Hi,
 

I'm new to the forum but wanted to ask some questions.

I live in Colorado and I was told by two different people that Colorado has the highest statistics for people with MS.

I was diagnosed about 2 years ago by my Neurologist and was given a script for Marijuana for pain. It didn't work so I stay on my Methadone. I also have RSD, TOS, Interstital Cystitis, Cronic Fatigue Syndrome, Cronic Pain Syndrome and now have been diagnosed with Lyme disease.

My fatigue has become much worse, I stay sick at my stomach a lot, I have twitching and jerking, I have allergies, and too much more to name going on right now.

I have gotten worse this month. My caregiver thinks it's my MS getting worse. She has been a caregiver for years and was also the boss in the caregivers office for 8 years so she is pretty up on what going on with clients.

I don't know what to do anymore. I know I need to make an appt. with my Neurologist but now I need to deal with the Lyme disease.

I was wondering how MS usually progresses. My neighbor has MS and we have the exact same days but now I am seeing other problems.

What are your worst symptoms of MS and as I said, how does it seem to progress with people.

My daughter is also one of my caregivers and she takes care of another lady with MS that is in a wheelchair. I know there are different kinds and the progress differently.

Thanks for any help you can give me.
Ada

Hi Ada, wow, that's a loaded question. It's so different for everyone, it's really a crapshoot to say that there is some kind of pattern or "typical" course.

I've been MSing about 28 (carp! I just saw that!) years and for the last five, everything on my body is revolting in new ways. I went from an extremely active, outdoors enthusiast all the way to a veritable couch potato.

My left leg and foot are dead weight and the left hand is on its way out, I think, for good. At times, it has interfered with virtually all of my senses and movements.

Yet, I have MS friends who are raising kids, on sports teams, hopping the globe, and working at high level jobs full time.

I can say that almost all of my major events began with a small place of numbness that spread over weeks or months, and never quite went completely away.

Hi Ada,

Yes Colorado is known for having high stats of PwMS. I don't believe living in Colorado has any bearing on my diagnosis....I had only lived in Colorado about 3 years when I was dx'd and I can take symptoms back to childhood.

Progression is different for each of us. Some will progress quickly others slowly.

My legs are the most affected and I have fought from the very begining to keep them going. I have a problem with stiffness and I'm hoping to get it somewhat resolve with my up coming neuro appointment.

I am mobile and only use a cane occasionally.

The National MS Society has alot of information that you may find helpful.......
http://www.nationalmssociety.org/sit...m_gen_homepage

Also The Rocky Mountain MS Center is a good resource......
http://www.mscenter.org/index.php/

You have your hands full with health issues and I wish you all the best :hug:

Oh Ada :hug:
I'm so sorry you have so much going on to have new symptoms to top it off. As AMN said MS is different for everyone.

I've had MS for 10 years. The first three were tough, lots of numbness, hands and feet, right side worse. I had to go on disability, then pretty steady until Jan '06. I seem to be on a slow decline. Right side is weaker and hands so painful, everything in my life is trying. But I keep on keepin' on. Have realized I'll just have to do most things differently now. ;)

I moved to CO 2-1/2 yrs ago and from my MS friends it seems that half of them, at least, moved here from somewhere else.

I hope you find the answers you need. We are here for you. :hug:

Hi and thanks
 

for the help.

I have lived in Co. for 35 of my 55 years. I'm from Ky.

I have started having the leg and feet problems. If I go off of my Methadone then I can't stand the pain and can't walk. I am now dealing also with the tightness in the legs and feet.

I use a cane only when needed also. I work hard to keep going also. It's a constant struggle.

I was surprised to see two Coloradoians answer me. I'm about 150 miles from Denver.

I have a Neurologist in the Springs that has helped me. He was my neighbors Dr. and he had me to go see him. The man is very good.

Where I live it seems like 75% of us are implants from other areas. I was just wondering if the altitude makes a difference on MS.

Thanks again for the help.
Ada

colorado loving it
 

Hello and I also live in Colorado, last week at a seminar by Dr. Murray my nuero he asked the crowd how many moved to Colorado after diagnosis. It was interesting about 2/3. he mentioned most people move here due tot he climate. It is the most MS friendly. I love it here and have improved. But have gone on organics foods and eat healthily. No saturated fats or try to not have them. Good supplements from Whole Foods. he told me to take Reversal, vitamin b, fish oil, alpha lipoic acid, no soy products, grape seed extract, And I have. I work out a little, swim, ride a bike. But I can't walk with out assistance, a walker. I use a scooter for longer distance. I have had three doses of Tysabri and noticed improvement.

