Recently told i most likely have MS

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ebarb
Regular Member


Date Joined Oct 2007
Total Posts : 23
   Posted 10/25/2007 1:16 AM (GMT -6)   
Hi everyone!  I have been seeing a neurologist for a few months because of severe nerve pains, numbness, pins and needles, and my toes feeling really cold.  The doctor did an MRI which showed white spots on my brain.  He said if it wasn't for my age he would say it was MS, but I'm too young.  He also did a nerve conduction test to test for carpel tunnel, which turned out negative.  I have been on Lyrica for a few months and it does help with my nerve pain in my ear, but not much else.  The last time I went to the doctor he said he didn't know what was wrong with me and he doubled my medicine and sent me off.  Well I did not find that acceptable.  I am a 24 year old mostly healthy female and I should not be having these problems, much less, just taking tons of meds that arent getting rid of them!  So I went to another doctor highly recomended by my mother in law.  This doctor spent over 30 minutes in the exam room with me discussing my symptoms, looking over test results, and asking me several questions.  She concluded that she thinks I have MS.  (I did not tell her that the neurologist ruled it out because of my age, I wanted to see what her opinion was.)  I am going to see a neurologist who specializes in MS, but could not get an appointment for a month!  He is out of office for the next few weeks.  I am just not sure what I should be doing.  Should I be following diet restrictions I have read for MS?  Should I tell anyone besides my family?  Should I tell my boss?  I am a second grade teacher.  I don't know if I should mention it to the principal now or wait until after I see the specialist.  I am still having trouble with nerve pain, numbness, fatigue, etc.  I have read that accupuncture can help with these symptoms.  Has anyone tried it? 
 
I am scared to find out what the doctor will say, but my gut feeling is that the specialist is going to run more tests and not say anything when I go.  I am married and we have a 6 year old daughter.
 
Any suggestions or input is greatly appreciated!
 
Thank you!

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 10/25/2007 5:30 AM (GMT -6)   
ebarb said...
Hi everyone!  I have been seeing a neurologist for a few months because of severe nerve pains, numbness, pins and needles, and my toes feeling really cold.  The doctor did an MRI which showed white spots on my brain.  He said if it wasn't for my age he would say it was MS, but I'm too young.  He also did a nerve conduction test to test for carpel tunnel, which turned out negative.  I have been on Lyrica for a few months and it does help with my nerve pain in my ear, but not much else.  The last time I went to the doctor he said he didn't know what was wrong with me and he doubled my medicine and sent me off.  Well I did not find that acceptable.  I am a 24 year old mostly healthy female and I should not be having these problems, much less, just taking tons of meds that arent getting rid of them!  So I went to another doctor highly recomended by my mother in law.  This doctor spent over 30 minutes in the exam room with me discussing my symptoms, looking over test results, and asking me several questions.  She concluded that she thinks I have MS.  (I did not tell her that the neurologist ruled it out because of my age, I wanted to see what her opinion was.)  I am going to see a neurologist who specializes in MS, but could not get an appointment for a month!  He is out of office for the next few weeks.  I am just not sure what I should be doing.  Should I be following diet restrictions I have read for MS?  Should I tell anyone besides my family?  Should I tell my boss?  I am a second grade teacher.  I don't know if I should mention it to the principal now or wait until after I see the specialist.  I am still having trouble with nerve pain, numbness, fatigue, etc.  I have read that accupuncture can help with these symptoms.  Has anyone tried it? 
 
I am scared to find out what the doctor will say, but my gut feeling is that the specialist is going to run more tests and not say anything when I go.  I am married and we have a 6 year old daughter.
 
Any suggestions or input is greatly appreciated!
 
