RPO34654
12-16-2005, 01:41 PM
Hi all! :wave:
I've been lurking for a few months but haven't posted due to the fact that I have still not beed dx'd yet. Thankfully, I am getting closer to finding the answers that have eluded me for the past year and a half.
My symptoms started suddenly in May of '04. I had just given birth to my 3rd child 2 months before. It started with a horrible pain in my left foot. Then, one night a few days later, I went to get out of bed to go the bathroom and fell into the wall. My left leg felt like it wasn't there and it wouldn't work. It wouldn't support me at all. The next morning it was okay again.
But, for a few weeks after that I experienced times when it would give out on me again as I tried to stand up after sitting.
During the next 2 months I started experiencing numbness and tingling in my legs and feet, in my back, my tongue went numb for 2 weeks. I've had electrical shocks in my left arm, memory loss, trouble finding words, severe pain in various joints, debilitating fatigue, muscle twitching, painful muscle cramps and periods of vertigo. (Researching these symptoms led me here.)
I was told by my previous GP that I was "depressed and it was all in my head" and my now former neuro said I was "crazy".
Obviously, they are no longer my doctors.
This week has been a very special one for me. On Wednesday I saw my new neuro who ordered lots of blood work and, finally, an MRI of my brain. He mentioned wanting to either rule out or verify Lupus or MS.
Yesterday I had a NCVS and EMG done. (The doctor did tell me that there was a delay in the response in my left arm.) This doctor is the partner of my pain management Dr. (I also have 3 herniated discs in my lumbar spine)
He was wonderful! He assured me that the doctors I have now are good and together they will find out what's going on with me.
Reading many of your stories here, I felt so much in common with a lot of you.
I am hoping to learn more, share my experiences and maybe make a few friends.
Blessings,
Robyn
I've been lurking for a few months but haven't posted due to the fact that I have still not beed dx'd yet. Thankfully, I am getting closer to finding the answers that have eluded me for the past year and a half.
My symptoms started suddenly in May of '04. I had just given birth to my 3rd child 2 months before. It started with a horrible pain in my left foot. Then, one night a few days later, I went to get out of bed to go the bathroom and fell into the wall. My left leg felt like it wasn't there and it wouldn't work. It wouldn't support me at all. The next morning it was okay again.
But, for a few weeks after that I experienced times when it would give out on me again as I tried to stand up after sitting.
During the next 2 months I started experiencing numbness and tingling in my legs and feet, in my back, my tongue went numb for 2 weeks. I've had electrical shocks in my left arm, memory loss, trouble finding words, severe pain in various joints, debilitating fatigue, muscle twitching, painful muscle cramps and periods of vertigo. (Researching these symptoms led me here.)
I was told by my previous GP that I was "depressed and it was all in my head" and my now former neuro said I was "crazy".
Obviously, they are no longer my doctors.
This week has been a very special one for me. On Wednesday I saw my new neuro who ordered lots of blood work and, finally, an MRI of my brain. He mentioned wanting to either rule out or verify Lupus or MS.
Yesterday I had a NCVS and EMG done. (The doctor did tell me that there was a delay in the response in my left arm.) This doctor is the partner of my pain management Dr. (I also have 3 herniated discs in my lumbar spine)
He was wonderful! He assured me that the doctors I have now are good and together they will find out what's going on with me.
Reading many of your stories here, I felt so much in common with a lot of you.
I am hoping to learn more, share my experiences and maybe make a few friends.
Blessings,
Robyn
Sponsor
lilc
12-16-2005, 04:51 PM
Robyn, I am sure you will find here what you are hoping to find, this board has helped me so much! Welcome.
I'm glad you got rid of the other docs, hope you get answers soon! And it certainly makes sense, based on your symptoms, that you ended up here.
I'm glad you got rid of the other docs, hope you get answers soon! And it certainly makes sense, based on your symptoms, that you ended up here.
curiousforever
12-16-2005, 08:27 PM
Hi!
My symptoms started with a vengence I think in august or september. except for foot drop and falling over-those started before then-but I had chalked it up to me being a klutz.
Glad you got rid of those docs - good ones can be hard to find!
My symptoms started with a vengence I think in august or september. except for foot drop and falling over-those started before then-but I had chalked it up to me being a klutz.
Glad you got rid of those docs - good ones can be hard to find!
