want to see the doctor about your results?? YES! I have an appointment next week to see the doctor.

I guess I needed to share because now that the No MS has come in to play, my husband says that I can now not worry about it and just go on with life. I am wanting to know why I have these symptoms.

What do you think I should ask the doctor? Can I see the MRI result myself? I feel like I am going crazy because I have been looking at all the information on MS since last week when they told me that would be what the MRI was for and think that I may have MS. But now I just don't know what could be happening with my body.

Thanks for any insight you can give me.
Jamie

[Lendi]

Jamie, frustrating for sure and scarey, too. I'm sorry you're going through this.

perhaps theres a simpler reason for your problems; and one that the Dr. didn't feel the necessity to talk to you about ASAP. Like a pinched nerve or back issues.

Also, did you see a PCP or a neurologist? (Many feel that MS neurologists are much better but I have just a regular neuro.)

Best of luck to you. I know this will be a long week.

[mjan]

HUGS Jamie.. so sorry for all you are struggling with..but glad you are sharing your thoughts/feelings with us.

If it were me, I would get a copy of the written report of MRI and CD. Its good to start a file on your medical reports. Also make a list of questions you want the MD to answer at your appt.

You would have to know if they found ANY lesions and if the radiologist stated if there was any demyelination going on...or not.

Ironically one of my earlier symptoms was numb toes and the bottom under my toes on one foot. I already had lesions, many of them but NOT the MS kind. It was much later that finally the MS shaped lesions showed on MRI.

Another question: is this neuro a MS one? Many neuro's make diagnosis, or not but MS neuros just have more training and experience.

I remember too that my husband was with me when they told me my LP was normal..he thought that sounded like good news..I was devastated and cried as I just KNEW something awful was going on. He just could not understand..but folks HERE do understand hon. He was not educated or aware..he was confused with MY response.
Still it took several more years to finally get a MS diagnosis..and I had given up chasing for a DX when I did.

Hang in there.. we'll be here for you on this journey.

Warmly, Jan

[Lorimo1]

similar situation

I also have had multiple MRI's with no leisons - but I have many symptoms: numb fingers, toes, feet, trouble controlling urine, no libido, poor balance, edema in feet, can't concentrate or do complex tasks, body tics, and major fatigue.

My neuro just had me do some nerve testing. When I looked into it I realized that there are alot of other conditions which cause the same symptoms - which is why MSand nerve problems are so hard to diagnos.

My advice is keep pushing your doctor for answers. Ask him what is next?

Lori

[cedarhollow03]

Thank you for the responses, I have only gone to my primary care doctor. He is the one I meet with again next week. I have been with him for 9 years and like him so I will try and ask him as many questions as possible.

I think that my husband means well just that he doesn't understand fully how concerned I am with the symptoms.

Is it rude to ask for copies of the results?

I guess I need to be patient with everyone. I am one that wants to be knowledgeable so that we can move forward. I had cancer 20 years ago before the internet and went directly to the library after the diagnosis, wanting to know the good, bad & ugly. Knowledge is power.

Maybe it is just back issues, though that is not something that I usually have.

[Lorimo1]

get results

Its a good idea to get both a disc and copy of the report for your MRI and any other testing done. One you can see the report from the radiologist yourself and then if you decide to go for a 2nd opinion you have your own set of documents. I get them from the place I had the MRI. They are happy to make copies for you.

[Shashi]

Seven years ago, I started having really bad fatigue that would hit in the summer and last a month or so. Six years ago, the right half of my chin went numb and then I got a spot the size of half dollar that was very hot on my leg. Five years ago, three of the toes on my right foot went numb and I started having hand tremors. Shortly after, all heck broke loose and I started having buzzing sensations, shooting nerve pain, even more fatigue, muscle spasms, etc.

My first MRIs were normal. In fact, they were so normal that my neurologist (an MS specialist) said they were almost abnormal. I've had blood tests and other tests for everything else that could possibly be wrong and no results.

Last year, my brain MRI stopped being normal and showed five non-specific T2 hyperintense lesions. When I asked my neurologist, who is an MS specialist, about it, she said we haven't yet ruled out MS. But who knows when or if I'll ever get a diagnosis.

Sometimes it takes time for the brain lesions to show up on MRIs, so just because it's normal now doesn't mean it will always be. And sometimes, there might be something else going on, so you need to make sure you're tested for other things, like Vitamin B12 deficiencies, Celiac disease, Sjogren's syndrome, pinched nerves, etc.

Good luck and hugs,

Lisa

[cedarhollow03]

Thanks Everyone,
It sounds like this could be a long process if it is MS and a "treasure" hunt if it is not.

I have fatigue right now that I thought was related to stress from work. It still could be but it is the weirdest that I am soooo tired that I can barely make it home to the couch and I need to take a nap before I can function to make dinner. I also started back on my anti-depressive, I have a history of panic (anxiety) attacks.

You have helped me with some questions that I didn't know to ask. This has helped me calm down a bit and try to take it one day at a time. I feel like this is a safe place to share. Again thanks for the hugs and information.

Jamie

[jumpinjiminy]

Hugs, Jamie. We have a fellow limbolander. Come and share with us in the limboland check in thread Minivanmama starts every week.

