Guest guest Posted August 30, 2005 Report Share Posted August 30, 2005 Hi Delaina, ) From what I've learned... MSers may have many things in common, yet MS does present itself in different ways for us. I don't have a dx. As far as I can remember, symptoms likely began about ten years ago. It was only about five years ago when I noticed more and more coming, and took note of how similar so much of it was to what I was learning through my Mother. She has an MS dx. Then, it was only this past autumn when I threw my chin up and headed for testing and a Neuro. That didn't go well and I'm still without a dx, though wasn't surprised in not getting a dx at this time. I know it takes some MSers many years to find their answers. I also know many face disappointment along the way. For what I've learned, MS fits me best. I suppose we stay happy with what we do have. The good days in between, the symptoms which don't last, the symptoms we do not face, the ability to overcome and adjust as our lives and bodies change. We can mourn the losses and the things we hate going on inside us, and we deserve to allow ourselves that. There are those who will fair better than you and those who will fair worse. Each of us has our own burdens and what we experience personally is huge. Thankfully, everyone here *gets* it and is wonderfully supportive. ) For me, for what IS happening at this time, there are physical changes I do not care for... but it's the mental stuff that bothers me the most. I used to love talking with people. Through email, letters and in person. I don't do this so well anymore, though have my brighter days (I think the last week or so has been good <g>). As much as I don't want to see it, I do find I'm avoiding people and situations more, simply because I don't come across as well as I'd like to. Even with my older children, I hate not having answers to questions they ask, or being able to take part in a conversation with them as I once could. For my younger children, I wonder if they'll know Mom was smart. <g> Cognitive Dysfunction doesn't MAKE me stupid, I just sound like it at times. <g> It's also hard not having a dx, though even with a dx I know I'd still doubt myself... my symptoms. How much are imagined, how many are something else entirely or do I make them greater than they are? How often do I learn of another's symptoms and realize, then or later, that I have something similar going on... how much of that am I putting onto myself, how mtuations more, simply because I don't come across as well as I'd like to. Even with my older children, I hate not having answers to questions they ask, or being able to take part in a conversation with them as I once could. For my younger children, I wonder if they'll know Mom was smart. <g> Cognitive Dysfunction doesn't MAKE me stupid, I just sound like it at times. <g> It's also hard not having a dx, though even with a dx I know I'd still doubt myself... my symptoms. How much are imagined, how many are something else entirely or do I make them greater than they are? How often do I learn of another's symptoms and realize, then or later, that I have something similar going on... how much of that am I putting onto myself, how much isn't *really* there. I also worry that without a dx, so much is without validation. I have and do learn from others. From my Mother, from friends here and elsewhere with MS. I learn through searching for answers for myself. Yet how valid is my input, my opinions, when I don't even have a dx? I find myself holding back for that reason, too. I am in my 30's and this is not *normal* stuff going on. I KNOW there is something amiss, though we can't find it on an MRI or in lab tests right now. It's not always easy to keep that chin up, but I sure try. Many times this group of people help. I hope you find the same! ) Challis hello. I am in pre-MS-diagnosis hell. In January 2002 I began to get tingling in my jaw and lips. My Dr sent me to a neurologist who did an MRI. He told me that I had evidence on demylienation, and to repeat the test in 6 months. Well in 6 months I moved across country. I scheduled a second MRI after I got settled in. I did a pregnancy test prior to my MRI, and SURPRISE! I was pregnant. After the preganancy, I got around to the follow up MRI in May of this year (it took several months to get the referrals straight, and the copies of the orignial test and records). Second doctor says yes, the lesions are suggesting MS< and to get a LP. I got a second opionion from USC, and she felt the signs were on the wall. she ordered blood tests to rule out vitamin deficienies that may mimic MS. The thing is, I have relatively few other symptoms. Lately I have been feeling that I am forgetful, I can't say the word of something I am thinking of, and sometimes I am just confused. Also I saw a small droop in my lips. It could be MS, or just stress. I am 38 years old, and I work as a school psychologist. The person I know who is diagnosed with MS had very significant symptoms, for a LLOONNGGG period of time. Should I just be happy that it has not progrssed like it can, and that they found it early enough to possibly slow progression with medication, or do I not have it at all? This is the limbo that is my life right now. What do others think? Thanks for your support. Delaina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2005 Report Share Posted August 30, 2005 Oh, Bill, I really had to laugh over you getting names mixed up and even calling your sons by the dogs' names. I understand that mix-up so well. For poor little Maya, I often start to call her by her older sister's name. "Jenna". I change it quick if I can and it usually sounds like "Jamaya". Somehow that's become a nickname for her... only it's Jambalaya now. <g> She gets Maya Maya Jambalaya, how does your garden grow. <g> Sometimes my boys are just "you!" or "whatever your name is". <g> Challis Hi DelainaWelcome to the discussion group the symptoms you talk about do go with MS. I have short term memory loss. When I was being diagnosed I told my neurologist I thought my short term memory was not like it use to be like he had an MRI done on me and found I had my MS. I have diabetes and he was thinking the trouble I was having was from my diabetes until I told him my memory trouble. I also will have trouble saying what I am thinking correctly. I have 2 boy's and I often get their name switched. I get a laugh from them. I have sometimes accidently called them my dogs name that is embarrasing. Heat is my biggest enemy right now I am having double vision and it is caused by the warm day's here