Sharon Grace
12-18-2005, 02:34 AM
Hi Robyn! Welcome to the boards! Sorry you've been going through the long search for a diagnosis. Most of us with MS went through months (in my case years) before getting answers. I will say this - do not give up. You will get to the right doctors who will help you (sounds like you are on the right track now). I went to several who gave me lots of bad answers but I finally found a Neurologist who really listened to me. I can't tell you how many docs said all my problems were from stress or anxiety and just wanted to put me on Prozac. One got creative and said I had allergies but couldn't say allergies to what! One doc said I'd feel much better if I just lost weight. That extra twenty pounds was causing all my problems. When my neuro had me do a brain MRI - big surprise - MS lesions! I had heard so many bad diagnoses that when I found out it was indeed MS, I was actually relieved that my search was over and I was not crazy as some docs tried to tell me. So hang in there until you get answers you are satisfied with. Stay in touch. This MS board is a great place to get questions answered or just to vent if need be. Good luck to you. You will get the bottom of it! Happy Holidays to you! Sharon Grace :wave:
nitam
12-18-2005, 10:32 AM
Hi, I too for now 2 years have been having strange symptoms that the doctors have been stumped on what is going on. And after many, many tests am now getting a second opinion from a different neurologist. This Dr. says my symptoms are all simular to MS which I don't want to hear but am to the point I just want to find out something and get some help. My last test I have just had was the evoked potentials. My appointment to talk face to face with the Dr. isn't till January, but over the phone they said they were "mildly abnormal findings". Sadly enough I am actually relieved to have them find something since I began to think I was crazy that I don't feel good, but every test always came back normal!
RPO34654
12-18-2005, 02:01 PM
Hi, I too for now 2 years have been having strange symptoms that the doctors have been stumped on what is going on. And after many, many tests am now getting a second opinion from a different neurologist. This Dr. says my symptoms are all simular to MS which I don't want to hear but am to the point I just want to find out something and get some help. My last test I have just had was the evoked potentials. My appointment to talk face to face with the Dr. isn't till January, but over the phone they said they were "mildly abnormal findings". Sadly enough I am actually relieved to have them find something since I began to think I was crazy that I don't feel good, but every test always came back normal!
I know exactly what you mean! After all this time without any answers I am hoping the MRI and EMG will show something.
Sometimes I start to think maybe I really am crazy and it's all in my head. How sad is that? But you know when things aren't right and your body is telling you so. Trying to get someone else to listen is the hard part.
At least this time, my new neuro called me "an enigma". I'll take that comment any day over "crazy"! LOL!
I know exactly what you mean! After all this time without any answers I am hoping the MRI and EMG will show something.
Sometimes I start to think maybe I really am crazy and it's all in my head. How sad is that? But you know when things aren't right and your body is telling you so. Trying to get someone else to listen is the hard part.
At least this time, my new neuro called me "an enigma". I'll take that comment any day over "crazy"! LOL!
nitam
12-26-2005, 06:10 PM
Hi RPO34654, I was just wondering if you had gotten the results back from any of your tests yet? I suppose not, it hasn't been long enough (at least with mine it seemed was about 3 weeks!) I have to work on my patience:) I'm anxious to hear from you...Hope everyone's Christmas was good. nitam
Shadowrider
12-26-2005, 09:54 PM
These messages sure hit home with me! I've been going through much the same thing, now the neuro is not listening to me, but ordering another neuropsych test! He told me, "If I were you, I'd be happy to find out my problems are emotional! We can fix that! We can't fix brain damage or spinal cord injury!" He certainly has never been a patient before, has he! And he's also most likely on his way out soon if this keeps up. I simply hate the thought of going for another neuropsych test, it's so grueling and I'm worse off now than when I went a year and 3 months ago!
Years ago, I made the acquaintance of a wonderful doctor, his name was Matthew Budd and he developed this seminar to give to doctors teaching them how to LISTEN to their patients! (Dr. Budd was a professor at Harvard Med. School). Isn't it something that after all of these years, doctors still don't know how to listen to their patients and use that information to determine what the problem is? It's tragic, that's what it is!
Every time I go to my doc or neuro, I take a list of my sx, and I do this because I think someday, someone smart will read them and figure this all out! But I don't think they read them and the last visit to the neuro, I didn't even go over them, because he said my problems are emotional since it's been almost two years since my injury and I'm still having trouble. Gee, a broken neck and significant head injury just aren't enough reasons to have problems, I guess.
Sorry to get off on a tangent about ME, but as you can see, so many people go thru these same challenges with doctors and it's just not right!
thanks for letting ME vent!
hugs,
Shad
Years ago, I made the acquaintance of a wonderful doctor, his name was Matthew Budd and he developed this seminar to give to doctors teaching them how to LISTEN to their patients! (Dr. Budd was a professor at Harvard Med. School). Isn't it something that after all of these years, doctors still don't know how to listen to their patients and use that information to determine what the problem is? It's tragic, that's what it is!