Thank you!
I am very sorry that you have all these problems.  I must say I don't understand the first neuro's comments at all -- that "if it wasn't for your age you had MS"...
MS commonly occurs in people between the ages of 20 and 45 ...so unfortunately you are well within that range.  I'm blad you're seeing another doctor. Given the symptoms you describe and the "white spots" -- lesions -- that appear in the MRI, you may decide it's not worth going to yet another neuro with the most recent one, and get started on treatment for the MS.  If I were in your position I'd be back in front of the doctor your mother in law recommended and saying something like, "OK, it's MS. Now what? Which drugs do you recommend, can you help me with my symptoms, where do I go from here?" I think it's important to get on to one of the disease-modifying drugs (Avonex, Betaseron, Copaxone, or Rebif), as soon as possible, and presumably your doctor would work with you to figure out which one might best suit your situatiaon.
If you spend too much time on the internet you'll find all SORTS of "treatments", "cures" and "remedies" for MS. Some of them are helpful, most are not.  While there is some evidence, for example, that the Swank diet is helpful, it's not significantly so, and can be a very challenging diet to undertake. Acupuncture may help with some pain  or other symptom issues, but isn't always accepted or paid for by conventional insurance.
As for who to tell -- if your symptoms are evident to outsiders, then -- until you and your doctor decide for certain that you have MS -- you probably just want to mention something like, "I'm being tested for some neurological problem..." and offer no more.  Once you've been diagnosed..and are comfortable with the diagnosis..then you'd need to decide just how much you need to disclose.  Employers aren't thrilled to learn that an employee has a chronic illness, and it can have ramifications on your job.
In the meantime, you might want to go to the National MS Society webpage -- www.nmss.org and start reading there to get a main-stream position about MS, related treatments, expectations, and there is even a section there on how to talk to your child and other family about what might be happening with you.
 
And don't hesitate to come back here with questions.  While we're not doctors and can't diagnose you, many of us have had MS for awhile, and can offer our personal experiences.

...I am not a doctor, nor health professional, and don't pretend to be one, here.....


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 10/25/2007 5:32 AM (GMT -6)   
I meant to say this, too: The "tons of medicines" you're taking -- they indeed may not ever "get rid" of the symptoms, whether you have MS or not, as most neurological symptoms are such that they won't be gone..just diminished, or relieved to a more comfortable level. If indeed you have MS you may always experience some numbness, tingling, nerve pain, etc.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3518
   Posted 10/25/2007 9:11 AM (GMT -6)   

Ebarb,

I see that Uppitycats has given you some excellent advice.  People of ALL ages can be diagnosed with MS (including children)  but the most common age group is 20 to 40 years.  I was past 40 when I got my diagnosis and no one used that to question what my other tests and symptoms pointed to.  I am so glad you went for a second opinion and are considering a third.  You are on the road to some answers.  We are here to support you in that search .  Certainly ask as many questions as you may have.  Good luck

Love and prayers,

 



Gretchen
Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
Elmer Diktonius
 
 
 


ebarb
Regular Member


Date Joined Oct 2007
Total Posts : 23
   Posted 10/25/2007 9:47 AM (GMT -6)   
Thank you for your responses!

I think maybe it was a little confusing when I was talking about the doctors. The first one I saw was a Neurologist, then the one my mother in law recommended is actually an internal medicine doctor (very knowledgeable and actually spends time with her patients!) and she gave me the referral to a Neurologist that specializes in MS. But he is out of office for the next few weeks so I am going in late November.

The first doctor was very dismissive and didn't even want to listen when I was trying to tell him new things that were going wrong, like my arm decided to stop working or something and I couldn't hold the marker to write on the board in class! (I am a teacher) And in my medical records from him, he says he doesn't see anything wrong and after one more visit he is going to discharge me from his office! I was like woahhhhh! I knew right then that I needed to see someone else, whether or not it is MS.

How many times did you have to get MRIs before they could say whether or not it was MS? I told my husband I am pretty sure they will do at least a couple more before the doc will say either way.

It is just hard because I can't do anything for at least a month when I see the new neurologist.

So I am stuck here in limbo, not sure what to do. The internal med doc said that the new neurologist will change me from Lyrica to something else because it is not really working. And I have gained 10 pounds in 3 months! She gave me Ultram to help with the nerve pains. I took one yesterday and I was wide awake, I couldn't fall asleep until 3 am!

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 10/25/2007 11:04 AM (GMT -6)   
ebarb said...
Thank you for your responses!

I think maybe it was a little confusing when I was talking about the doctors. The first one I saw was a Neurologist, then the one my mother in law recommended is actually an internal medicine doctor (very knowledgeable and actually spends time with her patients!) and she gave me the referral to a Neurologist that specializes in MS. But he is out of office for the next few weeks so I am going in late November.

The first doctor was very dismissive and didn't even want to listen when I was trying to tell him new things that were going wrong, like my arm decided to stop working or something and I couldn't hold the marker to write on the board in class! (I am a teacher) And in my medical records from him, he says he doesn't see anything wrong and after one more visit he is going to discharge me from his office! I was like woahhhhh! I knew right then that I needed to see someone else, whether or not it is MS.

