Feeling lost

[mathgirl24]

I have already had such long journey. Now I feel even more lost than before. I saw the MS specialist and she told me I'm a complicated case. She hasn't ruled out MS but wants to check for other causes because I don't present in a typical way for MS. Most of my symptoms only affect one side.

The tests she had me do came back normal. Her other suggestion is to just try a round of steroids to see how I respond. I'm not real fond of that idea. What do y'all think? Would you try that?

I had another neurologist order a repeat MRI since my last one was in November. That showed one lesion. The MS specialist said to wait till this November since things don't change that fast. But from what I have read lesions can pop up at anytime. Should I go ahead and repeat the MRI or wait till November? I'm getting really tired of waiting.

I've felt terrible this week. So tired and my left side feels weaker and more numb than usual. I was feeling really good and had lots of energy until about a week ago. And then it hit me like a ton of bricks. I feel better today but not 100%.

Any other advice would help as well. I'm 30 years old and have 3 kids. I need to be able to have enough energy to care for them!

[SNOOPY]

Hi mathgirl24.

I am sorry answers were not had with this appointment. Sometimes MS takes awhile to diagnose and sometimes what the person is experiencing turns out not to be MS.

Her other suggestion is to just try a round of steroids to see how I respond. I'm not real fond of that idea.

The plus side would be the steroids help and you feel better. The downside (IMO) is if the steroids help that doesn't mean the symptoms are due to MS and if they don't help it doesn't mean it's not MS.

Should I go ahead and repeat the MRI or wait till November? I'm getting really tired of waiting.

I know waiting is difficult and frustrating. Getting a MRI sooner may not offer anymore findings which will then add to your frustration. If you have MS the MRIs will indicate it at some point and to have a new MRI sooner might not be helpful.

In getting a diagnosis of just about anything can require patience, however, if you are like me I want answers now

[headrift]

The plus side would be the steroids help and you feel better. The downside (IMO) is if the steroids help that doesn't mean the symptoms are due to MS and if they don't help it doesn't mean it's not MS.

Agreed there. Steroids won't help find the problem, but it's sounding like you're more interested in a resolution than a diagnosis at this point.

As for the MRI, my last neuro wanted a new one every six months to see if anything had cropped up. Things can move fast.

[mathgirl24]

She is checking for sarcoidosis which would respond really well to steroids. So that could help her determine if that is it. The CT, however, did not indicated sarcoidosis.

I really want answers but I would like some relief of at least the fatigue when it is really bad.

The neurologist who ordered the MRI said they wanted to check at 6 months, then a year and if nothing changed stretch it out to a year after that.

[pennstater]

The neurologist who ordered the MRI said they wanted to check at 6 months, then a year and if nothing changed stretch it out to a year after that.

That is pretty standard unless something happens that appears maybe a neurological event.

I would try the steroids for relief of symptoms. Hope you feel better.

[WiltingRose]

Hi Mathgirl24,

I swear we are one and the same person! But, I only have two kiddos, lol. It's so frustrating isn't it? On one hand, we don't want any kind of a diagnosis and just want to be "normal". On the other hand we want justification of all our MANY issues. Like you, I was doing a little better and then we went to Lowes. I got really weak and lightheaded and had trouble walking. I believe the heat got to me. This week in PA it's going to be in the 90's for several days. I will be staying indoors in central air for all of it!! Sending prayers for you, and all like us who are on the Limbo rollercoaster.

[mathgirl24]

WiltingRose,

How have things been going for you? Have you made any progress towards getting answers.

I decided to go ahead with the MRI. I have it scheduled for Tuesday. I am still debating on trying the steroids.

[Poppy7402]

An alternative thought

A friend of mine went through 18 years of limbo before finally being diagnosed with something other than MS. It was inherited spastic hemiparesis. It only affects one side, so wonder whether this is something that your Neuro has considered?? My friend's Neuro had only seen one other case in his 20 years of practise.

[Myoak]

Diagnosing MS by Dr. Gavin Giovannoni

Most seeking diagnosis will find this video helpful, I believe.


https://www.youtube.com/watch?v=mbmK...ature=youtu.be

[mathgirl24]

The video was definitely helpful. Thanks!

I did get a repeat MRI scheduled. So we will see what that shows and go from there.

[WiltingRose]

mathgirl24,

I don't see a specialist until end of July, hopefully get some answers then. I did have my first PT for back pain and my reflexes were hyper (almost kicked her, lol). She doesn't think it's a herniated disk or compression,but more weak muscle issues. As long as I am indoors during this long heat wave I am doing Ok. It's just so surreal that we are going through this!!! What the heck is going on with our bodies??? I can't even lift my poor two year old. When is your MRI? I pray we get some answers soon. Hope you had a happy 4th of July!

[mathgirl24]

MRI is Sunday morning.

[WiltingRose]

Sending prayers you get answers finally. HUGS!!