Diagnosed after 13 year long battle! I'm mad!!!!!

By rucyrious

3 min read

It took 13 long grueling years for one doctor to finally take a chance on me. Started right after a gallbladder surgery. One month after. MRI showed brain lesions but un-specified. As the year went on the muscles in my legs would contract, knot up and waste away. Falling, leg tremors not even to mention pain. Every kind of medicine and diagnosis you could imagine that was thrown at me while MS was always on the table but, not likely. The accidents with bowel movements at work, falling down stairs, cold weather causing cement legs, you name it. Was called crazy, making this up, faking while all my active life was dwindling away. Raised two beautiful kids by myself, gym daily, worked full time, PTA, all kids sports activities plus going back to school full time while taking care of my house. All gone. To bedridden for nine years. Started the Copaxone, noticed right away no tiredness after a shower. Then Ampyra, WOW can walk distances.

Now I'm losing my mind. I need help! I haven't researched this yet because I'm afraid. Now diagnosed with melanoma. Crying daily, lol same time. Pain is horrible in legs. Will I ever get back my beautiful body again? When I over do it, it feels like I'm getting electricity going through my legs to the point of falling. Every five second zap. Shuffle my feet and then five seconds later another zap!!!! Now eyes are going crazy. Can't read for long because I feel like that kid in school that had those eyes that moved back in forth a mile a minute. What is this? Then memory issues WOW! repeating myself all the time, slurred words, walk like I'm drunk. Why???? There's that woman who probably is stoned drunk again! Really? I am so mad at 11 neurologists who knew in the back of their heads all along it was MS and did nothing. Now with all the damage done it can never be reversed they say! Do I have any legal recourse here? I was told if I was put on Copaxone which BTW does not cause damage, it stops future damage. WHY????? I'm a bag of bones now and all my leg muscles are gone. I'm young but look like I have a 90 yr old body!

Stress WOW....I can see how stress is triggering pain, episodes or whatever they are and now I'm realizing I am a burden to surrounding people. Not to mention all these years without being able to go to a dentist and was hit with a 30k estimate. Is there any help for this? Can't remember if I wrote this but also diagnosed with another double whammy melanoma. The worst kind. Now I'm being discriminated by dentist, other doctors because of the MS! Seriously?! It's bad enough you have this now your faulted for it. I wish to know if anyone else is suffering with extreme leg pain? Falling, memory loss, mood swings. Everything I've mentioned. My days are spent in my bed, I do get up every half hour to move. But, trips and appointments put me down for a day. Pain intensifies with activity. Does this happen to anyone else or am I nuts? Oh and the burning in my leg that happens not to mention back on an MRI table. Again was told no redness and no heat underneath the bed. What was that? Numbness in hands, come and go. Shaking uncontrollably which I know is due to stress. But PLEASE am I going nuts here?

