Searching for dx.

[redhead44]

Hi everyone, I've been quitely reading your forum for the past 2 mths.  I am in the process hoping to find a dx.  All my symptoms started last Dec. 07 with the tingling of my feet. Then in Jan. I saw my family doctor which set up an appointment with a neuro. and put me on Amitriptyline for bedtime. As time went on the muscles in my legs were moving all the time.  More noticable when not standing, but can see them and feel them.  It doesn't pain but legs just get real tired and have trouble moving them when first get out of bed.  They seem like logs. So she put me on Lyrica.  This Medication really caused a lot of problems.  Weight gain, being really hyper when first on the med, mood change and feel like I was in a cloud.   As the problems stayed the same she just kept uping the Lyrica which just made my mind and nervousnous worse.  Then I had tunnel vision , slurred speech and trouble communicating.  She took me off the Lyrica completely.  She ordered a MRI of the head for the next week through a neuro.  This came back good.  Then the neuro done an EMG which came back good but did put me onPramipexole, which has done nothing for me.   Then he done a MRI on the C-Spine and this come back good.  He did mention a spinal tap but wants to see me in his office first.  My symptoms have gone up in my arms.  They feel weak and cold most of the time the same as my legs.  I also get dizzy spells and when I lay down the room spins.  Walking on level ground isn't too bad but stairs is another thing.  They have also done alot of blood work which all come back good.  I have low B12 and low platlets which I take B12 pills and have my blood tested every 3 mths.  All in all I feel like my dr.and neuro are doing their best and not giving up.  My biggest concern is  does anyone have their muscles in their legs move all the time? And does these symptoms relate to MS?   Thanks for listening I'm a newbe on here.  Redhead 43

[redhead44]

Nice to meet you fellow Canadian.  I will ask my neuro when I see him for a copy of my reports.  Waiting for results is tough.  Especially if your test is good they won't call, only if it's not good.  So you've been waiting for a while also.  How are your dr's with you?  I read about pain in your legs.  That's not good.  :(  I don't have much pain just more the pins and needles , and muscle movements(fasciculations).Hope you find a dx soon. I see my neuro Monday.  Ready for the next step. Thanks

[redhead44]

Thanks for the explanation of the muscle jumps.  Didn't know what it was called.  I've had them since March '08.  They are located in my legs and at times in my feet.  It started about 3 mths after the tingling in my feet started.  Now the tingling is today all the way up both legs with numbness.  My legs and feet will fall asleep even if I'm standing.  I just find my legs get so weak from the muscles moving non stop. My legs don't actually pain or feel restless, it's just more annoying and tiring.  They do sometimes knot but don't completely reach a charliehorse.  I also feel the band around my leg sometimes. It feels like I've wrapped a tunic around. Now the weakness and tingling has gone to my arms and hands.  I work retail so I'm on my feet hours at a time and to get clothes down with the hook, I feel the blood rush out of my arms.  They will just go weak and cold. The Mri machine was closed in. We have only had it for about 5 years.    Thanks for listening.

[jensequitur]

Hi, redhead!  Welcome to the forum.

Sounds like you have a good idea of what's going on.  I would recommend both - get the MRI with contrast, and a spinal tap.  

The muscle jumps you mention are called fasciculations, and they're caused by the nerves leading to the muscles.  Not really sure whether it's the brain, or the nerves themselves causing the problem... but I've got one right now in my behind, so I can sympathize!

[Wobbly]

welcome to our forum...sorry didn't get online till today...I had a busy weekend... I see you are from Canada too...there are a few of us here...I'm from Vancouver BC area..

I'm not yet Dx and in the process of waiting for my Neuro to give me results...I have the results, but need to hear what he has to say about them... one thing I learnt over the past three years of tests and Dr appt.

when I get blood test, MRI, EMGs etc etc...I always ask for a copy for myself...that way I keep a file of my results...and when I'm at the appt...and they want me to complete a request form...It's done there and then...

and you get the results before your appt (which can take quite awhile sometimes) to get the results from your Drs...OK..

stay with us and keep us updated on how things are going...hope your feeling alright now..

take care
andi

[redhead44]

Thanks for responding so quickly.  I now feel like I can vent or just talk to people that have the same worries as I have.  My family are very supportive but I know they probably get sick of hearing me complain, mostly because I don't look sick or act sick.  I still work and carry on my daily tasks whether I want to or not. My Mri was without contrast but by reading on this site I knew there was certain steps that were to be taken. Ex: Mri of the Head; Mri of the C-Spine; Spinal Tap and Mri with contast.  First 2 were good, on to the third.  Shouuld I get the contrast first or keep going with the spinal tap?  My neuro was just going to do the spinal tap until I mentioned to him that my family dr actually saw my muscles moving.  I'm from New Brunswick , Canada and don't know what type of Mri machine they used but I will call the Mri dept. to see if they will tell me and also see if my neuro will give me copies  of my Mri's. I am back to see him Sept. 8.  I will look up those books too.  Anything to help.  Thanks

[JulesL5S1]

Welcome,
I too joined the forum recently.  It sounds like your doctors are doing the right thing.  All of the blood work is important to rule out MS mimics.  It is also possible to have more than one thing wrong! which just complicates matters.

You mentioned MRIs.  It is important for You to know what whether the MRI was done with a .7T MRI, 1.5T MRI or a 3T MRI and whether it was with contrast.  Read the Health Pages for more details on these tests and others.  The health page information has helped me tremenously as I move towards a dx.  

I too am in Limbo Land.  That is a phrase you will see here and I actually like the phrase.  It's catchy and easy to say and explain.  MS can take years to get a dx unlike other diseases.  For friends/family/colleagues it can be hard to explain problems that don't have a dx.  

I've also checked out books from my library 616.834 in the dewey decimal system.  Those books were what first made me suspect MS.  Lots of things I never thought to mention may actually indicate MS.  If you have a good library near you then have a look.  

I've also read the David Landers book "Fall Down Laughing" another book "Blinded Sided" and Terri Garr's book.  The first two were particulary helpful because they gave good details of their symptoms and the time it took them to get diagnosed.

Again welcome, there is a lot of good information here that help as you move to a dx, whatever the dx is.  Welcome