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Old 04-18-2012, 11:57 AM   #1
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so many questions... can anyone help me understand?

Hi, I was diagnosed with relapsing-remitting Ms three years ago. Can anyone tell me how to get medication? My doctor who I no longer go see told me I have "a good twenty years to live" and sent me away with a book about Copaxone.. Which I read a few months later when I was able to see again. It did not tell me how to get the medicine. So I went back to the doctor.. He did not tell me how to get medicine either, I just got blown off with no questions answered. at that point I gave up and continued with my life as usual now three years since diagnosis life is getting harder. Moving around hurts everyday, I push myself hard to keep my muscles strong but I still have times where I cannot walk without help.. And its gotten more frequent and more painful this last year. What do I do? Who do I talk to? And where do I find a real doctor who cares? I'm in an eighteen wheeler with my bf, we have decided to move out of the south because that's where I experience the most problems.. Just don't really know where I could get the necessary health care.. Anyone have any advice? Every bit of information anyone could give me would be very appreciated. Thank you and suggestions for dealing with the pain? Please

 
Old 04-18-2012, 12:11 PM   #2
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Re: so many questions.. can anyone help me understand?

Welcome!!

You have more than 20 years to live. I have been kicking and stomping for 32 and if I follow my family tree, I need to plan on another 45-50 years!

Meds will not stop your symptoms. If you are heat intolerant now, you will probably have this problem for years to come.

Your neurologist would write you a prescription for the meds. If your neuro will not write a prescription, you need to ask why. If it has been 3 years, you will likely need to be re-checked. That is, the doctor will probably need to re-evaluate you to see how you are today. If you are progressive, the meds will be a waste of your time and money.

During these three years, have you had regular follow-up's? My neuro sees her MSers at least every 6 months (for those who have been diagnosed and do not need closer follow-up's).
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Old 04-18-2012, 12:36 PM   #3
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Re: so many questions.. can anyone help me understand?

Hello and thank you so much for responding and thank you for telling me I'm not going to die in 20 years give or take!! I don't know anyone else with Ms and what you said is amazing to me. Thank you for giving me hope.

so what I need to do is go to another doctor and get re evaluated?? No I have not returned to him.. He never wrote me a prescription, he told me that copaxone is what I needed but that was it.
Honestly I had no idea that a prescription was supposed to be written had I known that I would have looked for another doctor years ago. My doctor is one of two in my town, I tried to see the other one but there was a communication issue. I couldn't understand a word he said and he did not seem to understand me..
I am heat intolerant but only within the past year and during relapses. I live in west Texas where it gets very hot and only recently has it started kicking my butt. I've noticed heat and humidity are very hard for me to deal with, when in the past, they never bothered me

 
Old 04-18-2012, 01:00 PM   #4
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Re: so many questions.. can anyone help me understand?

West Texas is hot indeed! You might try Tyler, Texas. It gets hot, but not as bad as West Texas and no where near as humid as Houston! There is an excellent program for MSers at the hospital too. I am hoping that my youngest will choose graduate school in Texas so I can go back there.

Year round comfort zones really vary according to the MSer. Has I my way, I would probably live in Kauai, Hawaii. I spend my summers in Kansas hibernating indoors.

Because Copaxone is a prescription med and 3 years has passed, I would think an MS Specialist would want to re-evaluate you. At the very least you might need an MRI to ascertain what has been happening during your 3 year "hiatus".

MS has a variant which is fatal, but it is extremely rare. Otherwise, MS is like a series of speed bumps in your life- you have to slow down at times, but you get over them nonetheless!

If you start any med, you will have to be monitored and have your liver checked. You should also plan on seeing your neurologist at least every 6 months. With a few adjustments and learning what triggers you have (things you do, eat, or experience which can trigger symptoms), you can have a full life.

I hope y'all feel at home here!
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Old 04-18-2012, 01:34 PM   #5
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Re: so many questions.. can anyone help me understand?