How many times did you have to get MRIs before they could say whether or not it was MS? I told my husband I am pretty sure they will do at least a couple more before the doc will say either way.

It is just hard because I can't do anything for at least a month when I see the new neurologist.

So I am stuck here in limbo, not sure what to do. The internal med doc said that the new neurologist will change me from Lyrica to something else because it is not really working. And I have gained 10 pounds in 3 months! She gave me Ultram to help with the nerve pains. I took one yesterday and I was wide awake, I couldn't fall asleep until 3 am!
Well, then -- if the internal medicine doctor is the one who referred you to the neuro specialist, then here's what I'd do:
Wait for the specialist appointment. (I know it's no consolation, but just a month's wait to see a specialist really is a very short amount of time! Some folks wait months and months!).  If the specialist confirms that it is MS, find out if the internal medicine doctor is willing to be your primary care physician. Mine, for example, takes care of ALL my health needs, including anything related to MS. If she needs to, she consults with a neuro on my behalf.  This saves me a lot of time (and money!), and the primary care doctor (who also happens to be an internal medicine doctor, in my case) knows anything related to my health situation, and can take care of it.
If the internal medicine doctor isn't willing to do that, then be sure that the neuro is willing. (Not all are. Some neuros just like to diagnose, then refer patients back to their primary care doctor.  In your case, though, it sounds like you had a good visit with her, and this might work well.)
As for additional MRI's: MRI's are diagnostic tools, not treatment tools, of course. So if the MRI is clear and the lesions are there, in areas that are suggestive of MS, it may not be the case that the new neuro sends you off for more MRI's.  On the other hand, some doctors only trust their radiologists and their MRI machines, so it may be that he'll have repeats done, just to be sure.
As for the Ultram: I'm not familiar with that drug, so this is a general statement: Many medicines need to be taken awhile, and as prescribed, before you can decide whether they're "working" or not, or if the side effects are minimal enough that you can manage them.  It may be that the wakefulness is a side effect of the Ultram that will diminish over time.  You should carefully read the label, or go to the Ultram website and see if that's a side effect and if there is anything there noted about it.
All you really can do right now is sit tight, wait for your specialist appointment, and be ready with questions for him.  To prepare, you want to write down all your symptoms, when they first started to occur, whether they've intensified or worsened over time, or lessened, whether there is any sort of pattern to them (like, do they worsen if you're overheated, or overtired; or after exercising; or...)
Start with the MOST troublesome, and work your way to the least troublesome (just in case you don't have time to get through your whole list, at least the worst will be there on top!). 
Take the list with you..and someone else who can help you take notes of what the doctor says, or suggests.  You'll be overwhelmed, both by the stress of the meeting and the information thrown at you, and it'll be good to have some back-up help.
Go to the National MS website and begin reading.  Make sure your symptoms seem to match what you're seeing there.  Reading there might help you figure out questions to ask, and be helpful when you talk with the doctor.
Some folks wait for months for doctor appointments, and sometimes YEARS to actually be diagnosed.  I hope this will go much more smoothly for you.

...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Rebaina
New Member


Date Joined Nov 2007
Total Posts : 5
   Posted 11/9/2007 11:12 PM (GMT -6)   

Hi.   I have never in my life visited a chat room, but I feel so compelled after reading your post that I joined this site as a chatter.    I want to say first that I have never been officially diagnosed with MS, but I have had a great majority of the symptoms listed on every MS website I could find.  The symptoms started almost 5 years ago and my GP suggested MS.  I had every symptom you've named and many, many more.  Of course, that scared the crap out of me and I saw doctors of every specialty at the time and though the MRI that I had almost 4 years ago didn't show lesions, from what I've read, it can take from 2-5 years for lesions to show up.  Then I was pregnant twice in the last four years so I didn't have symptoms during the pregnancies, as most people don't.   I would relapse after my pregnancies however.

