Yesterday, Neuro called with last MRI results. Multiple lesions in the frontal lobe. Everything I am seeing is really freaking me out, as I have been on this downhill slide for a couple of years now, but did not know why......got MS '01...lost everything from the neck down, worked hard, PT & OT 3 months, to learn how to walk again, then ten attacks in ten mos, back to work FT, worked FT all the way through, with IV heplocks , etc., and now, this has caused me to lose my job of 15 years, the replacement job, and now the replacement for that job on Friday. Now, I know why. Advice?
Suz, I sure wish I had some advice for you, but I can tell you that you have come to the right place. This is a wonderful community of caring, informed people, and we're glad you've joined us. I will pray for you, as will many of us, I am sure. We'd appreciate it if you'd do likewise on our behalf. Others will likely chime in here in a short while, possibly with some helpful advice.
Favorite topic for us still in limbo; What did it take to clinch your diagnosis, and how long did you wait?
I'm so sorry about losing your job! I don't know what the details are concerning your symptoms or anything about your job, but I wonder if you should be protected from the ADA laws. If you're being fired because of your disability, something isn't sounding right.
I bet you're scared after going what you went through with the attacks years ago that took that long to get back on your feet again. I feel for you! There are more knowledgeable people than myself with MS, so if I'm wrong I hope someone corrects me; however, from what I understand is that the first year/attack usually is the worst. Perhaps, this attack won't be as bad (fingers crossed). Are you taking any DMDs? Maybe a good solid treatment of steroids will help put this attack at bay.
I have lesions in the frontal lobe. Do you find cognitive functioning a problem? I've had some really embarrasing moments as a result. I'm doing much better now. I think it is either the Copaxone or the Provigil. The Provigil has been a life saver for me. It has not only helped with the fatigue but with the ADD-like symptoms and fatigue.
Wow you have been through the ringer!!! I am so sorry for your suffering.
The frontal lobe is the personality & cognitive function area. I have several lesions there and they made the biggest impact on my life. I didn't think life would ever be ok again or that I would learn to cope.
I have started new meds including numenda for cognition and see a wonderful neuro-psych who helps me to come up with ways to do things different then "normal people" to make up for my brain wiring problems. My recent memory testing showed HUGE improvement from 2 years ago and life is nowhere near as dark as it was.
Don't give up - you have been through so much and you will make it through this.
Maybe if you share exactly what your new symptoms are someone can identify and let you know what got them through.
Wow, have you been on a vertical fall and climb!!! no, i have no advice sorry to say, but the guru's here sure will be able to share and listen. i'm in awe of your perseverance, keep fighting the good fight!
Thanks so much Erin for your response, and for just 'being there' in support.
Yeah this MS stuff has been fun. NOT!! I also have Crohn's Disease (1998) and Asthma (1981), and I always say I would trade TEN CROHN'S DISEASES for this one rotten MS. The thing about MS is....you LOOK SO GOOD, and it is a fallacy. It is a lie. the way one APPEARS is not the way they ARE, especially when the mind is involved.
Erin, I have recently been put on Effexor, and it is helping me not cry so much, but the despair I feel is palpable.
MS has taken my life away from me, and we've almost lost the house, as well. I can no longer make the money to pay for it since the lesions to my right temporal lobe appeared in 2006. These new ones on the frontal lobe, they are just messing with my stability in a huge way. I just want to stop draining everyone and everything. I feel like a total waste of space these days.
May I ask if you have MS, as well, or are your lesions from another sinister avenue?
sorry for errors, if applicable, and be well, Erin, be well.
The course of this MS has been devastating. I was on Copaxone from 2001 til 2006, but the lesions kept coming, interfering with my work, my ability to multi-task, have a memory of any kind, etc. I was a Paralegal commanding a good salary, and the firm I was at let me go almost one year ago.7-15-08, and I may have had the opportunity to sue, based upon the ADA Guidelines, but I have neither the inclination or the stamina to fight these powerhouses. For what, for money? I HATE MONEY! THE BANE OF OUR EXISTENCE!!
I hope I answered your questions appropriately. I DO get distracted. The bottom line is YES, my cognitive issues have been present since 2006, and collectively they have ruined my life.
I hope you are doing better than I in that regard, and keep after yourself, take the shots and pray you do not get more lesions. I have so many, it's frightening. The best of luck to you, Deb, and thank you for responding.