Yes Hawaii and Kansas!! I have thought the same thing lol Kansas for me is possible, but Hawaii is a bit more difficult lol I didn't know about Tyler having a good program, thank you for that info..we are trying to find somewhere to move where I can get the medical help and if possible be able to move around easier. I've found the southern states to be very difficult on my body. My bf is a truck driver I ride along, and have found myself most comfortable and productive in colder climates. Colorado especially but its so darn expensive to live there. Been looking hard into Oklahoma.. The climate isn't as harsh as Texas and in Oklahoma city there are several specialists and research centers dedicated to ms. I would like to be a Guinea pig.. I'm sure they would find something that helps me but at the same time that can hopefully help others as well.
I did not realize that I will have to go through a re evaluation.. Does that include another spinal tap? How hard is it to get medicine? Are there programs that can help with the cost? I've heard the medicine can cost anywhere from 3000 to 6000 a month.. Is that true? There's no way I can afford that!!
I don't think my doctor really specializes in ms.. He couldn't or wouldn't don't know which answer a single question I asked.. That's why after the second time I never went back.

 
Old 04-18-2012, 01:37 PM   #6
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Re: so many questions.. can anyone help me understand?

How are you med free???? What do you do to deal with it??? Please share. I have absolutely no desire to have to poke myself with a needle everyday if I don't have to..

 
Old 04-18-2012, 03:17 PM   #7
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Re: so many questions.. can anyone help me understand?

Quote:
Originally Posted by jenntx1377 View Post
How are you med free???? What do you do to deal with it??? Please share. I have absolutely no desire to have to poke myself with a needle everyday if I don't have to..
I am progressive (I get no breaks between problems). Also, at the time I was first diagnosed, steroids were the only option. My neuro told me that I could live a life without the steroids if I avoided stress.

I made a point of learning my triggers. There are triggers over which I have control and a few over which I have no control. If I can control the "controllable triggers", then I empower myself. On days when I succumb to events over which I have no control, I do not beat myself up. I take my time and recover.

I have also found defenses which have worked for me. For example, I have 3 different pains in my head. The 1st is behind my right eye; this is, I have found, due to light sensitivity. I have ben wearing polarized sunglasses indoors and outdoors since 2002. That pain has slowly diminished. If it reappears, I use acupressure applied perpendicular to the pain. The 2nd area of head pain is in the center to top of my head. This pain is almost daily. For me, Diet Dr. Pepper has helped me the most. I tried other drinks (non-sugar) and Diet Dr. Pepper seems to melt away the pain. The 3rd area is in my lower skull, mostly my right lower quadrant. This pain melts away with dark chocolate. These pains are MS pains and not typical headache pains.

Other things- the vacuum cleaner hurts my ears. I wear a pair of shooting earmuffs and it stops the pain!

There are many more things that I do. Meds are not cures. The meds are supposed to slow down the progress of the disease, but I do not trust the long term consequences of meds.

Attitude goes a long way in disease management. For every symptom or problem that comes along, I have a counter strategy to fight it. This, for me, is a daily fight. I trust that God will help me through each day and I count my daily blessings.

MS does not have to end our enjoyment of life and I am too busy to allow MS to catch up with me! Yes, I may be slower than I used to be, but I still enjoy each new day.
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Old 04-18-2012, 04:50 PM   #8
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Re: so many questions... can anyone help me understand?

Hi, I just wanted to add that Copaxone is not your only choice in meds....there are 4 injectable drugs for MS and each one is given differently, not all of them are every day like Copaxone. You absolutely NEED to talk to a MS specialist at this point. Too much time has gone by and you are obviously starting to feel the symptoms. The idea behind taking a disease modifying drug, is to slow down the progression of the disease....it wont cure MS, but it very well may keep you stable for another 50 years. Its silly NOT to take something, when the odds are without taking one of the drugs, you WILL eventually progress into another form of MS where life wont be exactly as you know it now.

Insurance is the question. Finding a MS Specialist is also the question. I would look up your local MS society and find the closest chapter to where you are now, call them and ask for some names of MS docs in your area...there are probably more than you are aware of...and since you do have the ability to travel with your man, maybe you can go to one of the big clinics in a big city while you are there...once you get a prescription you can get it filled anywhere. Most MS drugs are mail ordered, not picked up at the local pharmacy.

I was on a drug called Rebif and I hated it...I injected 3 x a week for many years..Now, I take something called Low Dose Naltrexone, which is oral. I swallow a pill before bedtime. I havent had a new symtom or new lesion in more than a year.

You will need updated MRIs of the spine and brain, but a spinal tap, maybe not. If you can get your hands on your old records or tests, you should do that, it might eliminate having to repeat some of what is in store for you. But MRIs should be repeated, there is no way anyone is going to write you a prescription without checking to make sure you really do have MS..

