I am still waiting for my appt with the 'miracle dr' on June 4. I am feeling soooo crappy. I just do not seem to have the stamina to perform my job. It is hard to work every day when your body feels like you just ran a marathon and my keyboard typing feels like I am moving through molasses. I am wondering what PPMS looks like. I've seen the charts but they never have a timeline on them. I've been keeping my own chart of how I am feeling and it kind of does not fall into any category. I am worried that since I just keep getting worse and never get better (will be level for a few weeks) that I have PPMS that is not as treatable. From the info I have seen on the site, it does not seem as though I really have any attacks. I have little incidents like not being able to walk but only for 3 hours and I think an attack has to be 24 hours. Now mind you, I have not been dx'd yet, I know I am borrowing trouble and I should not be. I just have nothing to compare my symptoms to and I would like to know if it looks like it could be a RR type MS because I would really love to have 1 week of feeling better some day instead of the same or worse.
This board has been wonderful for me. Thanks so much to everyone on here for your honesty and information!
Deb
Deb- you are really freaking. Reading your post- its going 10,000 mph! Slow down, relax and lets try to think this through.
First of all, it is EXTREMELY unlikely that you have primary progressive MS. Esepcially not having been dx yet with MS. Uusally Primary Progessive occurs in less than 10% of people, and those people have suffered with MS for YEARS before it progresses to this stage.
Self Diagnosis is a very dangerous thing. People who know me on this board know that I preach against it all the time. You are a sterling result of what happens when you read too much and understand too little. Thats not a crack at you either. Let the doctors do their jobs....thats why they are doctors and we are patients. Once you start talking dx with your doctor- and you have some things to reference, then, and only then, talk to MS specialists. People who have it. People at the National or Local Ms society near you...do not talk to people with lupus, fybro and every other autoimmune disease which may or may not have a link or a similar symtom to MS. Its a shame that no one listens, but Im begging you- dont get yourself all upset when you have absolutely no idea what it is you are dealing with. Stress excaberates symtoms..worrying means stress!!
People with similar diseases, we can commiserate with. BUT, unless you have MS, there is absoulutely no reason to be talking about symtoms. ANOTHER thing you need to remember NO TWO MS cases are alike...MS is like a fingerprint, no two people have the same symtoms.
Lets take worse case scenario. You say you keep getting worse and not better...there might be an explanation which is that you have not been diagnosed with anything, therefore you are not being treated with anything..and you could be having a relapse, in which case you arent going to feel better until you either get treated with steroids, or start treating the symtoms...remember, too, MS is a progressive disease. There is no cure. You will never "treat" this disease, only the symtoms....MS drugs, are there to help slow down the progression of the disease, and to minimize legions on the MRI. Im on one of them (rebif) and it is working for me, however I still have terrible days- the symtoms I had which took me to the ER and got me a MS diagnosis never went away..and Ill never be the way I was a year ago...however, if I never get worse, Ill be grateful!
Slow down and try to relax. Get lots of rest. Stay really hydrated. Rmember that all of us who do have MS are suffering right now due to the weather changes- you might be feeling those affects too and most of all realize that you do NOT get MS overnight. Youve had it for months or probably years...waiting till June for your doctors appt is harder to say then it is to do....nothing is going to change that day either...if you do have MS, and you dont have to go through 10 more tests first, Ill be surprised...if you do NOT have MS, youre going to go thru those same tests to rule out other things...get the picture?? Nothing happens overnight with this.
Buddy- I feel for you. Deeply and emotionally. I was there once. I know how terrified you are...but honestly, you sound manic, and I will do anything I can for you to make you stop and breathe. See the whole picture...know that you really are "borrowing trouble" by reading too much. Try not to. Really...and if you really think you need support beyond this board- call the National MS society and they will direct you to a local group where you can share. Were here for you...but Im worried about your mental health more than anything right now...MS - We'll deal with that if and when you need to!
Hugs,
Nikki
Thanks for the response. I did not think I was freaking at all but it is interesting that I sounded like it so I guess I am! I admit I am having a really hard day at work today. I know what you are saying about tons of tests and doctors- been there already. I am being seen by a neuro doctor in Boston in June who gets all the 'unsolvable' cases. Hopefuly, it is something that they can treat and it will go away. I do have some dr notes that say possible atypical MS and at the progression of symptoms, and the fact that I am finding working hard after only 8 months (I never had any previous symptoms) worries me. As you say, it seems like if it is MS, the web info seems to indicate YEARS before it should interfere with work. You are right- I have a hard time knowing what to make of all the different info on the web which is why I love this board. Thanks for calming me down! And I must say you are quite the inspiration with all you have been able to accomplish. I think actually that has made me freak a little too because I cannot even get through an 8 hour day and here you are working a FT job, getting a degree from an Ivy League U with superior grades and helping all us worried people on this board! You are my hero!
hi Deb. I dont want to be your hero. An inspiration, maybe...but not a hero. I had to give up alot in order to do what I did. I totally sacraficed my family and friends, other than my husband. Made the decision not to have kids- forever- and spent 20 hours a day trying not to think about MS and instead think about my future....how can I have a future if I have MS went thru my mind ten times a day. I decided that I could find a way...and the first step was proving to myself that I could graduate, keep my marriage intact and concentrate on getting healthy. THere was a time when I couldnt work an 8 hour day either..
Believe it or not, part of why you are so drained is stress.....once you start getting answers, and on a program, youll start to have more energy. I also attribute feeling better to being on Rebif for 8+ months. It did give me back a semblance of having some power, not being powerless. It also increased my energy level, once I got thru the initial bad period of getting used to the medicine.
You are going to be fine. And, yah, you sound pretty manic, but you are not alone...and this too, will pass. You get to the point, eventually where you stop projecting and worrying, and simply being glad for each day that you get thru.
Hey, if you really are having that much trouble staying awake, there are many drugs, some which are used for Narcoloepsy, which MSers are having huge success with- making them more alert, and less fatigued. You should mention this to your doc. Besides that, spend more time horizontal (as in asleep) and really try to get 15 minutes of exercise in a day....even if it is taking the dog for a walk, or walking around the block...dont do exercise which is hard on your body- just do something to get the endorphins pumping. Youll see a difference in your energy level...but nothing strenuous. No weight training..simple, moving about for now...ok?
Thanks again Nikki- you give me hope that I will feel better some day. And you reminded me that I went to a holistic health doc and she did an adrenylin test on me. Turns out I do not have very much at any time of the day- way below 'normal'! She said it could not explqain my symptoms but it would explain why I feel so bowled over by them. That is also why I must be wiped out. I never thought what I was feeling was fatigue- I thought fatigue meant tired and I do not feel tired, I just feel physically incapable (drained, as you said). I used to swim 3 days a week at 5am but I stopped when I could not swim the length of the pool without stopping anymore. The hollistic doc gave me some pills to boost my adrenylin but I have been afraid to take them with everything else going on. I ordered a yoga CD last night to try and compensate for not swimming anymore.
Thanks again!
what does Primary Progressive look like? 
Linear Mode
