My Story, had issues with my right hand and fingers going numb had carpal tunnel surgery, a day after surgery I experienced low grade fever, each day a new symptom would show itself, was seeing an ENT for reflux went to him and he thought I had Labrinthitis, inner ear infection, after that burning face(left side only, extreme fatigue, weight loss, dizziness, ENT referred me to neurologist,one lesion on btain, lumber came back ok, had mri he thought I might have ADEM,was sent to hospital for iv steriods for 5 days after stay did taper on steriods felt awful, arms going numb, feet and legs going numb at times. All symptoms are rare now except fatigue and burning face. Was prescribed rebif but have not taken.

I know how scary this can all be. You are in a good place with many experienced people to try to help ease your way into all of this!

Please read WenMd: http://www.webmd.com/search/search_results/default.aspx?query=ms&sourceType=undefined

I have had facial problems in the past, that have gone away, as well as many symptoms that have not gone away. Everyone's MS is going to be different, and determining a type may be a clinical dx, based on your current and continued symptoms.

It does seem that getting into a good neuro, especially an MS specialist takes an initial wait time. If you think you need help before then, go to an ER. I am on my 4th neuro so don't just accept one with no compassion, if you do not want to. You have yo have faith in your doc, they are suppose to be the ones that know what they are talking about LOL.

If you have any questions, do not hesitate to message me or post them here. Be Well!
Si

Welcome Allie, I know this is a very scary time for you. reading your post took me right back to my first neuros appt. I was very frustrated that he wasn't giving me more info. the truth is all they can do is start you on treatment, treat the symptoms, and wait and see....
I know everyone has their own experience but mine is the longer my neuro and I had to build a relationship the better I felt.... from what I have been told they cant really tell if you are sp ms until after five years of dx.
just hang in there and I'm happy you found us...
april

I have always heard that the first year is one of the hardest and I believe it. I had a problem with my eye and no other symptoms it turned out to be optic neuritis. After the MRIs and spinal tap I was diagnosed in March of 2008. I then started to have a host of other symptoms numbness on my right or left side, painful charlie horses in my legs, bladder issues, constipation the works. I understand how you feel I could not believe that I could go from no symptoms to all these symptoms literally overnight.

I had a 5-day round of steroids in March 2008 and 3 day round in April 2008. I was on Rebif but it did not work for me and have since had my medicine switched 3 times due to various allergic reactions and when I was going through a period of changing medicines I had another relapse in October and another 3 day round of the steroids.

Like you I just want to get stable and I am still optimistic that I will find the right combination of medicine, supplements, and lifestyle changes to make that happen. I have had periods of stability and I have a good support system of friends and family. It has become mind over matter for me. Even though I wanted to break down or give up I just keep pushing through (although a good cry helps every now and then :-) I was off work in March and April but other than that I have not let these symptoms stop me from living my normal life. I just recognize them and make the adjustments so I can go on.

Two helpful sites I have found in reading about MS are:

http://www.thjuland.net/0site.html
http://www.mult-sclerosis.org/

They both list types of MS. The first site has hyperlinks to every definition you need when reading about MS...VERY HELPFUL!!!!

It is as tdstev1992 has written. The first year is always the worst before MS gets under control & stabilized. Many people will have to try different meds b/4 they find the one that works for them. I was lucky, I first used betaseron and it settled things down for me right away. The meds don't stop symptoms, there currently is no cure for MS. The meds slow the diseases to prevent it from being as bad as it could be in the future. Betaseron slows it by 30%. The meds do not repair any damage. Your body does the repairs. Betaseron slows the MS, your body heals it anywhere from 0 to 100%. So its a race between MS damaging & your body healing and you need some patience to see the race resolves itself.....it's a flaky disease. there are reports of additional healing years after the symptom occured? No omne understands why it can happen like that. Read those 2 websites, to get more understanding of the un-understandable.

When I was diagnosed the ER doc thought it was a stroke too. His exact words to me were..."This is either a stroke or MS and it will be much better for you if it is MS"

5 years later I am understanding why he said that. We are both very lucky it is MS and not a stroke. As you read about it, you will begin to understand how lucky we are that it was not a stroke. Of course we could have been a little luckier and it would not have been MS either. It could have just been a nightmare & we could have woken up without anything. That would have been nicer.

I was first told I might have MS when I had ON(optic neuritis) 19 years before. It cleared up & I forgot about it. Then 19 years later I was in an ER with balance trouble, trouble talking & the right side of my body would not work right. The I remebered...oh yah that doc told me 19 years ago that this might be MS looks like he was right.

So I had the 19 years of time where I should have known before it blew up on me like this....You will read about people having a relapse but I really do not think it is "a relapse" I think in those 19 years, that I didn't know I had MS & was untreated, I had "Periods of MS instability" where a few strange things would happen then nothing for a few years.

The year I was diagnosed I had "4 relapses" in a 13 month peroid. I believe it was "1 Peroid of MS Instability" with 4 relapses in it.