Good luck to you. Use the MS society, they are very helpful.
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Old 04-18-2012, 05:25 PM   #9
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Re: so many questions... can anyone help me understand?

I'm sorry to hear that you have progressive.. But I'm glad to hear that you have found things that help you!! I too have found that certain things that do help with some things. I've found that the five hour energy shots help to relieve a good portion of body pains and get rid of headaches I get that run up the left side of my neck into my temple area and left eye.. And mountain dew relieves the other headaches which could very well just be caused by blood sugar being to low. I am borderline hypoglycemic.. never gets high only low.. Do you take a daily vitamin? I did but found I feel better not taking it.. Today I'm in Albuquerque and find the heat is not effecting me as badly which has been nothing shy of wonderful lol now if I'd get my vision back in my left eye.. Driving me crazy been four days now ... Just waiting!!

 
Old 04-18-2012, 05:34 PM   #10
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Re: so many questions... can anyone help me understand?

Quote:
Originally Posted by jenntx1377 View Post
I'm sorry to hear that you have progressive.. But I'm glad to hear that you have found things that help you!! I too have found that certain things that do help with some things. I've found that the five hour energy shots help to relieve a good portion of body pains and get rid of headaches I get that run up the left side of my neck into my temple area and left eye.. And mountain dew relieves the other headaches which could very well just be caused by blood sugar being to low. I am borderline hypoglycemic.. never gets high only low.. Do you take a daily vitamin? I did but found I feel better not taking it.. Today I'm in Albuquerque and find the heat is not effecting me as badly which has been nothing shy of wonderful lol now if I'd get my vision back in my left eye.. Driving me crazy been four days now ... Just waiting!!
I was in Albuquerque last May, but it was not hot. The air quality was not pleasant!

I take 1000 iu vitamin D3 daily as directed by my neuro felt my D level was low but not deficient. She told me it normally drops during the winter months. I take vitamin C when I feel stuffy or feel a cold is coming on. I have not had a cold in several years.

The 5 hour energy shots is giving you sugar and caffeine. I believe that this is the main thing in my 2nd type of head pain relief.

My BP runs low (genetic). I do get blood sugar drops, but this is usually near meal time. I will stop and eat when this happens. In mid afternoon it just takes a few M&M's to get me through this.
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Old 04-18-2012, 05:51 PM   #11
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Re: so many questions... can anyone help me understand?

Hi Nikki thank you for your response!
Yes I know I need to do something.. I am confused and have no idea how to do much. In my area I have asked the hospitals, my doctor, health and human resources.. And so on what to do and how to do it.. My area has been extremely not helpful to say the least. No referrals or anything. How do I use the Ms Society?? What do I need to do??? Until may of 2009 when I was diagnosed, i've never been sick. I had tonsillitis when I was 8.. That's it never even the flu... never dealt much with doctors dentist and eye doctors was all. I do not have family that can guide me through things, my dad used to know about this sort of thing but had a stroke shortly before my diagnosis and says he doesn't remember who I would need to talk to.. Idk. I called shared solutions, I did not have much luck with them, they simply gave out my phone number to a person with Ms that I really couldn't talk to. We were polar opposites.. All of this BS I've gotten when I do try to learn is what made me quit trying initially. My bf is what has made me try again. Just this time asking people with the disease instead of a degree. If I find someone to contact... What do I say? How do I explain that all of this is foreign to me? I've noticed people don't understand that I don't understand.. So frustrating

 
Old 04-18-2012, 07:24 PM   #12
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Re: so many questions... can anyone help me understand?

Hi again. I think you have come to the right place. I would start reading some of the posting topics on here and the comments from other MSers- if nothing else it will help you feel less alone. You are NOT alone. Over 400,000 people in the US alone have MS! And we are glad you joined us.

The MS society- the National MS society is findable online and has a toll free number. Id start by explaining that you were diagnosed so many years ago and never was offered any drugs at that time....you basically lived your life without any neurological consults or drugs and now you feel that you need to get back on track. Ask to speak to someone who can help direct you to answering some questions. They will give you a local number to a chapter in Texas where you may find more local resources.

