Multiple Sclerosis

[stacyvonne]

I am at my wits end. I have a PCP that I am discovering is convinced that I have Fibro and doesn't want to acknowledge any new symptoms or the fact that I am missing key symptoms of it. I have so many more symptoms of MS .... to list a few...memory loss, can't find my words, feelings that I can only describe as RLS syndrome from my toes to my chin but is excruciatingly painful and feels as if bees are stinging me and getting struck by lightening. I have Trigeminal Neuralgia, the tips of my fingers feel like they are being stabbed by needles, I get stabbing, burning pains in the bottoms of my feet, without pain meds I can't walk, I have limited strength in my hands, constant vertigo heaviness on my chest, problems swallowing, and I could go on and on and on. I have finally gotten my doctor to refer me to a Neurologist but that appointment is a few weeks away. I have been going through this for almost 4 years (longer with mild symptoms but the really bad ones for almost 4 years). I have tried many medications ranging from Soma with codeine to Lyrica, Cymbalta and many more....It seems like since the onset of these issues I have major sensitivities to most medications and have to stop as the side effects are so much worse than the benefits. I am currently taking the max. dosage of Ultram (400mg daily) and up to 3 lose dose Xanax daily. These are the only meds that I can take as of now without horrible reactions. My doctor wants me to try Oxycontin or Methadone and I am flat out refusing. I don't want to end up with this undiagnosed disorder and addicted to a major narcotic on top of it. I said all of this to ask this question......what the heck do I do or say at the Neurologist to get her to take her time with me, to understand what misery I am going through, that it's real...not just in my head. And to be proactive in helping find a definitive diagnosis so I can get the proper treatment? I am seriously at my breaking point. I can't work any longer which is devastating to me (not to mention our finances). I have to set my alarm 45 minutes earlier than I need wake up so I can take my first dose of medicine so I can get out of bed without falling down. I try to keep an optimistic outlook (most days, obviously today isn't one of the best examples of that,lol) but it is getting harder and harder. I just would like some advice from others who have been through this, maybe a "there really is light at the end of the tunnel" stories :) My family is very supportive but it's hard for them to understand what I am really going through. Okay, I will stop whining now and promise to never do it again :). But, if you've read this far, thanks for "listening" to my rant and any advice would be greatly appreciated.....Thanks :)

[armywifey]

I was diganosed with fibro in june ofthis year. I have many symptons of MS. But fibro can also have some of the same symptoms. I have all the pressure points for fibro. My doc i has tested me for MS. But has now decided to do a spinal tap because all the other tests are showing normal. I have had many medical problems my entire life. and have had over 31 surgeries, Due to those other issues, I am 35. and all this started when i was 16 with the other medical issues. The meds for fibro can help and sometimes they dont. for me when i first started taking them i they seemed to help a lil. BUt now i am maxed out on lyrica. and it dosent helpat all. It took me years to find a doc that was willing to figure out what was going on. But i finially did. Keep looking for doctors, some just think people want pain meds, and I went threw that too. SO if you have a doctor that thinks you just over reacting. Find a new one. Fibro can cause sever pain, numbnesss of arms legs, make ur muscles lock up. cause u to become dizzy. these are rare symptoms of it. But it can happen. My advice to you is if your doctor thinks your crazy get a new one. I went years with doctors thinkin i was nuts, but kept changing doctors until I found one that was willing to find out what was actually wrong with me, When i walk in and im stiff, he looks at me and says bad day i see. and gets to work on trying to make it better. I see him now once a month. Keep trying. NOt all doctors will thinkyou crazy you just have to find one willing to takethe time to figure out what is actually wrong with you
Best wishes and good luck and KEEP trying

[stacyvonne]