in Indiana. I love warm day's so I hate that it effects my health when I am in it. I have used a walker ever since my MS hit me in Aug of 99. Here is some more info about my MS. About Me Bill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2005 Report Share Posted August 30, 2005 I personally take a slew of supplements...the ones Sharon just mentioned (Vitamin B Complex, Vitamin E & Bilberry , as well as Ginko (when I remember) 5-HTP, Sam-E, DHEA, Oil of Evening Primrose, Omega fish oil, Flaxseed oil, L-Carnetine, Bromelain, Kelp (I need somebody's Kelp, not just anybody's Kelp....), Cayenne, I also take Guggul and Fenugreek for diabetes. I also talked my Dr into giving me Actos as part of my diabetes regime, since it is also being studies for MS. I take 30 mg daily, as well as 500 Metformin, and my BG is totally under control and my MS is currently in remission. Something's working! ANd o, I do not take any of the CRAB meds. I found the side effects not worth the drug effect. Hugz!~*~Akiba~*~ Re: possible diagnosis Welcome Delaina: I know you will get some very thoughtful posts full of information... but I will briefly add my thoughts. An LP doesn't always tell the MS story. One of my neuros explained it like this: If you are in active attack the LP is positive. But if you are going into or out of an exacerbation then the LP may not be positive or may only be positive on one band. Forgetfulness and searching for the right word is certainly MS-like. The majority of members here have those symptoms. Some worse than others. I HATE it. I am an intelligent person and I am an educated person but I feel stupid when I can't come up with the word--over and over. Once in a while is one thing, you know? When I am tired it's much worse. I'll send a list of links in a separate email. Do you take any supplements? One of my neuros told me to take Vitamin B Complex and Vitamin E. My current neuro told me to take Bilberry for my eyes. He said Bilberry can keep an MSer from going blind. I take those supplements religiously. I figure if my neuros told me to take SUPPLEMENTS then I better do it. LOL I'm sure you know that not all cases of MS are the same. It's very different for each person. Some people are really disabled but many aren't. I know many MSers who have terrible fatigue and other invisible symptoms. People often think an MSer is fine because they "look so good". It doesn't all show! Sharon (MSersLife creator/owner) “One minute it's a giant cabbage and the next, ka-boom! You've got cole slaw all over you." V.R. , Palmer, Alaska, where Cabbages grow huge damrtinez wrote: hello. I am in pre-MS-diagnosis hell. In January 2002 I began to get tingling in my jaw and lips. My Dr sent me to a neurologist who did an MRI. He told me that I had evidence on demylienation, and to repeat the test in 6 months. Well in 6 months I moved across country. I scheduled a second MRI after I got settled in. I did a pregnancy test prior to my MRI, and SURPRISE! I was pregnant. After the preganancy, I got around to the follow up MRI in May of this year (it took several months to get the referrals straight, and the copies of the orignial test and records). Second doctor says yes, the lesions are suggesting MS< and to get a LP. I got a second opionion from USC, and she felt the signs were on the wall. she ordered blood tests to rule out vitamin deficienies that may mimic MS. The thing is, I have relatively few other symptoms. Lately I have been feeling that I am forgetful, I can't say the word of something I am thinking of, and sometimes I am just confused. Also I saw a small droop in my lips. It could be MS, or just stress. I am 38 years old, and I work as a school psychologist. The person I know who is diagnosed with MS had very significant symptoms, for a LLOONNGGG period of time. Should I just be happy that it has not progrssed like it can, and that they found it early enough to possibly slow progression with medication, or do I not have it at all? This is the limbo that is my life right now. What do others think? Thanks for your support. Delaina Sharon (MSersLife creator/owner) “One minute it's a giant cabbage and the next, ka-boom! You've got cole slaw all over you." V.R. , Palmer, Alaska, where Cabbages grow huge Start your day with Yahoo! - make it your home page No virus found in this incoming message.Checked by AVG Anti-Virus.Version: 7.0.344 / Virus Database: 267.10.17/84 - Release Date: 8/29/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2005 Report Share Posted August 30, 2005 Delaina, Diagnosis is oftentimes frustrating, time consuming and uncertain. Be at peace, if it is MS it can certainly be a problem at times. However, these times do pass and there is a lot that you can do to help yourself. MS is a very manageable circumstance most of the time. Go to www.copingandprevailing.com If you cannot afford the book send me your mailing address and I'll send it to you. Regards, Tom possible diagnosis > hello. I am in pre-MS-diagnosis hell. In January 2002 I began to get > tingling in my jaw > and lips. My Dr sent me to a neurologist who did an MRI. He told me that > I had evidence > on demylienation, and to repeat the test in 6 months. Well in 6 months I > moved across > country. I scheduled a second MRI after I got settled in. I did a > pregnancy test prior to my > MRI, and SURPRISE! I was pregnant. After the preganancy, I got around to > the follow up > MRI in May of this year (it took several months to get the referrals > straight, and the copies > of the orignial test and records). Second doctor says yes, the lesions > are suggesting MS< > and to get a LP. I got a second opionion from USC, and she felt the signs > were on the wall. > she ordered blood tests to rule out vitamin deficienies that may mimic MS. > The thing is, I > have relatively few other symptoms. Lately I have been feeling that I am > forgetful, I can't > say the word of something I am thinking of, and sometimes I am just > confused. Also I saw > a small droop in my lips. It could be MS, or just stress. I am 38 years > old, and I work as a > school psychologist. The person I know who is diagnosed with MS had very > significant > symptoms, for a LLOONNGGG period of time. Should I just be happy that it > has not > progrssed like it can, and that they found it early enough to possibly > slow progression > with medication, or do I not have it at all? This is the limbo that is my > life right now. What > do others think? Thanks for your support. > > Delaina > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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