Could it be MS? sorry long
 

Hi All,
New Here. I am waiting to see a neurologist but it could take up to a year one doc told me. I am a 47 year old female. Does this sound like MS?....Started waking with morning headaches, top right side only, for 2 months, then one morning I woke up to a leg attack, burning pain in my right thigh, front and side, felt like it was on fire, every nerve lit up like a Christmas tree, only lasted 10 seconds but from that day on more symptoms immediately followed in my upper right thigh and elsewhere on my right side.

Every day, continuously off and on throughout the day, my right thigh would burn for maybe 5 seconds, then go cold for another 5 seconds, then go numb for about 5-15 minutes...up to 50 times a day. I could tell it was nerve damage. I could sense the nerves under the skin of my thigh all day long. Whenever I would touch my thigh there was a weird nerve sensation and when I would tap my thigh I could feel nerves moving about under my skin and in my lower right calf as well...

Both my feet would hurt when first getting up from sitting or resting, figured it was heel spurs, I noticed other tingling and numb spots started happening continuously off and on all day, lasting for say 5 seconds at a time...my right lower arm, wrist and 2 end fingers, entire right side of my head, right cheek and right lip and cheek pain. Stinging eyes, sensitive to light and doc says its ocular roscea. Restless leg syndrome appeared in right thigh, worse lieing down, like spiders crawling under skin. Under my right lower eyelid started twitching like crazy day in day out for a month. All symptoms gradually slowly faded away over several months. Thought I might have shingles cause one tiny round pink spot on right thigh appeared but doctor said didn't think it was a chicken pox and instead thought I had meralgia parathesica and would set me up with a neurologist to get an MRI.

Almost 5 months have past and symptoms I have now are right cheek pain, both feet hurt due to heel spurs i assume.... tingling, pressure like, numb spots popping up daily, lasting only 5 seconds, 20-50 times a day. For about a week it was a big patch on lower right calf, then that went away and then it was my right lower arm and hand, now oddly last few days one small patch on my left thigh just above kneecap. I get feeling of goose bumps on right side of head alot. I have also noticed minor various cognitive problems, short term memory, getting words mixed up, recalling words, problem solving..I do wonder if this could be MS but no family history and am I older than expected for a first attack I assume. Any comments appreciated and thanks for reading this lengthy post. cheers RileyM

Wow, RileyM, I sure don't know what you might have. That's quite a list of crazy stuff going on with yer bod. But glad you found us and hope you can get some answers soon. :hug:

I was told that I had meralgia paresthetica in my right thigh and hip a few months before I had optic neuritis. (the ON was my first big clue I had MS)

The doctor told me after the ON, that I didnt have MS, and that it was migraines and that the numbness was probably just meralgia paresthetica...until I had burning in my legs a few months later, and got a new MRI (of my spine) that found a few lesions. That MRI got me my MS diagnosis.

Still, there are a ton of things that can cause your symptoms. You need to rule out all of those before a doctor can say you have MS...and MS is actually fairly difficult to diagnose because there are so many other things that can cause similar symptoms...and a lot of doctors are pretty quick at thinking that females coming in with complaints like ours are just "hysterical females" or that we're faking it.

I hope you've got a good doctor that's willing to listen to you and has an open mind.

I am thrilled that you have an appointment with an MS doctor. I hope they can find some answers for you. While you are probably scared, and worried, as we all were when chasing that diagnosis, I hope you are able to find ways to take a breath, and focus. it does feel like your body is betraying or attacking you, and that can be quite scary, but it sounds like you have a wait ahead of you. (why is it taking a year to get to see a specialist?)