Thank you so much for your encouraging words. I am sorry that you are going through all of this. I completely understand what you are feeling. As I mentioned, I don't have too many of the difinitive signs of Fibro. I don't have even one of the tender points and although I do have symptoms that could be wither disease, a lot of them aren't symptoms of Fibro at all but the are of MS. I just have a little while before my appointment with the Neurologist. I am happy about that. I have a good feeling about it now. I feel like this is a doctor that is going to search for a solution until she comes to one.
Again, thanks for the kind words, I really needed that:) Good luck and I wish you wonderful, wide awake, feeling wonderful, days ahead of you. Have a fantastic day :)

[armywifey]

anytime, all of us that are going threw pain comditions and feel lost at times need someone who understands and to talk to and to help them threw it, GL with your appt. And i hope they finially figure out what is wrong with you soon
best wishes and gl

[ralph pelkey]

Dear stacy my name is ralph pelkey i read these storys and try to learn from them and try to give back if i can.I was diag with firbo in 1996 it started with my legs hurting then my arms and my lower back I got hit buy lighting in 1999 and everthing got real bad.They done an MRI on my head but not my back and told me its just my firbo no its been 10 years of pure HELL . While all this was going on i went to work one moring i got fired i was a general manger for a large concret company well that has been 10 years ago and have not been able to work sence .I WISH I COULD I LOVED TO WORK and miss it so much.I just started seeing a specialest at KU MED CENTER here in wichita kansas {WHERE I LIVE} This guy put me through the mill {THANK GOD} now mabye we will find out whats going on.He said i was almost blind in my right eye and losing my vision in my left eye.Great thats just what i need.I have sever pain in my legs my arms lower back no strenth at all i fall a lot {IM GETING GOOD AT IT} HA HA I dont drive unless my wife is with me becase i get lost some days i cant rember nothing and i get confused a lot i just went through 6 week of being in bed not able to do anything and hurt so DAM BAD i didnt think i was going to make it. I been trying to get on SSD been fighting with them.I feel for you GOD i wish i could thke your pain away and you are so young im 50 now.I dont know how you cope being sow young.They got me on sow many pain killers Im taking ULTRAM 200mg ONCE A DAY 3 LORTAB #10 3 times a day 3 lyrica 150 mg 3 times a day and 1 percoset at bed time and 300mg of trazadone to sleep 200mg of zoloft and 1 mg of resperdol and 40mg of protonix for my stomach because of all the meds.I think the ultram helps the most i no there going to do a spinal tap that scares me they just done one to a friend of mine they messed it up now she is paralized from the waste down I read the storys of people with firbo ms cronic pain and cronic fatiuge and respond to them i wish people wood reply to them it really help and this is what this web site for. And for some of us this our only contact with the outside world I hope you reply to this i would like to know how you are doing and if your doctors have found any thing new.Well must go for now GOD BLESS AND I WILL KEEP YOU IN MY PRAYERS Ralph pelkey

[stacyvonne]