Every time I go to my doc or neuro, I take a list of my sx, and I do this because I think someday, someone smart will read them and figure this all out! But I don't think they read them and the last visit to the neuro, I didn't even go over them, because he said my problems are emotional since it's been almost two years since my injury and I'm still having trouble. Gee, a broken neck and significant head injury just aren't enough reasons to have problems, I guess.
Sorry to get off on a tangent about ME, but as you can see, so many people go thru these same challenges with doctors and it's just not right!
thanks for letting ME vent!
hugs,
Shad
nitam
01-07-2006, 05:51 PM
Hi to all of you, I'm back and feeling a bit scared and overwhelmed. I was just at the neurologist office and my results on the evoked potentials she said were abnormel response in my left eye and left leg. Now I have to go for a spinal. The Dr.also gave me a sample of provigil to try for the fatigue. Do you think it takes a few days for it to work better? I took 1 yesterday and I didn't think I felt any different...When I asked the Dr. questions about" if I was diagnosed with Ms" would treatment start right away or wait? She explained the different treatment programs and gave me a whole bookbag full of info on the drug she would recomend for me(Copaxone) Maybe I'm reading into this, but do you think she has a gut feeling that I do have MS? My symtoms have been around for 2 1/2 years. I'm sorry I know I'm rambling on. And do you think that stress or being upset can bring on some of the symptoms? At my appt. with the Dr. I was feeling pretty good and now today the tingling/ache in my left side of body and face is worse and I am totally wiped out. I am so sick of this!!!!!!!!!!!!!:( Sorry, I don't know how you guys do it that have had it for years. I used to have so much energy and was so active before this all started. Thanks for listening.
Flustered
01-07-2006, 07:14 PM
Robyn,
I've been researching every site and every posting for someone to mention some of the things you did in yours!! I have not been diagnosed with anything yet - but I have symptoms that are unexplainable and down right irritating at this point. I have been diagnosed with Optic Neuritis and Pars Planitis - inflammation in my eyes. :eek: I also have parts that "fall asleep" and tingle, vertigo a lot, and some unexplanable (they call it palindromic rheumatism) - some fancy term for arthritis. And I get muscle aches all the time that I can't explain. Putting together my eyes, my muscles, my joints, and the bills - it's all got me pretty tired out. I've just about given up on trying to get a diagnosis. This time (after going through a bout of the pars and then getting it back again AFTER treatment - ONE DAY before I was to have my last appt.) they want me to check for Sarcoidosis. UGH!
Sorry to rain on the parade, but I guess I'm looking for answers like anyone else. Oh - and I feel like I'm getting "clumsy" lately too - and the way I think and speak is messed up a little (only obvious to me) and I bite my tongue a lot. Guess maybe it's all in my head like they say - or maybe I need new doc's too.
I've been researching every site and every posting for someone to mention some of the things you did in yours!! I have not been diagnosed with anything yet - but I have symptoms that are unexplainable and down right irritating at this point. I have been diagnosed with Optic Neuritis and Pars Planitis - inflammation in my eyes. :eek: I also have parts that "fall asleep" and tingle, vertigo a lot, and some unexplanable (they call it palindromic rheumatism) - some fancy term for arthritis. And I get muscle aches all the time that I can't explain. Putting together my eyes, my muscles, my joints, and the bills - it's all got me pretty tired out. I've just about given up on trying to get a diagnosis. This time (after going through a bout of the pars and then getting it back again AFTER treatment - ONE DAY before I was to have my last appt.) they want me to check for Sarcoidosis. UGH!
Sorry to rain on the parade, but I guess I'm looking for answers like anyone else. Oh - and I feel like I'm getting "clumsy" lately too - and the way I think and speak is messed up a little (only obvious to me) and I bite my tongue a lot. Guess maybe it's all in my head like they say - or maybe I need new doc's too.
RPO34654
01-08-2006, 08:38 AM
Hi RPO34654, I was just wondering if you had gotten the results back from any of your tests yet? I suppose not, it hasn't been long enough (at least with mine it seemed was about 3 weeks!) I have to work on my patience:) I'm anxious to hear from you...Hope everyone's Christmas was good. nitam
Hey Nitam, So sorry it's been awhile since I replied. I'll write a post about my visit to the neuro on Friday. :)
Hey Nitam, So sorry it's been awhile since I replied. I'll write a post about my visit to the neuro on Friday. :)