Right now there is so much for you to read & learn but the bottom line is you are only doing 1 thing right now. Determining which MS med will get your MS undercontrol and stable. That takes time too.

As an aside. Ms is a disease of nerves. So Rehabilitation is not like muscle rehabilitation. They are different. Nerves get fatigued. A PT gave a speech about MS rehabilitation which impressed me so much. He said MS is a disease of the nerves like polio is also & they had learned so much about nerve rehabilitation from Polio victims.

Some stubborn Polio patients were determined to walk again. So the pushed & pushed themselves and their nerves responded like a blown fuse, their nerves just blew and they lost the possibility of walking again. Those that paced themselves slowly did return to walking. So the Physical Therapist said treat MS rehabilitation like a circuit wit a fuse on it, that can blow.

Nerve Rehabilitiation is easy repetitive actions, doing it over & over but not tiring yourself. You will read the words "Pacing oneself" often in an MS message board. That is why we all focus on Pacing ourselves an you will too and it will become normal.

The first year is the most difficult though. The second year is when a person comes to terms with it...it takes a whole year to get to that point. The third year is when a person learns how to pace & accomadate for their MS. It takes about 5 years before the true nature of a person's MS is known. MS types are determined by the history of their MS, how their MS has behaved over time. Your doc may not be telling you much right now, because he does not know know that much about your particular MS right now. He may need some more time to see how your MS responds to meds ect...

My doc told me after I was diagnosed and when he told me to start betaseron and was explaining what MS was....they, the doc's really don't tell a person much. They relie on books and message boards for a person to learn what MS is. It's a very complex disease.

My doc explained it to me like this. I have posted on MS message boards and have had people reply that they wished their doc had explained it to them as simply. A person has to further clarify MS with books & stuff though.

He told me I had MS. I no longer have a "Normal". My "Normal" is now a "Baseline". I would have a series of "Baselines" and each succeeding Baseline would be less than the previous Baseline.

Oh yes. Besides books, websites & MS Messageboards there are also Support groups run through the National Multiple Sclerosis Society. These are very important for contacting others with MS.

In my state they also send a "Welcome to MS" kit that has a ton of brochures describing what MS is and they have a "MS Mentoring Program", where an older member calls a newer member frequently to ask how they are doing and if they have any questions. You can also network to find out how different doc's in your area are.

If you haven't been to the nmss.org site yet, I would recommended you spend some time there. They have an easy to remember phone number to call too....1-800-FIGHT MS.

A link to their newly diagnosed webpage, which does have a way to search for the NMS groups in your state...

http://www.nationalmssociety.org/living-with-multiple-sclerosis/newly-diagnosed/index.aspx

Oh yes. It is no longer true that you will have to give yourself shots for the rest of your life. You will have to take some sort of medication for the rest of your life for your MS. Treatments are advancing so quickly that they may find a way to stop it in your lifetime. So perhaps you will not need to take medication for the rest of your life.

Oral meds are in late phase testing and will be out in about 5 years. A monthly IV infusion is already out. I gave myself shots of Betaseron for 3-4 years, now I get an infusion of Tysabri once a month instead. No every other day shot, anymore.

You need to treat your MS, right now, as the treatments are available now. The first line treatment for MS are self injectable meds, right now. But what it will be in 5 or 10 years is not known but it is not likely it will be self injectable meds.

Wow, Lynn this is great information! My diagnosis was 9/13/08 and no one told me the amount of helpful information that you just posted! Being a nurse, I aggravated the crap out of every doctor, nurse and pharmacist I knew! They didn't seem to know anything in any detail. Very frustrating!

I found DS by accident in a Google frenzy after leaving my neuro's office 9/13. I think I may have found this all eventually, but thanks for putting all the links and information right here! Since I have the help of everyone on DS now, I can share and have shared this great information with MS patients I work with, too. Rebecca

THANKS to everyone dslynn u are a wealth of info i appreciate so much. i think i wrote that anxious off my ass and feel better now. still asleep in those areas but calmer about it. also got a referal today April 7th I get to see a neuro my family doc thinks i will like and she respects very much. looking forward to that. btw yest way my 1st day back 2 work in 5 wks and t felt great! I'm gonna be okay. my g-pa god rest his soul used to say "put that bottom lip back in ur mouth (quit pouting) b-4 a bird flys by and shits on it" LOL!!! Well, okay Grandpa here I go...

Dear allie,

i had progressive symptoms many like the ones you have talked about, after a long hard fight, i have found medications that really improved my life, instead of being at home, i go out and run. i regained my abilities to type and work again. i owe most of my improvement to a drug called Rituximab, it is an infusion, and i have 2 of them a year. the same drugmaker is starting to test a new version of this drug untented for ms, Rituximab is intended and approved for Lymphoma and Ra. i can tell you that this medication, actually gave me back use of fingers and my left hand to near full function. its a hard fight, and i wish you all the best, dont get too down on yourself, and keep your chin up, we all got the lovely MS, but each and every one of us can stare it down and tell it to kiss our tushes.