The next thing I would suggest to you is the local hospital.......call them, ask for their physician referral person and ask if they have any MS specialists they can recommend to you. If not- and it may be NOT- ask if they have any neurologists who they can recommend. Youre going to need to make some calls to each of them. Find out what insurance they accept and more importantly, ask the person who answers the phone if the doctor has treated alot of MS patients. You want a doctor who sees ten MS patients a week ....that way he is at least somewhat qualified to help you. When you find someone to get an apppointment with, youre going to have to tell the doctor what you told us....that you were once diagnosed with MS, didnt follow up and now feel the need to make sure that you DO have MS and start treating it accordingly. Its a place to start anyway.

If you are going to be in a big city , you might want to call ahead and find out what the waiting time is to get an appointment with a MS specialist. Usually its not that easy to get in, so pick a doctor who you know you can get to with notice!! A MS specialist is really your very best resource because for all intents and purposes, you are kind of starting over.

No MS doctor will hand you drugs or just a prescription. What they will do is test you to make sure you really have MS- and find out how progressive it is, and then make suggestions to you about treatment options. Unfortunately , needles MAY be in your immediate future as most people start out on Rebif, Avonex or Copaxone...there are other choices available, but injecting is the "old standby" and not a bad place to start. Its not hard to learn how to do it, I promise. And, if you choose to do it, we will walk you through it and be here to answer questions. Shared solutions is copaxones's support system, they gave you someone to talk to, but they didnt give you a doctor to see? Maybe you want to call them back and tell them you have medical questions and no doctor and you are looking for someone they work with in your community. They will probably have a neurologist whom they have trained in Copaxone who can help you. Thats option 3...but keep in mind, if they refer you to someone, he is probably going to put you on Copaxone without giving you other options....if you want other options, youll have to find a doctor not associated with any one particular drug.

Go read some posts here...dont let some of it scare you. We have posters who are terrified of the unknown when they first write in, but months later, they are just fine....we also have alot of "what if its MS questions" only to later discover it wasnt MS at all....so read carefully and remember that this forum is for opinions and questions- but we arent doctors so we cant answer medical questions.

Im sorry you have been through so much with your family and lack of medical care- thats got to be really tough. It sounds like you have a great boyfriend though! And, hes right. You want to deal with this now, while you stil have the choices and options to do so. Youre not going to die in 20 years! Not from MS anyway...but if you want to avoid progression and hopefully live a very full life- you need to start taking care of your medical issues and you need to be seen at least yearly by a doctor. So, go find one!

If I were you, Id start with the MS society by calling or searching it out online- find your local chapter. You may even find a support group which you can attend locally, where others with MS can give you some doctors names whom they use. I know my local chapter of my MS group is a wealth of information when it comes to "does anyone know anyone who....." Or "Who has been to Dr. so and so and what is he like?" . Remember, we are all in this together and knowledge is power! So find some local people to talk to, but also USE US to ask questions about whatever is on your mind! Hang in there...youve made it this long, nothing changes overnight!
Nikki
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Old 04-18-2012, 09:05 PM   #13
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Re: so many questions... can anyone help me understand?

thank you thank you thank you!! This is the most help I've had it is so greatly appreciated and thank you both for the support, it is really nice to have. My bf is wonderful but really has very little understanding.. But he tries
I will definitely be looking up the Ms society.. I will look into the area we will be working out of and hopefully living soon.. I have given up on my town, and really have no desire to return. We just stay on the road now, until we find a place we want to move think its going to be Oklahoma. So Ms society should be able to give me doctors info there? Right? I'm going to go look online thank you so much!!

 
Old 04-19-2012, 09:50 AM   #14
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Re: so many questions... can anyone help me understand?

If you are going to live in OK, OKlahoma City/Norman and Tulsa have MS Specialists. The OMRF (825 N.E. 13th Street, Oklahoma City, Oklahoma 73104) has a large MS Center that opened new facilities on the first floor of their research tower. The OMRF does many things including MS and they have MS Specialists in house.

If you go online, you can order informational brochures which explain MS. These are available from the MS Association or the MS Society. These can help your BF understand more about what is happening.

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Old 04-19-2012, 10:25 AM   #15
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Re: so many questions... can anyone help me understand?

Omg!! Yayy!!!! Thank you hawk do you mind if I call you that? Or do you prefer Jay or Jayhawk?
That info will help so much!! Thank you!!! We are looking into housing in Tulsa and a trucking company in okc.. This may turn out to be easier then I ever thought possible. Thank you both so much I hope the two of you know how much help you are being. This is the most information anyone has given me. Big hugs to you both!! <3

 
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