Hi Everyone, my story...any info. or suggestions would be great!!

[VictoriaDouglas83]

Hello Everyone.
I am a 26 year old mother of two and wife.  In June of this year I went into a new doctor (we just moved and my old doctor closed down w/o us knowing), so I went in for extremely painful arm tingles, stiffness in wrists and ankles and other things.  My doctor said she thinks it may be fibro and started me on neurontin, which didn't do anything.  Yesterday I went back to her after weeks of research and because I was back in pain after about a month of being okay.  I have 2 people on my moms side with MS, one of whom passed away a few years ago, but they didn't say it was because of MS.  My doctor said she doesn't think it is fibro now and gave me a referral to a neurologist and wrote on the referral form something about MS symptoms.  I went in there thinking she wouldn't listen because I've been having these issues on and off since high school and every doctor brushed me off or looked at me like I was crazy.  She switched me to Cymbalta, but didn't give me anything for the pain.  Which I was kind of upset about because there are days where all I do is cry because of the pain in my arms or legs.  Anyways, I have a lot of symptoms of MS, I put them on my tracker on my profile.  Today my problems seem to be fatigue and extreme cloudiness.  I would just stare into space for minutes without even realizing.  And while trying to pick up my living room I was putting the garbage in the laundry basket and the laundry in the garbage for about 3-5 minutes until I realized what I was doing was wrong.  haha...  kind of funny and scary at the same time.
I'm just wondering how many people got diagnosed by going to their neurologist?  Or if they had to wait until they had MRI's and  LP?  I was also wondering how many of you started treatment and what kind before being diagnosed with MS?  
I am so happy to find this site and read some of your stories that sound so much like mine.
Any advice or suggestions would be wonderful!!  Thank you.
Victoria

[suzymsgirl]

Hi & Welcome to the group! :)

I have put the garbage in the bread box and a myriad of other tales could be told, to be certain.  Be kind to yourself and you will get through this.  Enjoy the welcoming support you will receive from this crowd.

Be well, and enjoy this discussions.

Sue

[flyfarfaraway]

Hi, Just to answer your question, (above)

I'm just in the process of them diagnosing me. I've had a brain MRI which said I have "12-15 lesions which meet the McDonald's Criteria for Multiple Sclerosis disseminated in space".

The Nerulogist wanted to do a lumbar puncture/sipnal tap but I'm declining that.

I am going for VEP studies to see about my visual pathways and also an MRI of the spinal cord (whish my fam doc would have done that when I had the brain done as it takes about 3 months to get an MRI appointment here)

No, they didn't explain ANYTHING or offer me ANYTHING! I asked about nutrition etc etc but the doctor just said, 'no not really anything you can do'. I really don't like him or want to see him anymore but now I have to wait until he's done his investiations before anybody else will take me on.

My pain went away for now, but I am still tired a lot and am trying to ignore a lot of 'little' things, like being very dizzy since last night and some tingling.

I am very glad you can find something to help you for right now. I know what you mean about finding some old pills just to take the edge off! When I had that pain/problem for 2 months It made me realize 100% why people kill themselves, I cannot imagine what it would be like if it was unenending. And I have a lot of respect for those enduring it.

Oh, I also had some blood tests to rule out things like lupus, rhematoid arthritis etc.

Hope things improve for you,

Take care

[Lulu54]

Hi Victoria, I'll add my welcomes - this really is a special community and I hope it fits your needs.

It is encouraging to read that your neuro scheduled another appt in August.  In neurologic time, that is pretty fast.  Time slooooows down when dealing with most of these docs and tests and symptoms.

Have a serious talk about pain management when you see this doc.  It sounds like you need some help while you are gettign through the dx phase.

No, the doctor will not start you on any of the DMDs (disease modifying drugs) for MS unless there is evidence that this is what you have.  Insurance won't allow it because it is too costly.  It makes no sense to give you a powerful drug if it is not going to cure your unknown problem.  

We have all done the garbage in the laundry basket, or its equivalent.  Yes, it is sadly funny.  I think in the healthy population it occurs, too.  Mainly the cause of that is distractions - whether our brain is thinking about something else or the dog is barking incessantly at the squirrel in the yard.  Laundry and garbage are both mundane tasks and IMHO its good to think of something else to pass that time! LOL

Welcome again - I hope to see you around.

feel better, Lulu

[VictoriaDouglas83]

Thank you.  I am trying not to lose hope.  I am just waiting for August to see what the neurologist says, hoping that he will prescribe a MRI or two.  Which I am certain he will, since my doctor said that she would, but our insurance likes to be stubborn when a referral for an MRI comes from a NP instead of a specialist.  So here's keeping my fingers crossed.  :)

I can't even imagine living with this pain and annoying sensations for years, I don't know how some of you can do it.  It does give me hope that I can though.  There has been many nights where I just want to chop my legs or my arms off.  And the jaw/face pain is horrible!!  I didn't put two and two together until now, but I remember several times going to the dentist saying that I think I have a cavity and them not finding anything.  I can't even function when that happens, and with 2 toddlers running around it's hard to sit there and not function.

Thank you all for your tips, stories and suggestions.  I'm feeling a little more comfortable knowing that I have a place to go and seek some understanding during this journey.  Good luck to everyone!!

[Csativa]

Hi Victoria and welcome.  As I tell everyone new (I've only been around since May) this is a great place to be.  I have learned quite a bit since joining the community and there is certainly no shortage of compassion and people willing to listen..

