Deedle77
08-25-2007, 10:15 PM
I have been away for awhile - hospitalized for 5 days for the Solu-Medrol IV drip, but prior to that was new to this board (I had posted "Unusual Episodes" as a newby, which turned out to be partial seizures).
Along with the 2 seizures (which my neuro says only happens to about 5% of MS patients), I had gotten to the point where it was difficult to walk, I could not use my right hand or arm because it was so weak and I felt like I hurt everywhere. I've had cognitive issues for years, pain in my feet on and off, an MRI in 2005 that showed lesions, a new MRI last month that showed new lesions (yet they didn't seem to be active) and still no diagnosis until last week.
Finally my Neuro, who is an MS Specialist, sent me to Pasadena for an MRS (Magnetic Resonance Spectroscopy) after ruling everything else out, including Lupus, Lyme, RA and APS among other things. He concluded that I do indeed have MS, hospitalized me for 5 days with the Solu-Medrol IV therapy, ordered a lumbar puncture (for additional information) and had a physical therapist come in to help me to get my legs moving again. Boy, that steroid treatment worked wonders, but coming off of it was much more difficult than I ever expected!
I'm sharing my story because I know how frustrating it can be to feel so poorly for so long and not know what is going on. My neuro now says I have had this for years, but I guess it is just so difficult to diagnose without all the pieces of the puzzle fitting together. I have never felt so frustrated and discouraged, feeling like I am living half of a life with no answers as to why. I even had friends giving up on me because I got to the point where it was difficult to commit to anything socially when I wasn't sure how I was going to feel or if I was even going to be able to get out of bed.
Anyway, my advice is DON'T STOP PUSHING FOR ANSWERS. We know our bodies and we know when something is wrong! Find a doctor that will work aggressively with you for answers and if you don't have one that will, find one and get on the right track. I would have been in much better shape had I known what I was fighting years ago, though I am just grateful to finally know now so I can move forward.
Annie
Along with the 2 seizures (which my neuro says only happens to about 5% of MS patients), I had gotten to the point where it was difficult to walk, I could not use my right hand or arm because it was so weak and I felt like I hurt everywhere. I've had cognitive issues for years, pain in my feet on and off, an MRI in 2005 that showed lesions, a new MRI last month that showed new lesions (yet they didn't seem to be active) and still no diagnosis until last week.
Finally my Neuro, who is an MS Specialist, sent me to Pasadena for an MRS (Magnetic Resonance Spectroscopy) after ruling everything else out, including Lupus, Lyme, RA and APS among other things. He concluded that I do indeed have MS, hospitalized me for 5 days with the Solu-Medrol IV therapy, ordered a lumbar puncture (for additional information) and had a physical therapist come in to help me to get my legs moving again. Boy, that steroid treatment worked wonders, but coming off of it was much more difficult than I ever expected!
I'm sharing my story because I know how frustrating it can be to feel so poorly for so long and not know what is going on. My neuro now says I have had this for years, but I guess it is just so difficult to diagnose without all the pieces of the puzzle fitting together. I have never felt so frustrated and discouraged, feeling like I am living half of a life with no answers as to why. I even had friends giving up on me because I got to the point where it was difficult to commit to anything socially when I wasn't sure how I was going to feel or if I was even going to be able to get out of bed.
Anyway, my advice is DON'T STOP PUSHING FOR ANSWERS. We know our bodies and we know when something is wrong! Find a doctor that will work aggressively with you for answers and if you don't have one that will, find one and get on the right track. I would have been in much better shape had I known what I was fighting years ago, though I am just grateful to finally know now so I can move forward.
Annie
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MSNik
08-25-2007, 10:53 PM
HI Annie. Just wanted to say thanks for giving out the good advice that you did. As someone who had NO PROBLEM getting a dx (mine came within a month of my first symptoms) I can only read about people who have gone thru Heck and high water trying to get a dx...and feel awful for their battle. Your story is one of hope, and I think we all need to read about that!
Sorry you went thru so much to get where you did. And, yes, steroids, IV can wreck havoc on you when you come off them. Next time, ask them about doing them at home. They have a home infusion nurse come to your house and administer it, alot more comfortable then being hosptialized for a 2 hour a day infusion! However, its important the first time to make sure you dont have any reactions to the steroids. Sounds like you didnt, thats great!
Continue to feel better, and share with us your progress now that you have a dx. Are you thinking meds? Thinking of starting any of the injectables? My drug is Rebif, which I think is really helping to stabilize me,but Ill get back to you on that in September. Ill have my yearly MRI this upcoming week, and a doctors appt to find out if Im doing as well as I think I am shortly afterwards..
