[Freesia38]

Hi everyone,

I'm new here, I have no dx, but I'm finding myself in tears and nodding with recognition to some your daily experiences, symtoms and feelings.


Only had symptoms for 4 months (with a 1 month 'break'). Left arm and leg heavy/numb-ish. Can't walk far anymore. Pins & needles in hands and one foot. Ridiculous fatigue. Electrical 'pings' i call them - in my legs and behind my ear (?!). Immense pain in my leg for 20 seconds then it goes. Burning & buzzing. Very vague when i'm tired - that's embarrassing. Can't have baths anymore, can't get too hot in bed or I can't feel my hand at all.
It's emabarrassing at school pick-up time and people i sort-of-know ask me why am i limping. I feel dumb saying, "i don't know yet".... and it's been 4 months!

But all tests have been clear. (MRI. VER, bloods.)

My sister and aunt have MS. (some tell me it can mean I have a higher chance of having MS, some tell me it doesn't).

I am really scared. I remain positive though. I'm constantly searching for 'what else could this be?". I know MS can mimic 100 other conditions.

But when my neuro has done all she can and tells me to come back in November for my next MRI, I'm really scared! Why doesn't she look further into what else it could be?? She says, "MS is highly unlikely". so why stop looking?

I've been trying Chinese medicine and kinesiology which have their own theories of the 'emotions' behind the symptoms such as pins and needles and numbness.
They say it can be built up stress. (the last 4.5 years for me have entailed childbirth, then a yukky divorce, court stuff, and my Mum' death).

I guess after that long vent and ramble my question is, do you guys question the emotional stuff; the 'why', the 'what's behind this' from a deeper emotional perspective.

Obviosly I'm struggling with accepting there is a small chance i could have MS. But I think that's normal!

I have the book, "Why Not Me? - my journey with MS" on my bedside table but haven't read it yet. My sister says this book is inspiring.

I would like to hear other's thoughts if you'd be happy to share.

Michelle

[SallyC]

Welcome, Michelle. I'm so glad you are here..

I find it so very strange that your Neuro says that "MS is unlikely", in your case. Your Sister and an Aunt have MS and you have a lot of the MS symptoms.. I'd say your Neuro is in deniel..

It is not unusual for a clear MRI, in the beginning. Many here have had the same experience and yet subsiquently have been DXed with MS.

Is your Neuro a MS specialist? Ask your Neuro or PCP to, at least, treat your symptoms..(fatigue, burning pain, tingling...etc). There are some effective meds that may help you cope, while you are waiting for that next MRI.

Emotional fatigue is also a symptom of MS and can also be treated.

Stay with us and enjoy the support you will receive here. Don't let us oldsters forget what it's like to be a newby.

[Kitty]

There are many here who had to wait quite a while for their dx. I agree with Sally in that your Neuro should consider MS since two close relatives have it.

I had symptoms for years but never paid much attention to them since they were so mild. It was probably my third episode that forced me to see a doctor to find out what was wrong. I had double vision and couldn't ignore that! I had numbness in both legs prior to that (a couple of years prior) but wrote it off as a pinched nerve after it resolved itself after a couple of months.

If your Neuro isn't an MS specialist it might be a good idea to find one - or go to your Aunt's or sister's if they're close enough. The sooner you have a dx the sooner you can begin treating the disease.

There's lots of us here to help you through the dx process. Sometimes it's lengthy....sometimes it's quick.

[braingonebad]

Yes, do not be afraid to keep trying different doctors if you need to. Keep looking till you feel you are being taken seriously, tested properly, and having your symptoms addressed as best you can.

There is often no way to rush a dx - ms or otherwise - but at least the doc can do all things possible to take care of you and keep the process rolling along.

[Freesia38]

Thanks for your posts.

My neuro is actually one of the best MS specialists - uh oh!
I asked my Doctor for a 2nd opinion - (in Aust we say 'GP' (General Practitioner. Is that the same as a 'PCP'?) and she wouldn't give me one, saying my neuro was a good one!!!

I don't really have a long-term GP that knows me really well. But it might be time to find another one!

I even called the MS Society and they told me my neuro was top on their list.

During my first exam she said, "yes I suspect demyelination/MS", then 2 days later the MRI was clear. During the 2nd exam 8 weeks later, she says "highly unlikely".
She has at least put me onto oral steroids. But they only take away the pins and needles, and increase the tiredness.

Anyway, I see her on Monday (2 more sleeps!) So I'll be giving her the Spanish Inquisition!

It's not really a fun merry-go-round to be on.

[Koala77]

Welcome to NeuroTalk Freesia, but sorry for the reason that brought you to us.

I see you live in Melbourne and I do know that there are some excellent neuros there. If you're lucky enough to have one that's an MS specialist, I'd recommend staying with them until all your tests are completed. That way you can at least feel confident that they'll have ordered the most important ones, and that they know what to look for in the results. I'm afraid there are still some around that I don't, and I personally have seen a few of them over the years.

[Dejibo]

Going to an MS center was what helped me separate the MS from the other sx. Several MDs had labled me "viral" or "migraines" or "anxious" and when the MS center got a hold of me they said "whoa! thats MS!" it was great to have so much support and some real answers.

If you feel your MD is being dismissive or just not hearing what you are saying, or feel he doesnt have a handle on your case, move along. MDs get dismissed everyday. They dont take it personally, and if you have a difficult case, most are relieved to have another person taking charge of your care.

[FinLady]

Hi there! Sorry for the reason, but glad you found us.

Totally understand what you're feeling. I have MS coming from both sides of my family (which I've heard is rare). My paternal grandmother had it and my mother had it. From everything I've read thus far, there is only a slight increase of probability if there is another family member with it.

I agree with making sure all the testing gets done. Even with typical MS stuff on my MRI's, my neuro did the process of elimination prior to giving me my diagnosis. Took a year and a half to get it, and that was mainly because I had back to back changes on my scans and test results didn't fit anything else. As to the MRI, was it the brain only or have you had one of the spine/neck as well? May be worth mentioning.

I agree with at least getting some relief for your symptoms. Talk to your doc about that.

[msarkie]

Did you have the lumbar puncture to check for O-bands? That was what finally got me dxd. My MRIs were "inconclusive", and everything else was normal.

[Freesia38]

Finlady and msarkie -

The MRI was brain and C-spine.
Should they have done the rest of my spine?

I haven't had an LP. The neuro said she wouldn't order such an invasive test as yet.
I really don't want a LP. I'm terrified of it. I've heard of terrible headaches and pain for days aterwards?