 

I won't detail every step of my journey but I have been as sick as one can possibly be with symptoms.  Around January of this past year, I had a horrible spell and was in so much pain and dizzy with odd headaches and other nerve sensations that I thought I was terminally ill.  It was a horrible time, and during this time, I saw my GP three times and finally was scheduled to see a new neurologist and get an MRI in May.  At that time in February as I was waiting for my appointment, I began looking into natural methods.  I had found a doctor (PhD, doctor of naturopathy, certified herbalist, certified clinical nutritionist, etc.) for my mother-in-law who has cancer, but I began talking to her about my disease instead.  She told me that she could help me with the MS, and I thought she was crazy.  She told me that in 6 weeks, I would begin to feel better and then in 3 months, I would almost forget how sick I had been. That was unfathomable to me at the time!  She was so confident that I eventually felt like this was something I needed to try, and my husband was completely supportive.  I was scared to death that I wasn't going to be around for my kids (who are so young!) and husband and that my life was going downhill.  I was desperate, or I wouldn't have tried the program because I wasn't thrilled about investing money into myself.  HOWEVER, I have been on the program now for 9 months and am unbelievably better!!!!!!!!!!!!!!   I live a COMPLETELY normal life.   And you must understand, I was laying on the couch every evening unable to stand for very long and in significant pain all day having strange fainting and dizzy spells for the 2 months prior to beginning the program.   I am on a very strict diet and supplement regimen but this is the best I have felt in 5 years, and I just want everyone who has MS to know that there is help outside the drugs!  I was not going to go on drugs until I couldn't walk, because I am not a fan of side effects or potential future effects.  The plan I follow is completely natural and tailored to my body based on hair, blood, and saliva tests.  It involved hard work and dedication and planning because you can't eat at McDonald's every day, but it's worth it to live a normal life.  (And in the long run, it's much cheaper than the drugs and doctor bills you will be paying for!)    I would recommend my doctor to everyone out there with MS but I know she's not the only one who knows how to help MS patients.  Find a natural doctor in your area who works on the body from a "cellular level" and go for it!  DO NOT BELIEVE THAT THERE IS NO CURE FOR THIS.  I hope someone doesn't sensor my posting here because for some reason, the medical community won't look into this natural path.   Read about Mitt Romney's wife.  (He's a presidential candidate on the Republican ticket.)   She had severe MS and her MS "strangely" went into remission (which her doctor tells everyone is not normal and shouldn't be expected).  Well, guess what she did?  She does acupuncture, yoga, and natural cures with diet and supplements.  It's not a coincidence.  Please believe me, and help yourself.   I have nothing to gain from telling you lies and giving you false hope.  I just wish someone had told me about this 5 years ago so I could have avoided the fear and pain that I’ve had for several years.  My husband and kids have the wife and mom back that they deserve, and I thank God everyday for this miracle.  I truly believe that He has given me the strength to follow this plan, and I know He can do it for you too if you ask Him!

 

My prayers and hopes are with you for a speedy recovery!
 

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3518
   Posted 11/10/2007 8:13 AM (GMT -6)   

Rebaina,

I won't edit or delete your post as you have not broken any rules but I want you to know that I found your post completely and totally offensive.  You say you were as sick as any one could possibly be.......how could that be as you were never actually diagnosed with MS or anything else that you mention.  Try reading some of these posts.  You will see that there are many people on here that have been every bit as sick as you and most of them much sicker.  People here have an actual diagnosed disease with actual and severe damage to the myelin in their brains and spinal cord and you come on and spout that there is a cure????  Please!!!!!

I was hospitalized with vertigo so bad I couldn't walk.  That was the result of a large lesion on my cerebelum.  You do not CURE that with some herbs and diet.  I do treat my MS with diet, supplements and excercise and I see a very good neurologist.  I am doing the best I can.  It just completely unnerves me to have people like you tell me I can cure my MS.  As far as you know, you never had MS. 

Go to that natural doctor and get something for that horrble lack of empathy that you have.

 


Gretchen
Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
Elmer Diktonius
 
 
 


Rebaina
New Member


Date Joined Nov 2007
Total Posts : 5
   Posted 11/10/2007 3:15 PM (GMT -6)   

Gretchen,

I am so very sorry for the offense I caused you.  I don't understand the anger as I know my intentions and was just completely floored by your response.  I would like to first say that I never meant to imply that I was the sickest person ever.  I know that I am not that by any stretch of the imagination!  And please, I don't wish anyone to take it that way.  I know many of you have suffered much longer and much worse than me.   I only wrote the post because of my compassion and empathy for everyone on this site who is facing a life with a likely degenerative condition.  I knew what was ahead of me if my symptoms progressed and it scared me to death.  Whether mine was the worst or not, I was in a lot of pain and had spells so bad that I couldn't get off the couch or function normally.  