I've been getting tested since last year when many symptoms I've been accumulating for over 20 years came on after a sauna session. There have been countless blood draws, MRIs, spinal tap, nerve conduction studies, VNG, EEG, BAER, VEP, and now I'm waiting to hear back to get scheduled for an upper GI with gastric emptying. I won't go into the many symptoms that have come and gone over the years, especially this last year when I finally started putting it all together.

While reading up on 7T MRIs and what they're uncovering in MS patients, I finally realized they don't determine you have MS until lesions show up in a certain place, a certain shape, and in multiple places.

So my new line of thinking is this: I may have MS brewing in my body, but it's not really MS until it shows itself on the MRIs. They say it's a clinical diagnosis, but everyone I've seen basically rules it out because of the MRIs. Most of my other tests came back normal too. There were a couple of oddities, but nothing definitive. They've tested for most of the mimics, but still won't call it anything until the MRIs show it.

Now I see it as it's trying to catch me. And the question is, will I let it? I have fatigue like you and probably could have qualified for disability a long time ago because of it. I've never been able to get through a 40 hour week (even sedentary work) except during my first pregnancy, without feeling like a zombie by Friday. But I adapted my life around it without realizing how bad it was.

Anyway, I think that leading a healthy lifestyle, resting when my body was telling me to, and having a carefree attitude about the little things might be why it hasn't fully expressed itself by now. I count myself very fortunate to have this thing brewing inside of me and not have had anything big happen yet. I'm sure this has been with me since my teenage years, and I'm in my mid 40s now with plenty of life ahead of me.

The best thing you can do for yourself is to focus on getting as healthy and fit as you can, and have patience during the process. You will undergo many tests. It will be frustrating. And you might change neuros several times. But do keep in mind there are many things this could turn out to be and docs have to test for all of them before making that call, especially if your MRI is normal.

[cedarhollow03]

MRI normal

So, I had my doctors appointment yesterday for the follow up of the MRI. It was fine. My dr. says that there was nothing suspicious on it, so I asked him about the numb toes and he says not to wear any tight shoes or the hiking shoes I wore when I noticed the toes. He seemed encouraged that my toes were tingling and hurt in addition to them being numb. Something about maybe they will "heal" themselves.

So, I asked about the right leg tremors and he said he had no clue what could be causing that. Maybe muscle weakness in that leg and that I should try to strengthen that side. He said continue with the yoga. I started running last year and ran a 5k in October, but tapered off in winter. Right now my DH and I walk/hike at least 1-2 times a week. I have had the tremors for at around 2 years that get worse when doing too much or when I have high emotions or just shaving my legs. Standing on tiptoes makes it worse.

We talked about the fatigue and he says that maybe the Celexa that I take for panic attacks/depression is making me tired. Fatigue is not usually the side effect I get and I take it at night. My side effect is nausea.

I am going to take your advise jumpinjiminy and make the best of my days and keep moving forward. I already have noticed that I am adjusting my way of doing things. One of the threads mentioned keeping a journal of when sx come up so maybe just for my mental health I will do that. If all this turns out to be something other than MS I will still have the journal.

Thanks for all the encouraging words. My DH is relieved and I am not sure how I am feeling right now. I think that this is not yet finished.

Blessings

[mjan]

Well the journey will continue..how or what.. you may not know for awhile. BUT.. know this ..something is going on.. BUT.. it does not help to sit and worry..just cont to document.

Maybe I missed this, but is this neuro a MS doc? And did you get the written report on the MRI? Keep records as this will help the next doc/or same one, in knowing what's happening to you.

Trust me, I know its hard to KNOW something IS going on, but there is NO name to it.

LIVE your life, best you can, document and come here for support/info ok hon?

Warmly, Jan

[Lendi]

Jamie, I really am encouraging you to see a neurologist. There are no MS neuro in my area but a regular neuro is still more informed about all kinds of diseases than an MD. They run lots and lots of different tests to determine what is and what isn't going on.

Still and all I'm wishing you much much luck and happiness and will look forward to perhaps seeing more of you here on the board.

I'm impressed with anyone who exercises like you do, btw. Very cool!

[cedarhollow03]

Jan~thank you for the encouraging words, the dr. I went to was my pcp. I can't see a neuro until he gives me a referral, because of insurance. No I didn't get a written copy of the MRI, I guess I should. Stupid of me but I feel kinda guilty asking. I like this doctor and don't want him thinking that I don't trust him.

Lendi~I am not sure that there is a neuro here. I live on an island in WA, but the mainland is only an hour or so away by ferry. I have heard that they have wonderful MS neuros in the next county over because of the high population of MS there.

I started running last year kicking and screaming ;-) My DH had prostate cancer in the spring and he was always a runner and in the summer he wanted to get back into shape so I wanted to encourage him and do it with him. I found that I really like trail running more than road running. I am a plodder and he is a sprinter. I let him go ahead of me. It has brought us closer! I also took up yoga under duress, my best friend from high school (I am 47) opened a yoga studio 2 years ago and I wanted to support her by subscribing for 6 months, well.... found that I love yoga. I still can't touch my toes, I do my best. I am much stronger now. Yoga is harder than it looks

Thanks for all the support. This has been scary since the doctor mentioned MS. I will continue to move forward.

[Lendi]

Your positive attitude is wonderful. I think, keeping as active as possible is good for all of us no matter what the situation. Even if sitting in a chair and stretching.