In answer to your question, it is complicated, but essentially, the MRI with contrast was the diagnosis.
I was admitted into the hospital, as I had a very atypical situation, in that I lost everything from the neck down.........I could not walk, write or wipe my behind. SO, no one knew what happened, but, they thought it could have been one of FIVE diseases. I am sure you have heard, and I explain ad infinitum to EVERYONE, it could have been Lupus, Lyme Disease, Vasculitis, MS, or a vitamin B12 Deficiency, which is what they thought it was, as I have Crohn's Disease, but it was not, and since then multitudes of lesions have been found, and ten attacks, ten months later, and being told I would be in a wheelchair, I said NO, went through 3 mos of OT and PT to learn how to walk and write again, then went BACK to work, and kept working until I was laid off 7-15-08.
Well, that's my story. It's not a good story, and it was not and IS not fun, but it's mine and I own it.
I am on Betaseron now. Lost health insurance in 2008, so I was on it from 8-2006 to 7-08, then nothing until MassHealth kicked in this June. That lapse in coverage and treatment resulted in the multitude of new lesions, I guess. I hope that responds to your question about DMDs, I don't know what DMDs are, unless they are dentists. God knows, I fave had enough intravenous Sulomedrol over the years to have me fear my hips will be nothing but swiss cheese rather than bones, due to the necrosis (death of the bones) of said hips.....after all the steroids.
Hey, once again, welcome. Nice to see someone besides me uses a little Latin here & there (though don't be surprised if I throw in a Greek or Hebrew term once in a while).
Hey, you were diagnosed in '01? Maybe it's since then that lazy neuros have begun to blame everything not on the five diseases you list, but on MIGRAINE, which can't be proven or disproven. The only things I am sure I don't have are b12 deficiency and Sjogren's.
Do you have a recent sed rate test? Just curious; mine keep coming back low, which surprises me.
You have certainly been through the wringer with all of your trials with Crohns and MS - wow! The double-whammy of two auto-immune diseases is unfair, but then again even having one is unfair! :-)
DMD's = disease modifying drugs. We tend to write a lot in shorthand around here because we get tired of typing the same things over and over.
As for errors - forget it! I don't even try most of the time to get it right (and I work by day in a university English dept). We understand the intention of every word, whether its spelled right or gramatically correct.
This is a wonderful community of very compassionate MS consumeers- some with dx, many looking for answers, and a few care givers thrown in for a nice balance. I hope you will find the support we all need here within this group. In my opinion, this is a veery special place, and you can question, rant, share the most intimate details and thoughts without judgement ....
Lulu is absolutely correct about this forum, and I hope to see you around. I check in here for a while, then I go MIA when I get busy. However, my friends here are just a keyboard away when I'm looking for support and opinions. It's nice to not worry my family about things and just talk with people that know exactly what you're going through.
My physical symptoms are much better since I started the Copaxone, but like you I've been experiencing more problems with my memory, recalling words, etc. Today, in fact I'm thinking I might even be experiencing a relapse. It's been a gradual decline for a week or so. Today it's really bad--I'm asking my husband for words for things that used to just pop right (MIA, the names of prominent political people, etc.). I find that I'm stopping in mid-sentence and forget what I just said, and I cannot comprehend conversations. It's horrible! And the icky, bone-rotting tiredness that I'm experiencing . . . I know that Provigil helps me, and my doctor told me that I can take a whole pill, so I'm going to try a whole pill to see if it helps!
Anyway, I can empathize with you. My biggest fear is to lose my job over cognitive issues. It must have been a really dark point in your life . . . How did you ever handle it? MS stinks to high heaven (have you heard that saying?)! Have you tried anything for helping your cognitive issues?
I know I spent most of my reply on my experience, and I apologize. I just emphathize with you completely!
PS Everyone looks right past typos, and goes to the heart of the message. Actually, I never notice them.
Wow you have Chrone's disease too?!!! I just found out last week that my GI thinks that I have it. I have some more test to do over the next two weeks to confirm or if I'm lucky rule out.
I would agree that MS trumps Chrone's any day. What a roller coaster and usually not a fun one!!!!!
