Hi there. I'm new here. Honestly, I am waiting for a diagnosis still but thought I would come on this site and read some posts. I have extreme neuropathy that comes and goes throughout my body and random tingling and very low platelets. I just had an MRI and some other tests with the neurologist and am waiting on results. I recently saw a rheumatologist who is struggling to diagnose me as well because all my bloodwork is negative for lyme, diabetes, MS, arthritis, etc. My bones look normal. Anyway, my question is...... I was wondering how long it took you to get some answers and finally get a diagnosis. I have been in and out of the doctors for 2 months seeing all kinds of doctors and none of them can figure it out.

Kendra!
One big, warm, tight, hug, handshake and howdy, moose size, official type welcome to the site. This place is amazing!

I'm sorry for all the trouble you've been through, but as far as your question: It took only 3 months for me to be diagnosed with MS after my first symptoms showed. MRI, spinal tap, and little tests in the docs office. I was one of the lucky ones in that aspect. Some of our members have been
in 'Limbo' for years, with no concrete diagnosis.

I don't say this to scare you, just letting you know. And keep in mind;

You are not alone.
You are one of us.
And we are here to help.

Hi, Kendra, and welcome! It can unfortunately take some perserverance to get a dx of ANY kind. FYI, there is no blood test to rule in MS, only to rule other things out. Lyme can also be a little tricky because there can be both false positives AND false negatives. Hopefully your MRI will give the doctors a better clue. Hang in there!

Welcome. From the time I knew something was wrong until I got a DX was about 15 years. I was DX with fibro 10 years ago (after 5 years of Dr.'s telling me they couldn't find anything wrong with me) but I was sure there was something else going on and I didn't feel it was just fibro I had and 10 years after my fibro DX I finally got my DX of MCS.

Having neuropathy pain and wanting [VERY MUCH!] to be diagnosed goes with the territory. Thing is, that Neuropathies and other neurological and even other outside medical conditions overlap, seem similar, and mimic each other...so testing is a long and convoluted route.

First please, check out NeuroTalk's Peripheral Neuropathy forum:
http://neurotalk.psychcentral.com/forum20.html [Click on the blue and you'll be there!]

Next read the 'stickies': 'Important Links/Stickies', meaning that there is a lot of info [Info that's worth keeping] there that can help you...

This web site is useful about what the basic neuro diagnostic process is...what these docs look for at initial exams and why they test 'this' or 'that'.
http://www.neuroexam.com/content.php?p=2 A good deal of diagnosing is to 'eliminate' the things that can be tested for.
Next is a detail on diagnosing peripheral neuropathies:
http://www.aafp.org/afp/980215ap/poncelet.html
Finally, and I can't make it more clear? Along the way, get copies of all your test results! This can make it easier in the long run if you want to get a second or third opinion from other docs/specialists in the future.
A good PN resource to help you keep track of your tests [you mite not need all of them, but at least you will know where you stand in the 'testing-go-rounds] is www.lizajane.org [which is down rite now, but will be up soon I'm sure] and this site as well-tho a lot technical: http://neuromuscular.wustl.edu/lab/nvworkup.htm#lab

This all IS a lot to read and asorb, but it will help you track where you are in all the testing.

As for 'how long' it takes? For some folks years! For others just a few months. It varies from person-to-person just as does the pains.
It does sound as if your docs are trying very hard to do all the key tests as they get many other problems [such as Lyme's] crossed of the possible list.
I sure hope this helps! See you around soon! - j

Glad you've found us. There's so much great info and so many wonderful people here. Whether you get a quick Dx (which I wish for for you) or not, you've found a great support tool. I am still looking for a Dx after 7 months and there are those for whom that was just the beginning. Personally I've been to 10 Specialists and had a gazillion tests all of which just seem to confuse the doctors more. If for some reason you don't get answers right away and want to commisserate or vent, please look me up. I'd be glad to be there for you as others have been there for me.

I have had neuropathy...if that is tingling painful...and numbness stuff in my body 8 years....and no dx....

but many get dxed quickly....good luck and hugsssss, sarah

Hi Kendra,

Everyone has some great insight and I just wanted to add to it.

I have an autoimmune conditions from hashimotos thyroiditis as well as some other metabolic conditions like insulsin resistance and glucose intoolerance.

I am glad you are testing negative for several things. ON the diabetes front please make sure that your doc has done atleast a 2 hour glucoe and insulin test. My sugar and insulin always looked good fasting but it took a year before anyone tested it for a longer length and it showed insulsin resistance and glucose intolerance that continuted to some of my initial neuropathy symptoms.

Also be sure that you have your B12 tested as well as your viatmin D. We have some great posts on both subjects if you do a search up top.

I was low on B12 and still am low on Vit D, bt working on it. Improving those also improved my symptoms.

And your low platlet count has made me think of another possibility which is low iron and ferritin. There is some evidence that depleted iron can be a risk factor for neuropathy.

I have been low on and off for six months due to heavy periods and when I supplement (prescription supplemeents) it does also help any neuropathy type symptoms that I have.

So take it for what you will.

Good luck.

were can we find a good m.s.clinie for diagnosing m.s. in n.c. for my son?

hello and welcome to NeuroTalk Wilson9616

I just wanted to also let you know that we have a forum here just for Multiple Sclerosis so you may also want to post there, as more MS members are likely to see your post on that board
here is the link
http://neurotalk.psychcentral.com/forum17.html