I don't know what to do and where to go... but here I am, your help/advice is appreciated!

[mmk232]

I am a 25 year old female. A little over a year ago I started having strange symptoms, including: numbness and tingling in my legs, mostly my right leg and it almost felt like it was asleep from my toes to by upper thigh/hip. In about 1-2 weeks the numbness and tingling moved up my right side of the body to my arm and shoulder. Within a week I felt like I had loss of control in my legs, I kind of shuffled and was careful climbing stairs, etc because I stumbled a few times and almost fell. In about two months I felt completely "off," I had just started a new job and I had problems concentrating, word associations and I would simply forget things if I didn't write detailed notes I would forget. I went and saw a Dr in late April '10, he ran several blood tests, the first two discoveries revealed I was vitamin D deffecient and I had an underactive thyroid. When I started taking supplements for both I noticed the concentration issues started clearing up in a month or so. However my legs still bothered me and sometimes felt like needles were pricking me in the right leg. In the summer I noticed I started having muscle spasms all over my body, feet, calves, thighs, buttox, and shoulders. Today, the leg symptoms have persisted and the last two weeks I noticed my sentences are scrambled. I didn't notice it until my coworkers pointed it out. For example I would mean to say, "lets drive the car" and "lets car the drive" instead... SOOO FRUSTRATING!! I was even speaking in front of a group and completely mixed up two different theories' and their titles and confused everyone beyond explanation. The first MRI of the brain came back ok (in May). I just got another of my back and I will find out the results next week. There has been discussion of a lumbar puncture as well. I have visited 3 doctors and 2 neurologists so far and all have voiced concern about MS but they want to eliminate other possibilites. They have also warned that it can be a long road to diagnosis with the symptoms I'm presenting. My question to you all, does it sound like I'm headed down the right road? I'm living in a new place, I don't know anyone and don't have anyone to talk to about this. Would it be too soon for me to find a MS specialist to possibly focus in on elimiating MS? Sometimes I feel the dr's I'm seeing now aren't very aggressive or on the "up and up." I have some medical history too, if you think it would be helpful to share that too I can surely do so. I'm so frustrated and I just want to feel better again. I'm often very tired and the uncomfortability often affects my normal lifestyle, I like to travel, run, etc but all those things seem to make the symptoms worse. I look forward to your comments and advice!

[wiggles94]

I had the opposite experience as Bob.  Was dx by a neuro and when I saw the MS specialist for 2nd opinion at a teaching hospital - they took forever to do anything - he wasn't as convinced as my neuro if I had MS - I was already on a disease modifying drug for MS - and he said I could stay on it or not - he didn't really know what to make of me.  Suggested some testing that was a long shot (which I haven't done yet) -  Just kind of shrugged his shoulders.

So I went back to my reg neuro - stayed on my meds and have follow ups with him soon.  His office is really quick to do everything.  So glad I stayed with them.

It's very common to see many docs in this process and can get very frustrating.  Hang in there and best of luck to you!

[COBOB]

As far as finding an MS Specialist, I kind of split the process when I was being diagnosed.  I was originally being seen by a Neurologist/Neuro-ophthalmologist in a private practice.  Thing were moving slow and he had to farm out every diagnostic test.  I called the local teaching hospital that is associated with the Rocky Mountain MS Center.  It really accelerated the process.  They could do most of the tests there.  They also have several doctors doing MS fellowships at the facility.

It worked out much better for me and seemed to go smoother than dealing with the private practice neurologist.  The insurance paperwork was also much easier.

Bob

[HoustonDogLove]

Welcome,
I am 26 and was diagnosed in December (you could say it was an early Christmas present) My diagnosis was fairly short compared to some other stories I've read.

It's a lot of waiting some times. Waiting to get a Dr. appt., Waiting for the lab work, waiting for the Dr. to give you the results, waiting to see what they're going to want to do next.
Like lulu said Thyroid and Vit. D are both things that could mimic MS or some of the symptoms, I was also tested for Sjogrens (I was convinced it was Sjorgrens until the bloodwork came back negative) and several other things but luckily I only did two rounds of blood work. One with my PCP before I thought I needed to see (or could get in with)a neuro, and one with the neuro.  I did an MRI  and then with the results of the MRI they wanted to do a lumbar puncture. I got results almost immediately after the LP, it wasn't definitive but I had high protein in my CSF and they wanted me to do IV solu-medrol the next day a few days to a week later they called me and wanted me to come in to discuss the results which was when I got my official.

The point is everyone here has probably ridden a long roller coaster before their official diagnosis. Mine took 4 months, Other peoples I've heard takes years. You are happy one minute because you don't have whatever they just tested for and on the other hand it's hard cause you still have no answer. Symptoms may come and go but don't give up.
If you have someone supportive you can talk to in person it helps, and we are always open and pretty supportive here.
I know your young and probably asking why me? why now? I was asking myself that too, You're not alone.

Hugs
Lora

[mookie255]

Some of those symptoms sound familiar. Maybe wait until you get the MRI results to seek out a specialist.  I have numbness, muscle weakness and balance issues. I just got diagnosed Friday. It's been two years  since my  first "episode".  If u have to get the  LP try to get it with fluoroscopy (sp). They use an xray and  it isn't that uncomfortable. Good luck, I hope everything improves soon.

[mmk232]

thanks Lulu! I looked at the information and have been doing some reading up on it lately. I guess the one thing I'm wondering is, if my Dr suspects MS, is it best to be referred to an MS specialist instead of a neurologist? The link you posted suggested going straight to an MS speicalist... I suppose this is a good question to have with my doc next time I'm in too. I will be checking in often, I'm learning a lot!

Thanks again :)

[Lulu54]

Hi and welcome.  Those scrambled brain/words symptomms can be so frustrating.  I'm sorry you are experiencing thato n top of the other physical problems.

Your doctor is so right in trying to tell you that diagnosis of MS can take a very long time.  This is a diagnosis first of elimination.  You have to eliminate every other possibility, and there are a whole host of mimics to go through, including Lupus, Lyme Disease and Sarcoidosis.  migraines and vascular disease fit in there too with the mimics.  

After that is done, you have to see if MS fits the picture and if the Mcdonald criteria for diagnosing MS can be met.  It is an incredibly complex disease to diagnose and I am sorry you are facing this question.

While you are wiating may I recommend that you take some time to learn more about MS?  We have great health pages here that offer lots of easy to understand answers about the prime MS questions.  You can find the index of these HPs at

http://www.medhelp.org/health_pages/Multiple-Sclerosis/MS-Information-and-Resources-Index/show/22?cid=36

Welcome again - I hope we will see you around.  This is a great place to wait while you are in limbo.

be well, Lulu