That being said. To diagnose MS is a process of ruling out other things first. There are more than 100 diseases that can mimic or imitate MS. The MDs normally start with the easy ones to rule out, such as Vit D or B12 def. Lyme and Lupus markers can be ruled out on the same blood test. Sjoghrens takes more effort, but is also on the plate. Devics, and so forth will also be in the pile. Normally an MS center will ask for an MRI with contrast. It will cause any active lesions to light up. They will normally ask for a spinal tap to see if you have what are called Obands. dont panic if you dont. Many who have MS only show them during a flare up or a relapse. They will do neuro exams, like dragging things across your feet to check for babinski reflex issues, and so forth. It is not something that happens quickly, even if you got an appointment next week. While truly scary and emotional, many MDs dont view MS as an emergency type of disease unlike Guianne Barre, or Devics which can come on devestatingly quick and dramatic.

Do you have MS? its hard to tell even if you were sitting on an exam table right in front of us. There would be differing opinions, and I think all of us would advise to wait for the rounds of blood tests, and MRIs and spinal taps, but you have come to right place. Many of us here took years to get a diagnosis, and some here are still waiting for theirs. There are several really good places to be in a holding pattern, and this is one of them.

Please visit NMSS.org (national MS society) and view all the wonderful tools and advice they have there as well.

I have been in those shoes, and am so sorry for what you are going through. its scary, and sometimes it helps just to have folks to talk to. Pull up a chair, we are listening. :hug:

It is so hard to tell, Riley. Seeing an MS specialist Neuro, should help in getting you those answers.....in time...

I am so sorry for your pain and uncertainty, but I'm glad you are here to let us help you get through the process.

Welcome..:hug:

Thank-you to all who responded and encouraging words to not give up in finding a diagnosis. Some doctors could possibly think with so many symptoms, they are not real, all in my head or blame it on anxiety, but I know differently. I have decide to keep a log of my symptoms so when I see the neuroligist I will have a record of symptoms. I did this many years ago when I had pelvic pain. It took more than 5 years going back and forth to doctors, testing, and finally surgery was done after I suggested possibly endometriosis and then surgery finally confirmed endometriosis. I even wondered if pelvic pain was a normal thing, as I was so use to it. Keeping a daily log made me more determined to get a diagnosis as it was clearly evident something had to be wrong. I knew it was not in my head. Today I had sporactic tingling and numbness spots, my R arm and spot on R calf, and R face pain is worst ever (pain meds all day), will go back to doc and dentist if no better in a few days. thanks....RileyM


.

I hear you! And yet, a whole lot of sx is how it can be. Good advice from the others.

We know it's scary and frustrating. Wish we could change that. Best we can do is be here with you through it, answer any questions you have.

I started w/ migraines, vertigo, fatigue. But soon there was a whole flood of things - the hip pain, shock like being hit by lightning down my leg. A bunch of stuff. After a while most of it calmed down, but it took a while. Now there is always something, but only a couple somethings and not a dozen of them. ;)

Stress doesn't cause this, but it does make it flare. And limbo is stress.

Any MD who tells you its all in your head, or that you are playing games in order to gain attention, RUN AWAY FROM. Go seek another opinion.

What that tells you about that MD is that he isnt knowledgeable enough, nor does he care enough to help you search to find what the real answers are. Even if you are seeking attention, even if you are faking, even if you are just looking for pills, he should want to find out WHY?! Why would your life be so miserable that you would want to do this? Why would your thought process lead you to seek out a difficult path of medical care, instead of going home with a good bottle, or out on the town in a red dress to raise heck?! Clearly There are some folks that are seeking medical attention for the narcotics, but even then, he should be refering them to appropriate care, and not dismissing them as a waste of his time.

You will find this to be a common theme in MS patients on the road to diagnosis. The symptoms are vague. Your leg isnt bent at an odd angle and blue in color. it just aches, and has tingles. It clearly isnt broken, but something is making it tingle, so lets find out what that is, shall we? You dont have a constant bloody nose, and blood shot eyes, but you have a bad headache constantly, even if its not obvious why, lets find out why, shall we?

Please dont ever tolerate a dimissive MD. Speak up, and ask "If you dont know what it is, can you help me find an MD who is willing to help me investigate?" I found this question throws them. It shifts their gears, and makes um think a bit. This is a slippery disease, and isnt easily cornered and labled. hang in there. :hug: