Biting the bullet...

[nikkikl]

Hi everyone.

Having had a lot of symptoms over the past few years and being someone who buries their head in the sand and just pushes on through, I have decided after three weeks of annoying symptoms, that it is time I bite the bullet and get to the doctor. For years I have had, intermittently, the band of numbness around my trunk, poor balance, dizziness, leg pains and the weird sensation down my legs when I bend my head forward. I have tried so hard to find the reason myself. I was living in the UK up until 2 years ago and have seen two Neurologists. The first one (about 8 years ago) was an appallingly dismissive NHS doctor who did a battery of blood tests then decided I had Shingles (no rash, not feeling unwell) or Lupus. End of consultation. I assume it wasn't Lupus as I was never told it was. The second one was in 2009 (privately, not NHS) when I was tired of the numb band around my middle that had flared up again, dizzy, leg pain. He wasn't totally happy with my reflexes so I had a head and spine MRI and when I saw him again for the results he said I had a few spots of inflammation on my spinal cord and that it would come and go, nothing to be concerned about. He didn't actually say he was looking for MS but I realize now he probably was. The brain scan must have been clear. So, since then I have seen a chiropractor for the dizzy spells and leg pains when they flare, thinking, maybe mistakenly, that what he was doing was working as after a few visits I felt better.

So, over the last 3 weeks I have been slammed with just about everything. Overwhelming tiredness, the numb band around my middle, the leg pain, the weird sensation down my legs when I bend my head forward, major dizziness and poor balance, vision issues and eye pain (that one is new), mind going totally blank and some confusion, urgently and suddenly needing to pee (that one is new too), weak feeling in legs sometimes even though they aren't actually weak... the list goes on. The main symptoms do come in flare-ups and last for a few weeks then vanish. I didn't realize that until I sat and thought about it. Light bulb moment.

I've had anxiety and mild depression for years and that's been attributed to hormones (they are actually messed up) but now I wonder if there isn't more to that. The factor that made me really think about MS is because I was given Prozac by the Gynecologist as a stop gap for my hormonal mood swings until they are sorted out. They gave me unbelievable eye pain and then I read in the leaflet that they can cause eye pain in people with MS. Light bulb moment! Then followed 3 weeks of everything happening, which is starting to calm down now.

So, I am going to a new doctor next week, I have a list of symptoms that I have compared my issues with, everything that has happened, and I am actually going to say, please test me for MS. I avoid doctors like the plague, unless I can't avoid it anymore or I am marched there by my long suffering husband.

Does this sound like MS?

Sorry for the long post

Nikki

[SNOOPY]

Hello nikkikl and welcome to MSWorld.

The factor that made me really think about MS is because I was given Prozac by the Gynecologist as a stop gap for my hormonal mood swings until they are sorted out.

They gave me unbelievable eye pain and then I read in the leaflet that they can cause eye pain in people with MS.

Prozac is an old antidepressant and is used in MS to try and treat fatigue. Change in vision is listed as a side effect but side effects of medications are for anyone using it.

Prozac and MS:
http://www.nationalmssociety.org/abo...ine/index.aspx

Information about Prozac:
http://www.nlm.nih.gov/medlineplus/d...s/a689006.html

I used Prozac for many years off and on. I can't use it because it made me a zombie (no energy and tired).

the weird sensation down my legs when I bend my head forward,

This might be what is called LHermittes sign. There are no symptoms which are unique to MS.

I had a head and spine MRI and when I saw him again for the results he said I had a few spots of inflammation on my spinal cord and that it would come and go, nothing to be concerned about.

You may want to ask your Doctor for more clarity on the MRI findings.

MRI findings are abnormalities (something that shouldn't be there. There are many reasons a MRI showed abnormalities and if it was me I would certainly like a better answer than "nothing to about."

So, I am going to a new doctor next week, I have a list of symptoms that I have compared my issues with, everything that has happened, and I am actually going to say, please test me for MS.

Best wishes in your journey in trying to figure out what is causing your symptoms.

[nikkikl]

Thanks for the reply, Snoopy

I took myself off the Prozac as I couldn't stand the eye pain anymore and it didn't budge with painkillers. I'm back at the Gyne on Monday so I'll have a chat with him about it.

I might have to investigate whether it's possible to get the details from the second Neurologist although I can't remember his name. He gave me a CD of the scans but I threw it away because all I wanted to hear was that it was nothing to worry about, hence not questioning him any further. So I put the whole thing to the back of my head and just ignored it when the issues returned every now and then.

Unfortunately all my medical records are in the UK and now I'm living in the USA it's like I'm starting again. That could be a good thing, I guess.

[onlyairfare]

You might be able to get your records from the UK.

When I worked for an insurance company here in the US, we routinely got medical records from Europe for our insureds who had medical treatment over there while on vacation. As long as there was documentation of the treatment, the insurance company paid the bill.

With MS, it can be helpful to compare any old MRI scans to new ones to see if there are changes. I've moved around the US a lot, and the radiologists always like to have my CDs from previous scans to compare.

If you can't get the old CD, they will just work with what they have now, no problem.

[nikkikl]

Thanks for the reply onlyairfare.

I am inspired so I just emailed the hospital to see if I can get a copy of the MRI sent over. It would be nice to have a new doc look over it even if it's just to see what was cooking back then. Fingers crossed

Nikki

[22cyclist]

Nikki: The only thing I would add is not to come in to the neurologists office with an agenda. For example: Don't ask them to test you for MS. Just be sure to bring them a good list of your symptoms. Neurologists like dates and times, so as best you can bring a list of when the first episode started, what it entailed, how long it lasted (preferably >24 hours and continual numbness etc as this is considered a flare), what if anything made it better or worse, and if you were left with any residual effects from the flare. Mark down each episode with a round about date and year, so that they can count each one. At that time they will do a complete neurological exam. If you fail any part of it, you will most likely get another MRI to R/O MS and its mimics.

Like others have said, bring your other MRI, or have it sent there.

For some reason neurologists here when asked for you to be tested for MS, they think you are telling them how to do their jobs, and they don't take you as seriously. They think you have been consulting Dr. Google way to much, which you may be. Anyway, the neurologist will be able to check you out and hopefully get to the bottom of it.

Best of luck
Lisa
Moderation Team

[nikkikl]

Hi 22cyclist, thanks for the reply.

It's funny you should say that, as I have never been one to tell a doctor what I think may be wrong with me, firstly from embarrassment at looking on the internet, secondly out of respect and thirdly for fear of leading them to an easy conclusion.

I have totally weaned myself off of Dr Google now after diagnosing myself with every possible illness going, even though I rarely go to the doctor - I realized the self-torture was ridiculous. I should say at this point, that this is different... years of ignoring things/making every effort to heal myself is catching up with me now.

I have an appointment with a new Primary Care Doctor - my first since I moved here 2 years ago (avoidance) so I was thinking of being open about my own suspicions in the hope that he will refer me to a Neurologist and to save all the faffing around that comes along with what must be a difficult set of symptoms to diagnose.

Do you think I should tell the Doctor? I'm kind of in the dark over here a little.

Nikki

[misslux]

You should definitely tell your new PCP your symptoms, but not that you think you have MS as others mentioned.

I keep all my medical providers in the loop with what is going on with each one (PCP, neurologist, rehab physiatrist, spasticty physiatrist and even my chiropodist). I think it is important that they all know what each others' treatments and tests are.

Good luck!