Thank you SO much for your heartfelt reply. I really appreciate it. I am so very sorry for the pain YOU are going through as well.
I went to my doctor a few months ago and before the appointment I wrote a list of all of my symptoms. I told him that since I come in with one or two symptoms at a time I thought it was important for him to see everything right in front of him, all compiled together. The list was a page and a half long. He sat and read everything, asked me if he could make a copy (I said of course) and then he referred me to another Neurologist with the recommendation to find out if I could have Multiple Sclerosis. Due to the horrible economy right now we ended up losing our insurance but have finally qualified for the state assisted medicaid. I have another appointment with my family doctor in two days because although the Tramadol does work best for me, I am having a lot of breakthrough pain and a lot of muscle spasms so I think I am going to need another medication added to the Tramadol and the Xanax that I take to sleep. (I have adverse reactions to traditional sleep medications and the Xanax work to help me relax enough to actually get at least a few hours of sleep a night. Since we have the insurance again I will be going to the Neurologist in the next few weeks. I am having mixed feelings about that. On one hand I am anxious to finally find out what is wrong with me and on the other hand I am afraid to find out what is wrong with me :)
I am also grateful for your reply because just knowing that there is someone who completely understands what life is like living with chronic pain is comforting. I am married to one of the greatest men in the world and he takes such good care of me but he still can't fully understand what it means when I say to him "Yes, I understand that you remember that we had a conversation about that just yesterday but I cannot remember even having the conversation let alone what was said." I know he believes me but I can also understand that it is frustrating to him, too. I feel so bad for him. There have been times that I have wondered if me leaving would be best for him in the future. If he is with me and I end up having something that is just going to get worse, is it fair of me to ask him to take care of me? I know his answer to that is that he meant every word of our wedding vows and if it is something like that, that he will be by my side and take care of me every step of the way. Which just makes me feel even more guilty. We have 7 children between us. I have four from my first marriage, and 18 year old daughter (who just moved out "sad :(", a almost 17 year old son, and two more daughters who are 13 and 15. My step-children (whom I love just like my own) are 17 and 12 year old daughters and a 14 year old son. They are also so great to me. They have really stepped up and they take care of things in the house on the days that I can't, they know when I am having a bad day and will make me go sit down and will do that load of laundry or cook dinner for all of us. But the guilt comes with that as well. I feel bad because of the muscle spasms I can't really drive right now because it would be dangerous and since my husband is working they have to find rids to and from their sports practices and games. I feel bad that I have to miss a lot of their games because I can't sit still long enough to actually watch them and I just cause them anxiety worrying about me so I have decided that for now it's best to just not go. But they have wonderful friends that will take my camera and get great pictures of them for me.
Wow, thanks for giving me the chance to vent some of these things. Again, that's where the guilt factor comes in, I try not to complain to my husband a lot because he does so much and he is already heartbroken for me anyway. If you ever need to vent please feel free to message me again. I hope that tonight finds you feeling better, that you have a good night tonight. and that you get a good nights sleep. Stay positive and try to pick out the good things in your life and hold on to them.
Thank you again,
~Stacy

[armywifey]

I know exacty how you feel about the guilt. I was teaching my oldest daughter who is now 12 how to cook when i became unable to do much. Sincethen my husband has taken over that chore along with everything else that i cannot do. and my daughters pitch in as well. I feel like i am letting them down at times. But i also know that they wouldnt have it any other way with me being sick. My husband Has come to understand to not ask me questions of subjects we talked about the night before because usually i do not remember. He has also come to expect me in to middle of talking to stop, go silent and then ask what we where talkin about. It takes it all in stride, and jokling calls it the blonde factor. LOL Your husband loves you. And alot dont have that. And they dont have the support that we are so lucky to have. You leaving would do more harm then good for everyone. So just let nature takes its course on that. Print up everything you can find on MS and fibro. And have ur family readthem. it will help them understand alot more of what you are going threw. (i.e about the not remembering part, a lossing your thoughts in mid sentence.) My friend has both MS and fibro. she dosent show alot fo the pressure points for fibro but they cant explain why she has alot of the symptoms she does have that dosent fit ms. so they told her she has both. she is seeing a specialist for both now.and is doing better. there are different degrees of both these from mild to sever. I have sever fibro. mixed in with other medical problems they are now finding. I also ran into one lady that has ifbro and was recently dignosed with lupus as well. Just take it all one day at a time. And when you get overwelmed find a support group. or talk to me n Ralph. me and him went back n forth for several days. just talking to each other about what we where both going threw. and it helped me out alot to know i wasnt alone. and he tries to reply to all the new posts. as do I but on our bad days we miss some people at times. I wish i could do alot more with my kids and my husband. The computer helps alot. And they knwo this. and my husband got us both a game to play online on our comptures when I am up to it. It gives me friends that i can talk to and do things with and not leave the house or move around. Since i hardly leave the house at all anymore. Just because i hurt so bad after. ANd he knows and understands this. And also accepts it. he tells me I'd rather be at home with youand the kids anyways then out and about. And I know he is telling the truth. Even though I try to send him out with his friends he hardly goes . sometimes he does but it is rare. I am lucky in that.