Another thing, as most of you probably know, MS can be diagnosed clinically even without an MRI showing scans, and it has been 4+ years since I had a scan.  However, my GP and a neurologist suggested that MS is what I appeared to have back 4+ years ago and future MRIs would confirm that.   I only didn't get one back in May because I was feeling so much better on the nutrition program, and the MRI was going to cost me $2000 out of pocket. 

I only wished to offer hope to others.  REAL hope.  I'm very sad that it causes offense that I suggest that you can get better without drugs.   It has been my experience that you can and that's all I meant to share.  I thought my doctor/nutritionist was as crazy as you think I am when I began the program so I understand your disbelief.   And I myself have been "watching my diet" and taking vitamins and exercising since I first had symptoms almost 5 years ago but what I did on my own was totally different than the plan I am following.  By going to a nutritionist, you can get real tests (blood, hair, saliva) that can reveal what your body specifically is lacking.     A neurologist is great, but they function primarily as  a medical practitioner and do not have knowledge of a lot of nutritional information such as I am talking about.   Being a doctor doesn't mean that they have all the answers... and I say this respectfully as I have MANY family members who are doctors and nurses.  They do not know the information (did not learn it in medical school) that I have learned about nutrition and cellular health.

If there was a great medicine for MS that cured it, I would not even be writing!  I'd have taken it already and gotten cured!  But since there's not and the medicines out there are in many ways not even desirable, I just wanted to offer some other advice.   Do both by all means--medical and natural!   I certainly am not against medical and know that many people benefit from the drugs offered for treatement.  My personal preference is just natural if possible.

Blessings to you all!


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 11/10/2007 4:44 PM (GMT -6)   
Rebaina, I'm really glad you went into remission, ...or whatever was ailing you went away on it's own, but indeed there is no cure for MS, a "naturist" is not by ANY stretch comparable to a licensed medical doctor, and while a bunch of herbs might make you feel better...and I'm glad it did for you!...they won't cure MS.
A nutritionist cannot cure any diseases...and if you were told that, the nutritionist should be charged with practicing medicine without a license.

I'm sure there must be an alternative "medicine" board somewhere here on this site where you'll be more welcomed.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Rebaina
New Member


Date Joined Nov 2007
Total Posts : 5
   Posted 11/10/2007 11:07 PM (GMT -6)   
Okay... I would love for someone who has been to a practitioner (Phd,CCN,CH,Doctor of naturopathy) such as I have, went through a program and experienced no results to please post something. For the few of you out there who are so angry at me for posting my experience--- Isn't is possible that there is something out there that you just don't know about? I mean.. I didn't know about it until a year ago and I wouldn't be mad at someone telling me about it even if I didn't believe them. So please... Give me a break here. :)

And the sarcastic comments about "herbs making me better" are unnecessary and inaccurate... and actually, I take no herbs on this program (unless they are mixed in some of my supplements and I don't know it) though I think they are useful for some conditions. Surprise you? It's not a little old lady making me potions and selling me something. Even if it's not your thing, don't judge something for someone else. The person who I meant to reach with this is "ebarb" and I hope she takes to heart what I've said. One thing is for sure... It will NOT hurt her to try if she's interested.

And just for your information (respectfully), my practitioner doesn't claim to "cure" disease. She claims to be able to help your body through diet and supplemenation (and other therapies possibly) to achieve health from a cellular level... by working with your body from the cell level. Your body regenerates cells every 90 to 120 days and that's why the first window of feeling better is around 3 months. It's totally different from a medical practitioner's approach and is not practicing medicine. She would probably be insulted by the suggestion. My particular practitioner actually works with 2 MDs in her town and they send patients to her when they don't have ideal means of therapy for the patient. They have seen such surprising results with her treatments that they are using her more and more. So the medical profession is more open to these ideas than the people who have insulted me. Watch Dr. Oz on Oprah sometimes. HE is awesome and has great respect (in his words) for people who look outside modern medicine for treatments to cancer and other disease. He himself believes in the value of many alternative treatments. So please don't make me out to be a weirdo.

Again, I hope this clears up any misunderstandings. I had NO IDEA what a can of worms I opened up but it's worth it if even one person can be open minded enough to seek out some additional treatments...