-Debi

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joelle Member
I seem to share a lot of the same story. I was DX in 2006 after a total hysterectomy. I have had no luck with success in DMT yet I have tried both Copaxon and Aubagio. I have not tolerated either and I become septic w Copaxon and now liver and renal failure with Aubagio. I honestly believe that Aubagio was working right away and maybe even halted a exacerbation. But in less than 32 days I had not been able to tolerate the medication and am awaiting my NUERO to communicate after halting TX per his order. Although I am about willing to do mostly anything. I too cannot seem to rebound and have had mostly bad days than good. I have been on a catch-up and crash cycle for approx 2yrs. I have found myself rolling around on my floor in pain/muscle spacisit//laughing and crying/unable to to stand due to being to weak/ I found myself trying to calm all the racing thoughts and /sob to see that it was all a wicked cycle that I was not able to stop. I t seems to have slowed down,I am still trying record and document what is happening in my body, environmental ly,stress related,,dietary,exercise,natural resources, that I am benefitting from and not able tolerate at . I am hoping that with doing this that we will find some kind of "reset" bottom and that the medical staff will put together some pieces I do not understand. I am also mad because I feel that they could of shared some info about what MS could and is now doing to me and the quality of life factor could be reevaluated and educational and support could have been established before it has critically compromised my ability to even ask and accept help and stay stronger with diet /exercise before the muscle and bone wasted away and now it seems my entire mind cannot even communicate or comprehend or be aware of what is truly happening. My vision has become very bad and now I have had to have plugs put into tear ducts. I am rambling. I apologise but I wanted to say. I" I do believe that you 'are not alone'. I am comforted by reading and learning from this site that I am not crazy because of the sharing of input such as yours. Thank you
1. rucyrious Member
 Wow, thank you for sharing. You are not rambling. And I am so grateful that someone read my story. I'm right with you there on the floor crying, rocking due to the pain. These moods I just found out with the laughter and extreme crying could be physudo bulbar associated with MS, I will ask when I see my Neurologist in a couple of months. I do have a question did you loose all of your leg muscles? Are we able to get them back? I've been doing calve raises and the next day, 2 days was horrible with pain. My knees gave out to the point I collapsed. Still having issues with my left leg. That's the side that is the most damaged. I'm young but my body looks like a 90 yr old. I think that disorder that was brought to my attention by a nurse through shared solutions stated to me that this is a part of MS. That I should bring this to my docs attention. Maybe you can look it up as well. Shared solutions seem to be a good resource for information for me. Once I started the copaxone I noticed right away that my energy came back. It took to much just to have a conversation on the phone. Now I don't shut up. The ampyra is helping me with my gait but these are the only two I'm on at this point. Since both medications I do see a difference but I do not have any strength. Stress is a HUGE factor that I am noticing. My husband is literally stressing me out all the time. I feel like I'm such a burden and he's playing on this which I'm to the point of shaking all the time. I to have noticed a huge difference in my vision. Daily! I still am not educated on this disease and still not ready to do research. I'm really glad that you reached out! Thank you so much. Once I find out more about this new disorder I will update you as I'm sure your at your end of these moods as well. This winter here in NY is really a battle for me. This is the 1st winter being on the new meds and see how much this is kicking my butt! What is Augibio for? I never heard of this let alone any other meds for this disease? Are you taking pain meds for pain as well? I'm so so sorry you became Septic is no joke. My daughter works in an ER and I hear all the horror stories. It appears with our immune system being so low we are More susceptible to flus colds, and illnesses. I really wish I could do something about these doctors that just let me waste to nothing. Yep my mind, brain from where the lesions are have impaired all motor, comprehension, reasoning skills, memory loss, everything that has to do with our thinking ability. I'm sad for you as well but at the same time what you shared with me truly made me feel better. I hope you will stay in touch with me as I will keep you update on what I find out. My name is Debra and here is my email address if you feel like you need a friend. I know I sure do! Thank you kindly for your response. Dcyr1@nycap.rr.com -Debra
ms-diva-2 Member
You're not crazy and definitely not alone! I'm trying to learn about MS too. Everyone seem to have different symptoms. Yours seem a lot like mine. Constantly walking like I'm drunk. Sometime the pain so intense that it's hard to walk. It hurt to walk some days. I was diagnosed in October 2016. But I'm mad too! Because for 3 years all the problems I was reporting was MS. So now the body has deteriorated and it may never improve. All I can do now is be on medication to try to stop it from getting worst. Don't have many options for medication because I'm positive for JC Virus. Avonex has mess with my mobility a few times. But I'm still on it. I remember my neurologist saying do something to stop MS from getting worst or do nothing and get worst! I own so many shoes. And I do not think I will be able to ever walk in stiletto's ever again! I walk with a limp. If I have to walk for about 5 minutes, I have to use my cane. My hand's be numb. Weakness more so on one side than other. People seem not to understand. My vision has been horrible. My eyes run like I'm crying. SMH! We're all get through it!
1. rucyrious Member
 Thank you so much! I to am disabled more on my left side and as well walk like I'm drunk! My pain is centralized in my legs! The fact that they say we cannot get back what we lost I am so determined to prove them wrong. I have 13 yrs to catch up. I'm really sorry you too had to go through this! Have you ever been discriminated against by other doctors because of "our illness" I am finding this to be a common thing now. Just when we are dumped with this now we are given a hard time because of this. What gives here? I haven't left my house for 11 yrs only to doctors apt. And walking to I can only go short distances. I keep hearing about Canada's stem cell treatment but here in NY they say we are 10 yrs out. Not sure what that means but how will we ever pay for this? Getting funding is like pulling teeth. The more walking I do the more pain I endure. I see my Neurologist in a month and wonder if there is anything else besides the ampyra and copaxone I can ask for? My stress level is out of this world. Also I've been told the severe crying and burst of LOL is also a part of MS but what do you suggest to stop these moods? I am really desperate here and really appreciate all the feed back I can get. Thank you again for responding!!!! Cheers!!!!
ms-diva-2 Member
I don't feel necessarily discriminated against. It just that I do feel I'm treated differently in a sense like I am not going through all what I AM! Yesterday at my appointment I was taken off Avonex and now have to wait for Aubagio . My neurologist was more understanding of the difficulties I was having. My primary doctor don't get it to me! I don't think she realize how long I been dealing with it. It's a reason why I'm worst off now. No treatment for years because they couldn't figure me out! I too have heard of the stem cell but wondered if that would help if as an individual we have issues already. I don't understand it! But I know it must be a fortune too. Not sure if it's in Michigan. It was on the news last week. I get the mixed moods too where I don't know if I want to cry or laugh. It's medication for that too. I just don't want to take medicine for everything. I have enough prescription drugs as is. Good luck to you and all with our battle!
diane1952 Member
I am sooo sorry, all of you! I haven't been diagnosed yet. After 3rd MRI, flair hyperintensity is stable. I started walking like a drunk about 3-1/2-4 yrs. ago. I have OA and FMS. Had so much pain last night I wanted to die! I see a neuro on Mar. 24 and hope he doesn't cancel and reschedule like so many specialists here in Canada. I have memory loss, but don't know if it's just the fibro. I get electrical shocks through my legs too. Have numbness, tingling and pain in extremities, but also am per-diabetic and cheat only occasionally though. I also have Raynaud's, but also feel hot and painful in hands and fingers. I'm a a mess and sick and tired of not getting a diagnosis and some help. You are not alone! No matter where you live, there aren't enough specialists and some don't even know how to diagnose. At my wits end! Gentle hugs!