God bless you and If you need to vent or just chat. We are here to listen and reply to your fears or just listen. It helps alot to know we arnt alone in this. I know because it has helped me out so much.
Chris

[ralph pelkey]

hello its ralph im glad to here from you.you can vent all you want thats why were here to help one another through the tuff times and enjoy the good times.I know your concerns about you and your husband future hang on to him with all your mite.I feel that GOD brings people together for a reason a he is there for you no matter what.I went through the same thing with my wife thinking she would be better off with some one thats healthy but i figured out shes here because she loves me and is in love with me and that is a great feeling.We have seven kids too my oldest is 32 my youngest is 22 i had a set of twins boys and in 2000 one of them took his life he would be thirty one know {GOD BLESS HIM} it like to have killed me going through this i closed every body out and the stress from it all i became very sick because you no what stress does to our body.It sounds like you have got one heck of a good family.Something that may help you husband understand a little more is find some one going through the same thing or a support group thats how my wife found out what im going through.Our have him contact me .Some time its easyer to here whats going from a stranger.Me and my wife have 2 children together the other are from other women but they all call my wife mom and truly think of her as there mother.And like you i lost my job and had to get help from the state boy if that dont make you feel like crap.I will tell my wife to write to you or your husband and let him no what i go through if you would like that.What state are you guys from im from wichita kansas well i must go for now i hope to her from you again be well and put your faith in GOD and he will get you through it all and when your husband and kids get home hug them and give them a kiss and let them no how important they are to you and how much you love them.It seams to me GODS already put the right people in your life to help you.GOD BLESS WE WILL KEEP YOU IN OUR PRAYERS RALPH AND KRISTI PELKEY

[Rajjpuut]

Hello,


I really feel for you.

Obviously, more than one doctor's opinion is called for here. To illustrate that point and a few other truths, before I get back directly to MS, let me tell you a recent sad story: my father just died three days ago in a nursing home a few months before his 88th birthday. He had been there for less than six months because his Alzheimer's had progressed, albeit slowly, to the point where he could no longer be kept at home and cared for by my sister, brother and me. He had first shown symptoms roughly eleven years ago and we'd been watching over the old boy all that time. His health for his age and condition was very good. However, he willfully began refusing the vast majority of exercise we'd suggested for him (he'd done them for about eight-plus years) first starting roughly 20 months ago and then his condition began to deteriorate far more rapidly until we made the painful decision to put him in a home.

Dad actually thrived in the nursing home. In the Alzheimer's unit he made friends and even took on a lover (a 64-year old ex-CEO whose condition had hit her in the prime of her mental powers and immediately ruined her life) to the scandal of the nurses and staff at the home. However, he later was diagnosed with bronchitis. To make a long story short, his doctors treated him hyper-aggressively with antibiotics and killed the good bacteria in his gastro-intestinal tract so much so that he developed dysentery and a "c. diff" infection (bad bacteria that thrive when all the good ones are killed off) and had to go to a hospital. They's also had him on PPI's, and statins at the home which both have as one of their side effects "c. diff" infections.

I took him some kefir (if you think of unadulterated old-fashioned yogurt as supplying three weak cultures for the GI tract's health -- Kefir hits the GI tract with eleven far more powerful cultures) in the hospital. Dad was soon back in the home and my siblings and I gave him Kefir each time we visited. However, within two weeks, Dad wound up back in the hospital, then back to the home, his dysentery had been cured for about ten days, but he died there a few days ago. The doctors never once explained to me why they'd treated him with anti-biotics (they'd NOT done any testing for bacterial bronchitis and anit-biotics should never be used against purely viral infections) that so demoralized his GI tract. They also didn't even think of kefir. So what am I telling you?