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 11/11/2007 12:07 AM (GMT -6)   

Hey Rebaina

I'm not dx'd nor do i use any type of supplement. Can't even remember my vitamins most days! I just wanted to jump in and let u know that we're glad u'r here and hope u'll find any support and infomation u may need. Of course any information u want to provide is great and we'd all love to learn more. I think the particuliar part of u'r original post that bothered some was the possibility that u may be saying ms is cureable when in fact it's not. In almost any circumstance, improved diet and vitamin intake can improve health conditions, but not cure or even radically alter in some diseases. As well, there is a bit of 'ancient history' of folks coming here and offering herbs or other 'remedies' as a way of treating ms as opposed to traditional medical therapies. Of course the decision to choose to take a shot over an alternative treatment is personal and we in no way intend to say u or anyone else can't come here and offer up information. But, the fear in saying it can treat and/or cure ms as an equal alternative is quite legitimate.  There is proof that ms therapy drugs help to slow and lessen the severity of ms over time...there has been no known proof of the like with alternative methods. No one intends to attack or otherwise limit u'r opinion, only to protect those who may come here and see ur's and other posts like it and decide that this site and the people here say u don't need to take medicine to treat ms.

Please know this as u'r posting and be aware that everyone here has done much research into ms (or has had it for several years) and would love nothing more than to find some way to transform their bodies into the whole, healthy bodies they had, so offering up any sort of cure or promise of renewing health is naturally going to be met with resistence. Take care and please do let us know how this treatment works for u!


rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


Rebaina
New Member


Date Joined Nov 2007
Total Posts : 5
   Posted 11/11/2007 12:25 AM (GMT -6)   
Thanks, Rhonda, for the response. I appreciate your welcome as I was wondering what I had just got myself in to. :) I don't care if anyone disagrees with me and posts their opinions but I was shocked at the anger. I'm a big girl though and I can take it. :)

You know... after reading my first post again, I realized that I said the word "cure" and I really didn't mean to do that. I meant to say "help", mostly because I imagined that some people would find the possibility of a "cure" unbelievable. So I do apologize for that. I honestly believe that your body can "heal" but perhaps if I had called it "remission", I may have not caused such offense. I wish I had. There are so many testimonials on the internet regarding people finding a lasting "remission" following natural methods that I can't believe that more people have not looked into that. I'm not the only "crazy" out there. :) I understand not seeking out "magic pill" fixes and wasting money on schemish (is that a word?) ideas but the idea of being under the care of a practitioner helping you to get your body healthy is not crazy or "out there" in my mind.

I know there is proof of help from some drugs and of course, it is a personal choice to use those, and I would never condemn someone's choice. And I've reviewed my postings, and I don't think I suggested that anyone go off medicine. I would never do that. I personally was at a place, however, that I was going to need to begin one of those drug therapies because my symptoms had gotten so severe, but after reading about the side effects of them, I personally wanted to look at other options first. So I was saying that I myself have not required drug therapy after beginning a nutritional program.

Thanks again for the welcome. :)

Rebaina
New Member


Date Joined Nov 2007
Total Posts : 5
   Posted 11/11/2007 12:44 AM (GMT -6)   
One more thing... you're right that there is not any official study showing that alternative therapies work, and that's why people don't always hear about them. But the important point about that is that there IS NO official study at all. It costs thousands and thousands of dollars to fund studies and it's not that easy to get them done. It's all about the money, and when money can be made to sell pharmaceuticals, of course they will fund the studies to show that they are effective. The best proof of alternative therapies is talking to people who have seriously undertaken them since we don't yet have official studies of them. And keep in mind that I have nothing to gain by giving this information... I am not recommending a practitioner or a particular supplement program.. I have a heart for others who suffer with this disease.

Right now, there is another MS patient who is seeing my practitioner. I spoke with her today. SHe is only 4 weeks into the program and following it very strictly, so hopefully in three months, I can get her to comment on her progress for better or worse. There is another MS patient at my church, and she is talking to me about my program because she has seen me go from being very ill to being completely normal.

Anyway... got to get to bed. Getting enough sleep is my biggest problem these days!

