I just got back from the doctor and he was wonderful. I mean, really truly patient, kind and took a LONG time with me. He wants more tests run, but he does feel that the symptoms I exhibit "can be" indicative of MS along with the previous testing I've already had done. He doesn't want to give a Dx yet and I can understand that. I have definite muscle weakness in areas and neuropathy in both feet. He said my fibromyalgia diagnosis was most likely an attempt to shut me up and give me something when they wouldn't look for anything else. He seemed especially disgusted when I told him about my previous neuro visit where the doctor wouldn't exam me and told me it was all my weight. (which I've since lost)
I've had such bad doctors that it was a real pleasure to have such a good thourough one who LISTENED to me. And I really liked him and his staff and I think he's going to be able to give me answers and help me. He did suggest Cymbalta which I can't take because I had a HORRIBLE reaction to it previously. Then he suggested Neuronton, but said he wanted to wait before prescribing that. So I got nothing in the way of help at the present time except the promise that he would find me some answers. Which believe me, I am ecstatic about. He's done more in 1 hour than anyone's done in 4 years. And he gives me hope.
Now that said, I've sat here and cried for 15 min. after getting home. I don't even know why I'm crying. Isn't that pathetic. I've spent 4 years dealing with all these problems, been shunted to every known specialist, had all kinds of testing, proding and poking, been dismissed, been treated like an idiot and now that I finally feel we are getting somewhere, I have totally lost it. The only problem I do have is that I am having a MRI done next week, but he doesn't want to see me again until Sept. 12. I'm so frustrated, been on such a long journey that another 2 months just seems interminable to me. I had to wait 2 months to even see him the first time and now 2 more months. I want some answers and something done NOW. Is that too much to ask? My arms and hands are getting worse and frankly it scares me and it keeps me from being able to do much of anything. Amazingly enough, I don't have much trouble typing, but I can no longer scrapbook, write long handed or do anything that really requires hand co-ordination. I was trying to cook last night and was so frustrated that my hands just would not do what I needed them to do. They shake almost constantly now except of course, in the neuro's office this morning. It's scary and its frustrating and I'm just over all of it.
My other problem is that I am only going to have insurance until Aug. 31 and then I don't know what I'm going to do. I know we can't afford the medication I am on now once the insurance runs out, so I don't know how we are going to afford more doctor visits and more medication. At least I'm getting the MRI done before the insurance runs out.
I should just delete this as its just a long, whiney, pity party, feel sorry for me post and I don't intend it to be that way.
I'm home by myself, and have tried calling my husband and my best friend and neither are available. So I guess you guys get to hear my whiney, crying vent. I'm sorry. I know I should be happy, but I think that I've been pretty positive for so long and today just unleashed a torrent of pent up emotion that maybe I didn't even know I had.
And I know that I will be fine soon. It's just the initial stuff today and I think once I talk to my husband I'll be ok.
Thanks for letting me get my pity party over with here.
You call that a pity party?? Oh, please! You have alot to process right now and there really is no way to prepare for dealing with the reality of a serious disease. Hang in there, and let us know how the MRI and the waiting go!
I wouldnt call it a pity party, either. I think you are being brave, considering all you have been thru!
First of all, congrats on finding someone who will both listen to you and make you feel like this isnt in your head. Thats huge....now, Im going to suggest that you do this, since you only have a short time until your insurance runs out. Call the doctors office. Wait until the day of your MRI (afterwards). Tell them that you just had it and that they should be expecting results soon. MAKE SURE YOU HAVE THE FILMS. THEY WILL GIVE YOU COPIES IF YOU TELL THEM THAT YOU ARE TAKING THEM THE NEXT DAY TO ANOTHER DR. FOR A SECOND OPINION> GET THOSE FILMS AND MAKE SURE THEY ARE COPIES! Now, tell the receptionist the truth...that your insurance is going to expire. TELL Her that YOU REALLY CANT WAIT until Sept for answers because you are in so much pain...tell her YOU want to move your appt up, take a cancellation, whatever it takes...usually, when you tell the truth- they listen. They are used to hearing alot of BS from patients, but patients with MS, generally DO get some attention when they beg for it!
Now, about the Neurontin...there is a generic, its called Gabapentin. ITs very cheap...however, neurontin is the most widely prescribed pill for MS pain...it is an anti-seizure drug, which works on nerve pain..for some people, for me it did absoutely NOTHING...but for many, it works...
And, about the MS drugs...almost all of the companies do offer a free or sliding scale way of getting MS drugs (CRABS- Copaxone, Rebif, Avonex or Betaseron). When the time comes, if you are seriously wanting to start them (and I would) you can call all of them, telling them your situation, and asking for help. Any one of the drugs is better than not being on anything...I know people who get each of them for free....the only catch is that you have to prove your situation...either being in debt, out of work (due to MS), going thru a divorce, whatever it is...if you can back up why you are "needy" they do help..so, try not to stress over that right now...when the time comes, you will get help from one of the drug manufactures..
Until then, focus on getting a dx...and focus on trying really hard to get those films asap...and getting a sooner appt. Try talking to the doctors staff, either his receptionist, or nurse...bet they listen to you.