1. Doctors are all too human. They make mistakes (two weeks ago I had to go back to my dermatologist's office for a free re-examination in order to prove that I'd never been subjected to the surgery his office was charging me for -- the physician's assistant who'd supposedly engineered the "surgery" <freezing off something, really> and the office manager were adamant that the treatment had occurred just a few weeks ago). Thankfully, this doctor is quite a reasonable guy and it all got straightened out. There are some medical men that are quite arrogant, unfortunately and those guys from ego or malpractice fear would never admit any patient could be more right than they.

2. The patient or his/her guardians need to learn what they can and be reasonably responsible for their own health. Sooner or later that means trusting a good doctor but only after you've done all the learning you can and asked all the intelligent questions you can and been satisfied with the answers received and the tone of the answers and quality of the person answering the questions.

3. MS is a quagmire right now. The currently fashionable theories are nihilistic, basically saying "we don't really understand this, and so we'll hide behind these ideas," specifically auto-immune causation. See my recent posting about "Questions and no response." In this confusing time, you need to be vigilant for yourself . . . .

4. A whole lot can be done by the patient for him/herself often, but not always. Here's a site reflecting wholistic thinking, you might be interested in: robertringer.com/status-quo.html which
tells an amazing story about a man that Nobel Prize winning Doctor Albert Schweitzer praised to high heaven: Max Gerson.

5. With a doctor's blessing, I encourage you to follow these guidelines below in so far as possible:

from a study done in 1976

The Seven Golden Rules of Health

1. Eliminate tobacco and drug products
2. Minimize* or cease alcohol use
3. Maintain a healthy normal weight
4. Eat a good breakfast daily
5. Eat 3-5 regular meals a day
6. Sleep 7-9 hours nightly
7. (starting slowly and gradually building up) Enjoy regular vigorous exercise

This study by UC Berkeley initially of vigorous extreme geriatric men and women
and then expanded to the rest of the populace, basically said that a man of 55
who followed 6-7 of these lifestyle recommendations had the same life expectancy
as a 20-year old man who followed 0-1 of them. They could, in effect, be expected
to die on the same day. Now that's quality of life for 35 extra years and that's longevity
in one simple package. < Also, buckle your seatbelt! : ) >

So for MS, get a second opinion. For MS think about wholistically caring for your own
body a la Gerson, especially ALL the diet regimen. For MS righteously
follow the 7 Golden Rules of health. Find a good doctor who treats you as a person and
respects your intelligence and takes time to explain things and help him/her with your
own treatment. I wish you the best.

Love,
Bob

* the equivalent of a small glass of wine or a single small can of beer daily

[armywifey]

well i was told i had fibro and then they thoght iit was MS and come to find out i DONT HAVE EITHER! I have a very serious condition that CAN kill me. It is called Syringomyelia. Basicly I have a cyst or tumor inside my spinal cord in my neck. With my PMC saying it was all in my head. and taking so long to do any tests. I will know always have to walk with assistance, I am no longer able to drive. I I shake all the time. Have memory loss. Vertigo. And alot of pain. And i have to have a major surgery on my neck to ty to drain the cyst. Even if they do drain it i will never get back what i have lost. The nerve damage is perm. This thing in my neck is damaging my spinal cord from the inside out. I cant be alone because I do more damage everytime i fall. which i do alot. So i am a 35 year old that has to have a babysitter 24/7. My husband is having a really hard time with this. He is scared because of the surgery. And I am not sure he can handle my being perm disabled and having to use canes, or a walker, or a wheelchair for the rest of my life. When i am in alot of pain it hurts him to see me that way. And I am in constant pain. So now i am worried that this is going to end my marriage as well as take my life from me. Never being able to walk on my own again, etc. They found the cyst on an MRI And alot of doctors have no clue what it even is or what to do about it. It is rare. and more common in men then women.
GL to all
Armywifey