HeideBee
New Member


Date Joined Nov 2007
Total Posts : 4
   Posted 11/11/2007 10:26 AM (GMT -6)   
I just had my 25th birthday this week, and have been "watching" waiting for my symptoms to get worse before a diagnosis. I know how frustrating it can be! I've been through the EMG testing, the MRI, the ECC, the CT, and so on trying to treat about 10 "different conditions", with nothing working.
To add to the frustration, when the first nerve damage was found, in my forearms and right hand, I was pregnant, so there was only so much testing and physical therapy that could be done. I found TENS treatment to be helpful for the pain. After giving birth the legs were tested and found reduced conductivity, poor reflexes and sensation to heat and cold, freezing feet and toes, etc... The neurologist at the time said it "may not have clinical relevance because patient has delievered only 3 months ago". Now almost 5 years later things have gotten much worse. I wish I knew more at the time, I would have gone for a second opinion back then and maybe found some relief. Good for you for not taking one's opinion as Gospel truth!
The doctor I am seeing now is re-testing everything so she can see with her own eyes and compare the progression from 5 years ago. It's kind of odd how similar our stories are, my first test was for carpul tunnel, and also came back negative, but showed other nerve damage. I have a 4 year old daughter, but am going it alone.

mawk
New Member


Date Joined Jan 2008
Total Posts : 2
   Posted 1/3/2008 4:10 PM (GMT -6)   
Hi--I too am a second grade teacher that has ms.  I do not exactly advise you to tell your principal, unless you have a strong urge to do so.  It could backfire on you.  I do not think that they need to know, unless you want to share.  Now the other side of the coin is if you need to file for disability, your principal could tell disability that you never asked he/she for accomodations and that could count against you.  I understand how you feel about whether you should say something or not.  I have been there. If you need anymore help, let me know.  I have tried acupuncture twice.  I want to try it more to see if it helps.  The one thing that helped me wih pain was vitamin B12 shots.  From the first day I got a vitamin B12 shot, I have never had any more pain!!!  I would also do the swank diet.  It sure seems like it is starting to help me.  I would like to know how long it takes for the diet to really start working.  Hope to hear back,
Mawk

mawk
New Member


Date Joined Jan 2008
Total Posts : 2
   Posted 1/3/2008 5:11 PM (GMT -6)   
Rebaina, Wow am I glad I read your post.  I too believe in natural supplements to cure ms.  I am wondering what ones you take.  I am on a program now through my chiropractor, but maybe you are taking something I am not, that could additionally help me.  Do you do the  swank diet??  I have been on it since August.  I do see improvement, but I  want more.  I do hope you are out there still.  I am sorry you recieved some negative imput.  I too believe there is a cure out there and I will not stop until I find it.  I also put all my faith into God and I know I will get there.  I am so glad once again that I read your post.  Maybe sometime we could exchange info to continue to help us.  Let me know, Mawk.   

msmomof4
New Member


Date Joined Jan 2008
Total Posts : 14
   Posted 1/5/2008 4:16 PM (GMT -6)   
Ebarb, I just read your original post, and from the date you posted this in OCT. I was wondering if you had seen your new Neurologist, and If you havefound you do in fact have MS. I hope this finds you well, and weather its MS or something else, anything Neurological I think is stressful at first. Well..I have had MS for 6 years 'diagnosed'-Im sure I had it longer, But even now, It still can stressful. I too, have children. thirteen, 7 and twin 5 yrs olds. I have never mothered so many children without Ms, so Im not sure how easy it 'could' be. But I know when you feel so very tired, and cant hardly see the sun on some days, It really makes you appreciate the days you can. Not olnly do I have Ms, but I am also an amputee. That was from a car wreck at age 13...So when My leggs go out..its very difficlut to walk. I no longer go to amusement parks, except when I rent a wheelchair. I went a few years using Injections that were NOT for me. My symtoms never got any better. I would have an attack quite frequent,and When My Neuro would call me, he would say how are you? I would simply respond fine. But had I known what I know now,Listen to you body, If one therapy dosnt work, feel free to TELL you Dr. to please try another. Unfortunately I hadnt done well with Many injections, so I am Thankfully on tysabri. That one took alot of time and thought , and failure on previous meds to even get approved on, But now I am finding more and more days I get to enjoy the sunshine. Infact I Am just comming off steroids, should be off in 12 weeks, but I plan on taking a much needed Vacation to England--Im in cali. But a year ago, I was always so afraid that I would have an attack while abroad, I just wouldnt do it. Now that I have also learned that the relationship with Me and My neuro is crucial. I call him for evrything. I dont take anything that is prescribed to me by my primary UNLESS I run it by my neuro. So the fact your Dr. is sending you to specialist is fantastic.Important thing is to be sure its someone you feel absolutely comfortable with.I hope you were able to get the ansers you were looking for in here. My thoughts and Prayers will be with you!

HAPPY NEW YEARS!
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