Anyway, I don't think I have much to offer at this point other than a couple of things.  One, the "journey" to MS, as you probably are aware of at this point, can be a very long and difficult one.  Mine began in 1978 with looking for a dx of MS.  It began all over again in May 2010 with a confirmation of a dx of MS.

Getting doctors to prescribe pain meds is, at least in my experience, one of the most difficult things I will ever do.  And I have degenerative disk disease.  I am not sure where I would begin, other than to say I don't know why so many don't listen.  I struggled for many years until I found dr.'s who would listen.  

The irony of it is that now, I have to refuse dr.'s giving more and more powerful painkillers.  I'm sorry - I guess this is the last thing you want to hear.  Try not to loose hope, however, and do try to be persistent.

Again, welcome and I hope to "see you around."

Frank

[VictoriaDouglas83]

FFFA,

Did they finally diagnose you with MS?  Or are they waiting for the other tests?  Did they discuss treatments?

Sorry to bombard you with questions.

My doctor started me on neurontin and cymbalta because she first thought it was fibro.  So she said "just try it and see if it works".  I was happy to take it actually, if it helps with the pain.  I've been in almost constant pain for 2 weeks.  Today was finally not that painful, just really tired.  I haven't taken anything that will help with the pain, besides some flexeril and norco I got for what the doctor thought was a pulled muscle in my back, about 6 months ago.  I had some of those left, and although it didn't take the pain away it took the edge off to where I could sleep a few hours at night.

Anyways, nice to meet you and I wish you the best of luck in your journey!

Victoria

[VictoriaDouglas83]

Thank you for the tips Sarah.  I set my font large on my computer, so I didn't think about how it would look to other people.  I will do that from now on.  :)

I have been dx with pinched nerves (without x-rays), carpal tunnel, sent to physical therapy, IBS, depression a few years ago and a few other things.  I am hoping that it won't take too long to dx me with something, even if it isn't MS, I just want to be dx with something and start a treatment that works for me.  But as I have read so much on here I am losing hope that this will be somewhat fast.

The pain in my arms is a itching, burny, needle pain.  I describe it as little bugs biting me all over my arms and legs.  Most of the time it is my left side of the body, but lately it has been both arms.  My legs I would describe it as the same thing or a restless leg thing.  I try to shake them off, but it is so annoying and painful I can't even sleep.  Yesterday my left wrist was so stiff I could barely move it and didn't use it for most of the day.  My ankles and hips also stiffen up to the point where it affects my walking.  I was tested for RA, since it runs in my family and it was negative.

Today I was so tired, groggy and just out of it all day long.  Not just out of it, but I felt like I wasn't even in my body.  Weird...

I think this tracker thing is great and I am going to bring it to the neurologist in August.

Thanks for the tips and advice Sarah!

Victoria

[flyfarfaraway]

Hi there, I just got here today too. I'm 34 and I feel I have actually been having MS-related problems since I was a probably a teenager. I have complained for years of fatigue and many other little things that got explained away by something else . . . until recently when I had a real 'attack' with severe pain in face and arm and left foot drag + balance issues + dizziness. That's when my doctor finally clued in and sent me first for a CT scan (which showed nothing) then for an MRI and tada! Brain lesions classic for MS. I'm now waiting to for a couple of other tests.

I said to him: Do you think this is why I'm so tired all the time then? "yes"

I also have several extended family members with MS.

In the past:
I had TMJ pain at 13 when my jaw would not open for days
Everyday after school napping, always felt like I couldn't get through the day
I DID have a little thyroid problem at one time which after that became the scapegoat for everything
Tremor (blamed on thyroid)
Many times pain in arms and hands (blamed on carpal tunnel or tendonitis or work-related)
Pain radiation down leg (blamed on pseudosciatica)
hmmmm, what else, . . . sent for sleep studies to see if I had sleep apnea . . . nope! Maybe upper airways resistence syndome--slept with the mask on ---nope!
migraines for 17 years


I can't even remember everything. But NOW with the MRI we can see I am NOT CRAZY!  And it is just not all in my mind.

My advice to you is to not give up. Ask to go for an MRI of your brain and spinal cord so they can look for lesions. With me who knows how long mine had been there. I wish they would have done that a long time ago and then I'd have something to compare that with now.

PS: I don't think you're doctor should have just started you on medication without doing some tests firsts. Have you had any blood tests or MRI's etc?

Welcome to you.

[Sparkysarah]

Hi Victoria and welcome to our fourm where you will find there is a wealth of experience and so many compassionate and understanding people.

First of all before I forget can you please break your writing up into short paragraphs in future as some people find it hard to read a block of writing and this may prevent them from being able to read your post and give you valuable help.

Can I also refer you to the health pages on the top right hand side where you will find a lot to read and particularly in response to the diagnostic stage. Generally the diagnosis (dx....see health pages for info about abbreviations used on this site) of MS takes time and is a matter of elimination of other illnesses and conditions. There are a number of tests that may or may not be performed including MRI scans, Visual Evoked Potential Tests and Lumbar Punctures but they are not always all done.

When you talked about the pain in your arms or legs are they on both sides or just one and I am wondering how you would describe the pain?  

Anyhow I am sure that others will chip in and say hello. Keep a history of all your symptoms to take to the neuro (again plenty of really helpful suggestions to be found on health pages!)

With best wishes

Sarah