In Limbo and Looking For Comfort

[JaneK1975]

I'm 36. Several months ago I had pain and numbness in my left arm. After seeing several specialists, I was referred to a neurologist who had an MRI ordered. He saw lesions, and told me it might be MS (surprise!) He asked me to do a visual evoked potential test, so I scheduled one. In the meanwhile, my hand went back to normal (well, 99% normal), but both my feet have gone numb. The visual evoked potential results came back normal, so my neuro has ordered a spinal tap for a week and a half from now. I am so sick of waiting to find out what is going on.

I'm kind of freaking out right now about not being able to feel my feet. I feel awkward when I walk, and I can't really run. I've been wavering between positive and negative feelings ever since my neuro first said "MS". At times, I feel like this is no big deal and it won't change me and I can handle it. At others, I just break down crying for fear of... I don't even know what.

Right now, I just want my feet back. God, I want my feet back so bad. If anyone is out there to tell me that it's going to get better, please do. I know I will be okay, but I'm just really scared right now.

[JaneK1975]

An update: I saw my neuro yesterday and he recommended Copaxone. I asked about "the pill" (Gilenya), and he said that the possible risks make Gilenya appropriate for people with more advanced disease.

I told him I was going to go home and scour Google scholar before I make a final decision, and he said that was a great idea. It seems that Copaxone is the only DMD that doesn't tend to cause flu-like symptoms as a side effect, and I like that. The injection idea is creeping me out, but I'm a pretty hardcore chick, so I figure I can get past it. I hope I'll still feel hot in my bikini next summer. Cross your fingers for me!

If anyone has any advice, or tips on where to direct my research before I make a final decision, let me know. Thank you!!!

[TLC_31]

For me, the actual diagnosis was a little bit of a relief. And the fears I had at the time, almost nine years ago, have not come to pass. They don’t have to for you either.

You ask about moving forward with treatment. I believe in attacking the disease aggressively, which can be a pain, sometimes literally. Study up on your disease-modifying drugs (DMDs). There’s Copaxone, Betaseron (aka Extavia), Rebif, and Avonex, the latter three of which are interferons. All seem to have similar efficacy rates. I believe they all have financial assistance programs if you’re uninsured or underinsured. All have side effects of some sort, but of different intensity to different people. It’s a bit of a crapshoot, but you can switch after several months or years (even days if the side effects are that oppressive).

Some (but not me or my neurologist) will advocate LDN, which is not specifically approved for MS. Some simply have dietary changes emphasizing certain vitamins. The latter (and sometimes the former), you can combine with a DMD.

Gilenya is fairly new on the market and worth a look. Tysabri often receives good reviews. The side effects of those are riskier, however, and so they’re not often a first choice to attack the disease. You can always switch to one of those down the road.

[JaneK1975]

Thank you all for your words of kindness and concern. I had an LP last week and just received the call from my neuro that it did "show evidence of the multiple sclerosis condition". I have an appointment this Friday to talk about treatment options.

I'm finding that I'm not very stressed out about the diagnosis now that it's real. Partly because I talked to my Mom over Christmas and she didn't freak out (my biggest fear was scaring her). Now I feel like I'm just going to keep living my life the way I have, do what the doctors recommend, and take my symptoms as they come.

I suppose I will need to make some decisions regarding treatment soon. Does anyone have any advice on how to move forward with that?

@MDeStef84: How did your appointment go, and were you able to choose a treatment option that you feel happy with? I am wishing you the best! Hugs!

[MDeStef84]

Jane, I know how you feel. Im a 27yr old single mother of 3 children all under the age of 6. and have been experiencing a wealth of symptoms for over a year now. I recently had a LP. It showed the bands, my doctor wants me to come in next week to talk about the results and where we go from here. Im hoping for some answers next week. I know it is so hard, because there is a huge question mark in the back of your mind throughout the whole ordeal. Hopefully, once you get the LP done, it can offer you some relief. My only advice for you, is to live life day by day, if you over analyze or continually stress yourself, you're only going to be miserable (been there, done that! lol). I hope and pray that you get the feeling back in your feet, and hope that you can finally get some answers!

[JaneK1975]

Thank you, both.

Dagun, your English is beautiful and works just fine for comforting, which is exactly what I need right now.

I can be patient and continue with my normal life. I just keep having these brief episodes of crying and fear. 99 percent of the time I feel positive and strong. It's only that 1% that brought me here.

I've heard stories from others waiting for years and having to fight for MRIs. My heart goes out to those folks.

[Dagun]

Hi you and welcome to these forums. Sad to hear what you are going through, this can all be frightening at times. I am also in Limbo and not liking it. It can sometimes take time to figure things like these out, so be prepared that you might have to be very patience. And I am sure that you can handle it, what ever it is just try to think positive. There are so many nice peoble here, so stay around and let us know how this goes. Good luck. (Sorry for my English)
My best,
Dagun

[LisaJF]

First I want to welcome you to the forums where you will find a plethora of information on our health pages:

http://www.medhelp.org/health_pages/Multiple-Sclerosis/list?cid=36&container_name=Multiple-Sclerosis

Here you will find a lot of answers to common questions as well as confirmation of what you feel that you may be going through.

Although there are many diseases that can mimic MS (as you very well know by now) and I'm sorry to say, many are in your position where they are waiting to find out what is going on.  Unfortunately, sometimes things are not always black and white.  Sometimes "time" is needed to reveal the culprit.  Some people were diagnosed quickly with MS, some waited years, decades and even more so.  I'm not saying that will be you, but when you have neurological symptoms, T2 hyperintensity lesions (depending on where they are), along with negative evoke potentials, or negative OCT (neuro-opth) examination to see if the optic disc is thinning, and negative lumbar puncture (don't get discouraged if yours is -- 10% of people with MS have negative lumbar punctures) -- please don't expect answers immediately or a diagnosis immediately.  

Most times people like us will "wait" and will get "sick and tired" of no answers or doctors vacillating between diagnoses.  

Hang in there kiddo, its a rough road and I can empathize with you.

No one can tell you if your feet will return to the  normal motor and/or sensory to 100%.  I don't even think doctors who sit 5 feet away from you can tell you that.  I wish I could tell you that, but I'd be a fool to do so.

Being scared is normal as you know and what is great about these forums is that you can vent all you like about what you're scared about, what tests you're going through, the results negative or positive and just plain old support from those who  have "been there and done that".

Keep us informed how your lumbar puncture goes.

I wish you well and good luck

Lisa