Good girl. Glad to hear you are on your way to getting that much needed DX.
Stay brave, ok? IT gets easier.....part of why you are crying is relief that someone took you seriously...thats more than half the battle....believe it or not, with a dx, and some direction, youll start to feel even better. This is normal, weve all been there, even me....you will get stronger. I promise.
You may want to consider a clinical trial. I happen to be in one now myself. This particular one tests Avonex and Copaxone in combination. It lasts 36 months, and costs you nothing. Last I heard there are still openings.Ask your Neuro.
As far as the crying, I had a bout of that driving to work this Monday...so I did the manly thing and pounded my fist on the center console...worked wonders as the pain in the fist made the anger/depression go away
Good luck to you. Mitch
Don't beat yourself up by calling your emotional state a pity party! Many of us have been in your shoes.
I also was diagnosed with Fibro at 42 by a Rheumatologist. All symptoms mysteriously disappered about 6 weeks later. At 56, I went to my first neuro, had four brain lesions at the time. Diagnosis: CIS--clinically isolated syndrome--"unlikely to reoccur." Three months later, it did, along with numbness, brain fog, balance issues, numbing fatigue, sensory issues and etc.
Second neuro said (without examining me) "I think your Fibro is back!!!!)
Third neuro said maybe lupus, some other connective tissue disease, maybe cerebral artery disease, maybe Lymes. All tested negative.
Fourth neuro was an MS Specialist PHD--his expertise is MS. Diagnosed in two days with MRI, MRS and all my old MRI's and test results I had brought along to the appts. This took four years and I was diagnosed in two days by someone who knows his stuff, finally!
I know you want answers and help now. I was there too. It took me a long time to get over all the dismissals of my symptoms by these other neuros. You almost begin to believe their press instead of what you are feeling and experiencing in YOUR body.
It sounds like this neuro is very thorough, and is not dismissing your symptoms as imagined or stress or all the other excuses they can tend to give when they don't know the answers or do not feel confident to diagnose.
I now have only 10 brain lesions, and am doing well on Rebif. I started out with four------perhaps a more prompt diagnosis and treatment would have prevented the additional lesions but who knows. I just remember the months of feeling totally dismissed by these Docs, and starting to question my own sanity.
I know the saying may sound trivial, but hang in there a bit longer. Don't give up finding answers, because they are there. It just takes a good neuro. who is willing and smart enough to look at everything.
Take care and let us know how everything goes.
BTW--venting here is good. Many who have not gone through this will never get it, but folks on this board do.
First of all I want to tell you that EVERYONE on this board has felt the way you were feeling or still are. Getting diagnosed is the hardest thing. Trust me I have been having the same symptoms for around 6 years and was also told it was fibromyalgia (SP?) because my doctor wanted to shut me up. They have always told me my pain had to do with that (which they never even accurately checked me for) or my thyroid, even when my bloodwork came back fine. They basically treated me like I was imagining things. I have never imagined any of the pain I feel! I went to my 1st MRI and cried while they did it because I knew something was not right. It was me who finally said I can't live with this pain anymore, send me to a neuro and guess what?? I have lesions on my brain. I have not been diagnosed with MS but am on a medication given to MS patients and also see MS specialists. I had my repeat MRI on Monday and am awaiting the results to see if my 2nd is different then my 1st. Try everything you can to keep your insurance! Each MRI costs around $2000 and my medication each month for only 1 pill a day is $100 a month if I had no isurance. I wish you the best of luck, and make sure you know that if you need anything you can come and talk to everyone here. We all know how you feel! Believe me, I NEVER thought anyone knew how I felt until I came here.
Last edited by hereinwi; 07-12-2007 at 10:22 AM.
Reason: Typo like usual :)
Thanks everyone. I've had a couple days to absorb everything and I truly think that I was so emotional out of relief, hope and just the fact that someone FINALLY was taking me seriously.
I appreciate everyone's responses. It's been such a long, hard journey that to finally see some light at the end of the tunnel is a relief.
I just hope we can afford the treatments, doctors, etc. We cannot keep the ins. It is from my husband's previous job and we had a certain amount of time on it before it runs out. I don't know if I'm even going to be able to get on his new insurance. He's checking, but it's so common now for them to exclude pre-existing conditions that I don't know. My medication that I take now and the dr. I see monthly run about $500 currently without insurance. So I don't know what we will do, but we will figure something out.
I'm so happy to finally have a good doctor that listens. I know that in itself is MAJOR. Believe me, I've had bad ones in the past.
So now, we go from here.
I am going to Florida for Labor Day weekend as a very good friend of mine is turning 40 and getting divorced (her husband was cheating), so several of us are getting together for a long girls weekend and I'm really excited. My only concern is the heat and humidity down there. I lived there for 44 years so I KNOW how bad it is and August and Sept can be the worst months.
One of the reasons we moved to SC was the summers here are not that bad or that long.
But I have something to look forward too and to keep me busy while I wait for that Sept. 12 appointment with the neuro.
Thanks again, everyone. You have been great. The support here is just awesome!