I take Cymbalta for depression and jsut recently had to ask for them to up the dose. There is nothing wrong with being sad, angry and all of the rest that Lulu said. The important thing is that we reach out to the doctors for help in the form of meds or therapy and friends or whomever we can for emotional and other help.
You ARE NOT a drain on the world unless you give up the fight!!!! Even when it all seems hopeless we have a good minute, hour or maybe a full day and so we live to keep fighting and hoping that the good times increase and the struggle gets lighter.
You can help others just by sharing your sorrow or stories so that when they/we are feeling at our lowest you might be the one lifting us up.
I have PPMS and suffer from cognitive issues, reduced processing speed, hence the reason I had to leave my job. I have difficulty remembering what I was doing so I never seem to finish what I was doing if I get distracted. I have about 12 things going at the same time. My neuro just started me on AdderallXR which is an ADD med to try and keep me focused on a task long enough to complete. You should also check into applying for Social Security Disability who has a ticket to work program which helps disabeled people back to work. check out the social security website I think it tells you all about it. Also you should be receiving some type of benefits.
You DESCRIBED it PERFECTLY!!! I think I am PPMS, as well, especially based upon my chain of events, but I have not had that official diagnosis.
Three people have mentioned ADDERALXR. It seems to be the medicine to seek. I am CURRENTLY on EFFEXOR XR, and while it is working, nothing can take away the cognitive symptomotology I am left with.
I applied for Social Security on 5-30-09, after leaving the replacement job to the job I was at for 15 years that I was 'laid off' from on 7-15-08.
And that was only after the right temporal lob lesions of 2006. Now with the enormous amount of freaking frontal lesions discovered at the MRI on last TUESDAY, no matter how you slice it, I am just screwed.
Thanks so much for your response. Good luck to you, now nd into the future.
THANK YOU for telling me what DMDs are/were, I had NO CLUE!
I am familiar with most 'computerspeak', but did not hear of this one, so the translation is very much appreciated. I generally do not speak with anyone about MS OR Crohn's and very rarely asthma, so I guess I have an excuse. :0
And Lulu: Thank you for your kind words and understanding and yes I will see you here every so often, to be certain. Perhaps more often than that.
I was just positively diagnosed yesterday. 11 months after I was let go from my job because I suffer from migraines and asked to be able to come in late (8:30 as opposed to 8:00) on days i woke with a migraine - I usually was the last one to leave the department well into the evening (7:30 -9 or so) and had seniority over all the other attorneys except for two VPs. When I asked to go on FMLA for two weeks because I was exhausted, I was put on administrative leave, investigated for use of my company charge card and then laid off. When I challenged them on violation of the ADA, they came up with a bunch of bogus (really reaching) issues - it just wasn't worth the fight. Unfortunately that's the HR battle we face.
So, yesterday, I saw the results of my latest MRI and found out that basically 1/4 of my brain is asleep (totally inactive) and the leasons have started to appear in other areas. I've had migraines, memory issues and aphasia because of a closed head injury for over 20 years - those I can deal with - and when my Neuro said 6 months ago - we need to consider MS - I totally blew him off. Now I've seen the change in the MRI and it is really scary - I don't know what to expect or how bad it will get. I need a "MS for Dummies" guide book to tell me where we go from here.
I can ***** all I want about the exhaustion, the fact that I haven't gotten a damn thing done in the last year because I am too bone tired to get out bed on some days, the continuing migraines, the increasing issues with aphasia, the itching (does anybody else have that - my god it is making me nuts! it is torture, especially at night) the muscle aches and fatigue, but I keep waiting to wake up and stop feeling like I have the flue! I'm tired of this - I'm ready to be done already!
hi I was diagnosed in 2007...I had no symptoms until 2015...I had an exacerbation! so now I have lesions on my spine as I didn't have before...new lesions on my brain..memory problems, the itching, the overwhelming fatigue...was on Copaxon in 2008 and got off therapy completely. I guess I was in denial. I felt as if I was missed diagnosed. Also I had very little knowledge of the disease because when I tried to rad up on it and it's symptoms I was like I don't have/feel any of this...but now I do and it's absolutely terrible. And the frontal brain lesions makes you emotionless. And most days I feel just that...the lesions on my spine interferes with my walking exercising...just my movement all together...and I don't care how much I do or don't eat I never loose or gain weight! I have gained about 40lbs since the steroids last year!! I have know energy to work out...please help!!
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