Not quite there but getting close

[Brandyml]

Hello all, My name is Brandy, I'm 26 and I'm new to the MS world.
I had lost sensation in my right side on halloween which led to an MRI the beginning of November and now to possibly (most likely) a diagnosis of MS. I saw an MS specialist who reviewed my MRI and told me just by looking at the MRI alne she wouldn't diagnose me with MS (MRI showed 1 C6 lesion thats active and an older white matter lesion in my brain that is not active) but because of the loss of sensation lasting a week and a half, severe headaches, fatigue, problems with thinking, recent problems with balance and possibly vision disturbances she is led to believe that MS is the cause.

I have now done a full blood work up to rule out any other causes (lyne, lupus, diabetes, all came back normal). I had a spinal tap (this last friday) and trying to schedule the evoke potential (I think that is what it is called) for my eyes. It seems like the specialist I am seeing is really on top of this, I already had a three days of 1hr infusions of solu-medrol, which did not go well for me by the way but it was supposed to help with the headaches is what I was told. Now thats out there, I guess I'm just looking for more information/support about all these crazy things that are going on with me since my husband and family really don't know what to say when I talk about symptoms I'm going through. They are very supportive but just not sure what to say except, I'm sorry.

Anyways that's my long spiel .

Thanks

Brandy

[22cyclist]

Brandy: It can take a few days to weeks before you feel the full effects of the IVSM. So, don't get too stressed about still having the symptoms just yet. With the 2 lesions, they are probably just looking for time and space now, so watch your exacerbations. Anything that lasts over 24 hours and is continuous can be considered an exacerbation (after you are over this one of course). They have to be at least 1 month apart. Then you call and they may or may not do another MRI then, or they may give you more IVSM and then an MRI one month later. Just depends.

It does sound like you have a good neuro.

Good luck and hang in there.
Lisa

[suziq38]

I am sorry.
Your neurologist seems like she is doing everything that needs to be done.
Just keep a diary of symptoms to report to her when you see her.
I hope that you feel better soon.

[Brandyml]

Thanks

Thank you, those little tidbits really help!
After I started the IVSM my headache seemed to resolve within two days but then I started having other problems like my vision seemed slow; not adjusting when I moved my eyes from looking down to up, my balance was off (worse than before),
I then had body aches that started out in my neck and spread throughout my upper body and my headache came back different, but worse. It was like I had a few to many glasses of wine mixed with the flu.

My neuro said that I was going through withdrawals from the steroids! How was that even possible? I only had three infusions, but a total of 1000mg of steroids. Has anyone else felt worse after the IVSM then before?

Brandy

[FourPaws]

I just had my first round of IVSM in mid December and for about ten days after it (though not during) I felt very sick. I am cleared up now but my walking is still messed up.

[Cat Mom]

Hi Brandy, yes, the IVSM does make most of us feel horrible. I have been fortunate enough to have not needed them since Jan /09 but had lots between Sept /05 and then.

I think when your neuro referred to "withdrawal" from them, it's a really high dose that's sent directly into your blood. 1,000 mg per day, for 3-5 days, is quite normal, but dangerously high. Lots of us get an "oral taper", a gradually decreasing dose of prednisone pills to help our bodies adjust, but lots of us don't as well. I think it simply depends on what the doc thinks is best.

Don't worry, the nasty effects from the steroids does dissipate. I hope soon! In the meantime, there's plenty of wisdom and compassion here so don't be shy to ask questions or blow off some steam if you need to.
Jen

[Brandyml]

Thanks . I told my neuro that I usually end up being in that one percent of things that don't happen to people. She talked about putting me back on the steroids and tapper me off. At that point I think I was through the worse of it.

Now my vision has returned to normal, balance is better, the cog fog is almost gone, not sure if that one will resolve completely. The one thing that stays with me is this headache, I just can't shake it. Nothing really helps, sitting or laying down makes it worse but not even pain meds help.

I have tried acupuncture, diet changes, I don't drink caffeine, and the chiropractor knows my voice when I call to make another appointment. Anymore I think the chiropractor is doing more harm than good; the last two times I went my headache was worse the next day and a half.

I don't know if it gets worse because of inflammation from being adjusted and that I have a lesion in my neck that was already inflamed or what.

All I know is that I really don't know how much longer I can take these headaches. There seems to be no real rhyme or reason to them except when sitting usually my posture can cause the headaches.

Anyone else have these types of headaches?