Pain in Legs

[Llexi]

Hello All,

It has been a little bit since I first posted a question. I was recently diagnose in October with MS but not clinically diagnosed. Did not know there were two different diagnosis processes. Any who, I am at the Cleveland Clinic Mellen Center for MS. They were currently waiting to see where my MS was going. I have had 3 MRI's since October (progressively showing more active lesions each time but showing stability.. Confusing but I'll take the Dr's word for it). The past week or two I have had very extremely weakness in my hands to the point I could hold my medicines, open the medicines, open any bottles, and hold things. My left hand being worse than my right. On top of this I had numbness in my hand for 4 days straight with varying degrees of numbness. i also have had a continuous headache. I am currently on nuerontin at 900mg a day (they want me to increase to 1200 to see if it helps my headaches. Lastly my vertigo has came back with a vengeance. I called me doctor and we went over my symptoms. She believes that I am in a relapse and I am scheduled to go in tomorrow to speak about going on Medications.

Since Monday I have a new symptom and I am not sure if it is MS related or from something else. I have been having severe pain and restless legs. Nothing helps except my boyfriend's left over vicodin which just puts me to sleep so I cannot feel the pain. Is this something that is MS related? I plan on bringing it up with my doctor tomorrow when I see her. Thank you!

[kwarendorf]

Welcome to the club, unfortunately :-) at least now you can start to implement a game plan to fight back. I'm not really sure I understand waiting until May to start a DMD though. Seeing the neuro opthamologist is a good idea.  At this stage you want to establish as broad a baseline as you can.

Kyle

[Llexi]

Thank you for taking the time to answer my question. I had brought it up to my Dr on Friday and she said to up my Neurontin from 1200 to 1500 a day to help control the spasms/pain and headaches. Still having some numbness and now I am in referral to see a neuro ophthalmologist because of my optic neuritis (new symptom one since last week). They can't do the solumedrol because I get severe reactions to it and they are trying not to do it unless absolutely necessary.

I hope things recover quickly for you too! IIf you don't mind me asking are you on any type of medication? You can PM me if you'd like. I'm trying to get info from people taking the medicines as well as reading up on them. I had Copaxone in mind and when I went in friday my dr said thats what she was thinking as well. Its a big decision and I have till May to think about it,

Thank you again for the care and concern

[LisaJF]

Wow hon...You're going through a lot.  As Sarah states...no one should take other people's medications even though it is obviously for pain and you know the person where it's coming from.

I hope you brought this up with your Neurologist and he/she prescribed you something for the pain if it hasn't gone away.

I can relate to the paresthesias extending beyond 24 hours.  I've had bilateral leg paresthesias for 21 days now.  It's not painful, but its annoying and its 24/7.  On and off I've been having days of weakness in my legs where I can barely stand to hold my own weight.  (hugs to you and hope a rapid recovery).

Let us know how you're feeling!  I pray that you'll be better by the time you read this!

Lisa

[Llexi]

Well they finally officially diagnosed me with Relapsing Remitting MS. Feels like a weight is off now that its been truly diagnosed. They said they are going to wait until my next MRI in May to start medication. I do have to see a neuro opthamologist because they believe I am having optic neuritus. We shall see. Thank you for the support!

[Llexi]

Thank you Kyle,


        I started off in the ENT's office for ear infections, vertigo, and balance issues and he ordered an MRI/CT Scan... which then landed me in the neuro-oncology unit. It all started with 1 lesions. The second MRI in October had multiple lesions (so many the doctor told me he wasn't even going to count them) to the last one in december having the same active lesions with more new active lesions. Thus the diagnosis but no clinical.. I have a feeling tomorrow they will finally clinically diagnose me.

I'm very glad they were able to diagnose you and get you started on something so quickly! I'm researching some of the medications they have available right now. I would prefer an injection rather than an everyday medication since I'm on enough of those already and pills are difficult for me to swallow. We shall see.

I definitely will keep you and Sarah updated. I hope this is the end of my road on finally being diagnosed and starting the road to keeping my MS under control or at least as much as possible!

[SarahL2491]

I agree with kyle, totally, and have written you a PM (check your inbox) about my history and search for my diagnosis.

[kwarendorf]

While it's true that many folks go through long, frustrating diagnostic processes. But that's not a requirement :-) I went from relapse onset to diagnosis and treatment plan in 4 months.

If your neuro told you in October that you had MS and you have had 3 subsequent MRI's, all showing new lesions, I can't figure out why she is not starting a DMD program for you.

Kyle

[Llexi]

The information you both have provided has been helpful. From what I understand in diagnosing MS is that it isn't a one and done thing... That most people have at least a year of symptoms and MRI's as well as other testing. They want to rule out everything else before coming to the diagnosis of MS. I've been tested for Lyme, Lupus, Anemia, Nuerosyphilis, and every vitamin deficiency possible. I have been on B12 injections, B complex, and Vitamin D  for months now. I guess they were waiting for a relapse in order to clinically diagnose me and put me on a medication. My doctor's reasoning is that they want to be safe when putting me on a medication before ruling out everything else. This most recent relapse I guess was the push towards the diagnosis.

@ SarahL2491 I do agree and never take anyone else's medication but I was to the point where I couldn't even come to work or be productive in anyway and it was effecting me actually sleeping. I am going to ask what else I can do tomorrow when I see my doctor. I have also tried soft warm blankets around my legs to help calm the spasms/pain but my body is definitely working against me right now.

Thank you both!

[SarahL2491]

I agree with Kyle but stay off someone else's medication.  If your doctor has not prescribed it, you don't know how it will affect your MS.  

As Kyle says, there are medications available for MS, I take Tysabri which is a monthly infusion.  There are also medications for spasms, which is what your leg sounds like.  But I too am confused that you have MS but no clinical diagnosis.  You need to get proactive here and ask your doctors to "get off the fence" and give you a diagnosis.

Welcome to our corner and keep us posted.
Sarah

[kwarendorf]

Hi Llexi -

It sure does sound like you are in a relapse. I'm not sure what docs mean when they "you have MS, but no clinical diagnosis." It's the second time I've read it this morning.

You should discuss all you current symptoms with your doc. There are 2 treatment paths that you should discuss as well.

The first is dealing with your current relapse. High dose steroids, given via an intravenous infusion (Intravenous SoluMedrol - IVSM), can help reduce the current inflammation. Reducing the inflammation may help ease your current symptoms. IVSM is something you should discuss with your doctor.

The second component of your medication plan is finding a disease modifying drug (DMD). There are many available including Copaxone, Rebif, Avonex, Betaseron and Tecifdera. Your doc can help you pick the one that will work best for you.

Let us know how things go tomorrow.

Kyle