Hope this helps, hugs Christine

Welcome dreambeliever128, Nice of you to drop in from your RSD forum home. I'm sorry for all your multi DX. What a shame. :(

I hope you like it here and visit often.:D

Hi and thanks
 

for the help.

My right side has been my worst and since I have TOS and RSD also it is so hard to figure out what is causing what.

My Dr. gave me paperwork to get tested for the lyme disease so we can deal with it.

I also get these pin prickling feelings all through my body. I can be laying in bed at night and feel them and then the pain starts in.

I've quit walking this month due to more problems with my feet and legs. I have been taking walks for over 8 years but this month has been a very bad month for me.

As I said I have one friend who is in a wheelchair from MS. She does good at times and then spends a lot of times in the hospital. She is only in her early 40's. I am hoping not to get there.

Ada

Hi,
 

content deleted by admin as per guidelines

Hi GNP....Welcome to the MS Board.

I think Ada is here to talk about her MS not her RSD. I read the link you put in and she seems pretty consistent to me...she talks about the weakness in her ankles and feet.

I hope you will come back to visit and support us.:)

Hi Sally,
 

thank you for your support.


Ada

No Problemo, Ada. I see that our swift and thoughtful Mods took care of the problem..LOL.

Thanks Chamar and KD..:)

Hi there DB!

I am RRMS and was Dx 5 years ago. I am on Rebif. I am mobile but use a cane for rough ground or longer distance. I don't trip like 5 years ago, but I have a numb right foot and hand.

Here comes Beth barging in on Taffy. Wow, I didn't realize our similarities. I too have RRMS and have a numb right foot and hand. But, I was dx 10 yrs ago and walk good without an exacerbation. Although I tend to do it (walk) on the diagonal. Which does lead to bumps and bruising for me and those that get in my path. :D

Gasp* I drift to the left........... (and walk into door jams):D

Cool, I'm a right drifter and no door jamb or corner is safe. :confused: Maybe it's me who is not safe from door jambs or corners. There that sounds better. :winky:

so if the two of you walk next to each other....you could "drift" into each other just enough to walk straight? or would i be correct in assuming that one would try to push the other thru an open doorway or window? :wink:

LOL, Monkey, I can see that happening!

I'm happiest in a hallway, I just bounce from side to side. I did great on a cruise once, we hit some rough sea and I think I was the only one walking normally!

Yep, we'd either balance each other out and head straight. or drift off in opposite directions away from each other. Either way it's a pretty funny visual. I like how your mind works. :D

or just keep pushing on each other and never get anywhere!

Speaking of door jams...I nailed one so hard one day...I flew backwards and landed on my backside. Took awhile to know what hit me!:D

Hi Everyone,
 

I am a hallway person too. At least you just bounce from wall to wall and there's nothing in there you can get hurt on.

I almost fell twice last week into the bathtub. I have fell so many times I ended up with arm and hand problems.

The new balance shoes is not helping too much but hopefully as I wear them more they will.

I got a call from the hospital yesterday. They are wanting me to see my Neurologist and they also want me to go through the sleep apnea test again.


My story is too long so I'm not going to go into it but I also have a Vegal Nerve Stimulator that was put in in April for depression. We turned it up awhile back and it caused breathiing problems for me and made my sleep apnea worse. We have turned it back down but I am still having the problems so I am thinking eventually we will have to turn it off completely.

The lady that called me wants me to see the Neurolgist to determine what is causing the twitching and jerking I am having. I am currently seeing my Immunologist, I just postponed a Cardiolgist apt. until after my sister leaves next week, I see my PCP of 17 years often and I still have to see my hand surgeon so I just am having trouble wanting to see any more Drs. My hand surgeon, Orthopedic, and Neurologist are all in the same building but they won't let me see all 3 of them on the same day. It's in Co. Springs so it's about 35 miles from where I live.

I have cuts and bruises on me where I have walked into everything in the house.

I will make an appt. with my Neurologist in a couple of weeks. I am anxious to see him and see what is going on with me.

As I told Sally, I lost my husband of almost 35 years in Nov. of last year and it just doesn't seem to get any easier.

Ada

dreambeliever
 

:hug: :hug: My heart breaks for you. Loss of your dear husband and all these health issues must seem and impossible burden. I wish words could make it better.

I just want you to know we are here and are really good listeners. I've found just voiceing concerns eases the mind a teeney bit. Post as often as you need.

Just keep pushing at those docs. The squeeky wheel and all that. There is truth to that. Big hugs of kindness and concern. :grouphug:

Sending Prayers and hugs your way, Ada.:hug: :hug: