A diagnosis...finally!!

Finally, A diagnosis!!

August 30 2006...Well, now starts another phase of this. In the beginning of this month I had another "episode" but this time its totally different then the others. I'm partially paralyzed on the right side of my face, my speech has been affected and the dizziness has gotten ALOT worse!

This time when I went to the doctor he finally gave me a positive diagnosis...Multiple Sclerosis. I've had to stop working, due to the chronic dizziness, which I was hoping I wouldn't have to do.

August 1999... And the saga continues......That last episode ended, except the dizziness that is. That one was over only a few weeks when yet another episode hit. Only this time its the worse its ever been. I'm almost totally blind in my right eye, which my doctor told me is Optic Neuritis and my left leg has gone completely numb. I went back to see my neurologist and he's hopeful that this will pass or at least lighten up.

September 1999...Well I'm still having this episode and its been little over a month so far and if anything, its getting worse if thats possible!

My doctor started me on a treatment with Avonex, one of the only 3 medications approved by the FDA for MS which I've heard good things about so hopefully it helps *fingers crossed*.

So life isn't real good right now...have you ever felt like you were on a downhill sled ride with NO brakes?

December 1999... Well I've been on the Avonex for 3 months now and so far I haven't really seen any difference but my doctor told me that it could take awhile and that even though I don't "see" any difference he says that it IS helping, I guess more on the inside than the outside...I dunno I just don't see or feel it but I'm still trying to remain hopeful about it, I mean what do I have to lose??

To date I'm not any better. My left leg is still totally numb and I have to walk with a cane. My right eye is still messed up, thought they told me that that would get better????? and my speech is still "slow" but mainly only when I'm upset or nervous about something.

I'm just so tired of all this. I'm tired of being chronically dizzy 24 hours a day 7 days a week for the past 7 years!!!! Am I feeling sorry for myself? YEP I think I am a little but I have NO energy to pull myself out of this depression and attempt to get on with life.

February 2000... Now starts a more serious phase. I'm going through another episode. This time my right leg is totally numb which extends from my toes to my lower back on the right side. The dizziness is ALOT worse and I've lost almost all coordination with my left leg. Upon talking with my neurologist he says that I don't have "relapsing remitting", I have "secondary progressive" but he's still advising me to stay on the Avonex although he says there's no "proof" that it will help my form of MS he says I have nothing to lose by staying on it. Now when he told me that I paniced and automatically senticed myself to death basically. Then I snapped outta that and started doing some research when I went to the MS home page where I found the following...

"A relapsing-remitting course, is characterized by partial or total recovery after attacks (also called exacerbations, relapses, or flares). This is the most common form of MS. A relapsing-remitting course which later becomes steadily progressive. Attacks and partial recoveries may continue to occur. This is called secondary-progressive MS."

That helped a little bit, not much but a little *shrug*...I'm not walking that great and fall over alot. I have to use a walker most of the time and I'm afraid the next step will be a wheel chair which I'm REALLY not wanting to do but I'm afraid it looks like I'll have to *sigh*.

March 2000... Nothing has changed from the above. I'm having IV Steroid treatments and am seeing a new neurologist, one who specializes in MS who advised me to STOP taking the Meclizine/Antivert he says that could be making my dizziness worse NOT better due to the fact that I've been taking it for so long (since 1993). So he's given me a different medication that may help called Topamax. So far it seems to be doing good so we'll see.

April 2000... The IV steroids I was on last month did have a positive effect. The feeling has come back in my legs also that 1/2 and 1/2 numbness I had on the right side is totally back now. There's been no change with my left leg though, the coordination it still real off and I still have no control with it. The dizziness has gotten ALOT worse so I went to see my neurologist today (4-11-2000) who said I was having yet another episode. Hell, I haven't even gotten over the last ones I've been going through. It seems they just keep piling up on each other...pretty soon I'll be just one massive episode!! My speech has gotten alot more slurred I guess is the word he uses, I just say its messed up. Its like I'm drunk only problem is I don't drink *shrug*. He wants me to double up on my dosage of the Topamax, also he said since the Avonex doesn't seem to be helping me he's gonna change me over to Copaxone in June. A friend on mine also has MS and she was also on Avonex with no results when her doctor changed her to Copaxone and it made all the difference in the world to her, She was basically bedridden and in a wheelchair before but now after that change she's back up and walking around unassisted and is back to work. She still has MS of course but she's so much better she says its like night and day so I almost can't wait to try it although with Copaxone its an everyday injection whereas with the Avonex its only a once a week injection which I can handle...guess its something I'll have to get used to *shrug*

August 2000... Well due to some health complications which prevented me from getting in to see my neurologist I wasn't able to start the Copaxone in June but I'm about to get started on it within the next few days. I've heard GREAT things about it so I'm rather excited about starting it, I'll post the results if any :)

End of August 2000... Well so far so good, I started the Copaxone on the 24th of August and the daily injections isn't as bad as I thought it would be. Its a TINY needle and I don't even feel it when it goes in which is a good thing :) and it only takes about 5 minutes from start to finish to give the injection. There's been NO side effects at all other than a little itching at the injection site but that goes away after about 15 mins or so.

October 2000... I've been on the Copaxone for about 2 months so far but I haven't really noticed any changes yet but I guess its gonna take some time so I'm still hopeful. I have noticed one side effect if thats what ya want to call it, I get red welts at the injection site. They don't hurt but they itch like crazy and they don't show up until the day after I do the injection, it looks like there's a golf ball under the skin and it gets real hot around that area but so far thats only about a week or so then its gone. I was told by a friend that her friend also had that happen to him but after his body adjusted to the medication that never happened again...so thats encouraging *scratches* haha

February 2001... I've been on the Copaxone for 6 months now and I can honestly say that I'm NOT feeling ANY better which is soooo depressing as I had such high hopes with this drug and I've heard so many good things about it but I only keep getting worse and worse...I'm really starting to lose hope.

March 2001... Nothing new really, I'm still having NO results from the Copaxone or at least results that I can see and I'm really getting frustrated and I'm at a real low point right now and wondering why in hell I keep trying because it seems that everytime I get my hopes up that something will help, it doesn't....

End of September 2001...Well my doctor took me off the Copaxone since it didn't do any good and put me on Betaseron so we'll see how that one works. That sort of completes the A B C's for drug therapy for MS...Meaning A for avonex, B for betaseron and C for copaxone.

Middle of November 2001...Well to me the unthinkable happened! On my last visit to my neurologist he prescribed a motorized wheelchair and TOLD me I NEEDED to use it but not so much for here around the house, more for when I venture outside. I just really didn't want to get to this step *major sigh and tears*

End of November 2001...Alright now I'm really starting to get scared. I had another STRONG episode which this time attacked the right side of my body and has left me almost 85%numb and on my way to see the neurologist my left eye went totally dark WHILE I WAS DRIVING!! It didn't last very long but my doctor said that I no longer have the "secondary progressive" MS, that with all the episodes I've been having he says that I'm in the very beginning stages of "Primary Progressive MS" which he said could go either way, by getting worse in which I more than likely would end up confined to a wheel chair OR he says that I could end up recovering from this. The thing that really gets me is THEY DON'T KNOW WHICH COURSE MS TAKES SO IT'S ALL GUESS WORK!

February 2002...Well I had to do something that I thought or was hoping that I wouldn't have to do but I ended up having to get a motorized wheelchair. My family told me that IF I was to get one of those that would mean that I'm giving up or in to the MS but I look at it in a totally different way! By me getting one I look at it as a way or means for me to get the heck out of the house and interact more with people instead of becoming or remaining a hermit. But it's still a step that I was really hoping that I wouldn't have to do ya know? But the MS is progressing so fast unfortunately that it's hard for me to get around :(

July 2002...Geez this is all progressing so fast. I can barely move my arms and I'm having a lot of problems in just walking.

August 2002...I've had enough of this! Whenever I go to the doctor for ANYTHING they always tell me "oh it's the MS" well BULL! I mean I could have a hang nail for gosh sake and they'd say the same thing "it's just the MS"! I am fighting so hard not to give up or in to all this but I seriously don't think I can anymore. I'm being forced to find a different place to live, so not only is that stressful I'll have to pack up my entire household and move! And the doctors tell me I have to cut down on the stress in my life because it'll only make the MS act up even worse. Well guess what..for once the doctor was right :(

December 2002...And the Drugs change AGAIN. This time my neurologist switched me from all the ABC drugs to a new one called Rebif and yet again it's a 3 times a week self injection but this drug comes in a box of pre-filled Syringes, so no more having to mix different vials and hope you got the dose right so that's one big plus for it anyway. The company that handles that sent me my first month's worth of the drug, I'm just waiting now for the nurse to come over and go over it with me how this drug is suppose to get injected and such like that, she's due over to my house on the 11th so we'll see how THIS drug will work (better then the other one's I hope!)

April 2003... Geez I hadn't realized it's been since a long time since I've updated this page. Since my last entry I've stopped taking ANY MS drugs as my health has been Deteriorating and I'm not sure if it's getting worse because of all the side effects of all the MS drugs my doctor had me on or if it's the MS itself. So I've decided to stop taking ANY of those MS drugs, I mean I guess I'm in that mode that "there's no cure for MS, no one knows how anyone gets it nor does anyone know how to cure it"

^Just a footnote....When this all started back in '93 my main complaint other than the dizziness was the feeling that my neck muscles wouldn't hold up my head. My doctor bascially laughed it off. When I told that to my neurologist I have now he shook his head and said "good God Linda, if someone came to me with symptoms like you had back then, the warning flags would have gone up and I would have immediately got you in to have an MRI done because one of the first things I would have thought of would have been MS, yes there's no one test to determine whether someone has MS or not but there are signs if a doctor knows what to look for".

So what I'm trying to say to anyone who is reading this is please get more than just one opinion, get a second and a third and a forth if necessary but MAKE them listen!! Don't let the doctors make you feel like you don't know your own body and that you don't know whats normal for YOU. Afterall they work for YOU not the other way around ya know? Having a good doctor that you can trust and that you feel comfortable with is half the battle!! Sometimes it doesn't feel like such doctors exist but let me tell you, after 7 years of dealing with this crap and bouncing from doctor to doctor and FINALLY finding a good one I can tell you they DO exsist....just keep looking, the good ones ARE out there!!!Well think I did finally find a good one...in Sept 2005 I FINALLY found a good neuro

I have tried getting ahold of all the agentcies..."State for medicaid, And the federal government for medicare perscription drug help" but did any of them listen NOOOOO so they too all turned their backs on me.....I mean I wasn't asking for help I was BEGGING FOR HELP.

Sites for answers:

: Vertigo Explained, inner ear disorders ... Dizziness/Vertigo; Vestibular Rehabilitation Programs from the Mayo Clinic ... Rehab program; Symptoms, Treatments, General Info ... Multiple Sclerosis
: Chat with others who have MS. There is comfort in groups! ... MS Chat Room
: An excellent source of information ...Frequently Asked Questions (FAQ) Concerning Multiple Sclerosis
: The first place to start ...The National Multiple Sclerosis Society
: Get Educated as soon as possible ...MS Educational Programs
: A GREAT source of information ...SpotLight Health; Search for the MS Chapter nearest to you ...Multiple Sclerosis Society Chapters
: A thesis on what MS is Enviromental Multiple Sclerosis
: A GREAT source of information! MS Watch