I wish you well.
Nikki
Sorry you went thru so much to get where you did. And, yes, steroids, IV can wreck havoc on you when you come off them. Next time, ask them about doing them at home. They have a home infusion nurse come to your house and administer it, alot more comfortable then being hosptialized for a 2 hour a day infusion! However, its important the first time to make sure you dont have any reactions to the steroids. Sounds like you didnt, thats great!
Continue to feel better, and share with us your progress now that you have a dx. Are you thinking meds? Thinking of starting any of the injectables? My drug is Rebif, which I think is really helping to stabilize me,but Ill get back to you on that in September. Ill have my yearly MRI this upcoming week, and a doctors appt to find out if Im doing as well as I think I am shortly afterwards..
I wish you well.
Nikki
Deedle77
08-25-2007, 11:58 PM
Hi Nikki,
After a lot of research and a long consultation with my neuro, I've pretty much decided to go with the daily Copaxone injections. I'm very sensitive to meds, so I'm hoping to tolerate it okay and get good results without many side effects. At this point, I am waiting to hear what my insurance will cover and get all this red tape ironed out so I can get started. After that, I understand a nurse will come out and assist me in getting up and running with the injections.
Please keep me posted on how you are doing with the Rebif.
All the best to you in the meantime!
Annie
After a lot of research and a long consultation with my neuro, I've pretty much decided to go with the daily Copaxone injections. I'm very sensitive to meds, so I'm hoping to tolerate it okay and get good results without many side effects. At this point, I am waiting to hear what my insurance will cover and get all this red tape ironed out so I can get started. After that, I understand a nurse will come out and assist me in getting up and running with the injections.
Please keep me posted on how you are doing with the Rebif.
All the best to you in the meantime!
Annie
KTMorra
08-26-2007, 01:04 AM
Hi Annie
I remember when you first posted about your "unusual episodes" and I think I mentioned a similar thing that had been happening with the lower part of my body vs your upper part. I mentioned this to my Neuro at our last visit and he said that it was absolutely a possible seizure like activity and it is very rare to find it as a symptom in MS patients. Nothing about my Neuro history has been "text book" so he wasn't surprised when I mentioned it to him. He said that I have been keeping him on his toes for a long long time now LOL.
You are absolutely right about coming off steroids. It can be very difficult and I know I felt like something the cat drug in for about a week afterward. This was even with a tapered down dosage.
Only someone who has been going through what we have been could understand this next statement. "Congratulations on your finally getting a diagnosis" I know that I thought I was loosing my mind after so many tests and conflicting results. The day I got my diagnosis I remember crying my eyes out, not so much about being upset that I had MS but in relief that I finally had an answer and I wasn't going crazy. It's hard to fight an unknown opponent. At least now we know what we are up against and can move forward with treatment.
I started on Rebif but had to switch due to an allergic reaction. I switched to Copaxone 2 months ago and aside from a bee sting like sensation for about 5 minutes after the injection (I put a small ice pack over the site right after the injection) and an occasional swollen injection site I haven't had any side effects at all. The company that markets Copaxone has a wonderful help line and website. Everyone that I have spoken with has been very kind, patient and understanding.
Wishing you the best, please keep us posted as to how you are doing
Take Care
KT:wave:
I remember when you first posted about your "unusual episodes" and I think I mentioned a similar thing that had been happening with the lower part of my body vs your upper part. I mentioned this to my Neuro at our last visit and he said that it was absolutely a possible seizure like activity and it is very rare to find it as a symptom in MS patients. Nothing about my Neuro history has been "text book" so he wasn't surprised when I mentioned it to him. He said that I have been keeping him on his toes for a long long time now LOL.
You are absolutely right about coming off steroids. It can be very difficult and I know I felt like something the cat drug in for about a week afterward. This was even with a tapered down dosage.
Only someone who has been going through what we have been could understand this next statement. "Congratulations on your finally getting a diagnosis" I know that I thought I was loosing my mind after so many tests and conflicting results. The day I got my diagnosis I remember crying my eyes out, not so much about being upset that I had MS but in relief that I finally had an answer and I wasn't going crazy. It's hard to fight an unknown opponent. At least now we know what we are up against and can move forward with treatment.
I started on Rebif but had to switch due to an allergic reaction. I switched to Copaxone 2 months ago and aside from a bee sting like sensation for about 5 minutes after the injection (I put a small ice pack over the site right after the injection) and an occasional swollen injection site I haven't had any side effects at all. The company that markets Copaxone has a wonderful help line and website. Everyone that I have spoken with has been very kind, patient and understanding.
Wishing you the best, please keep us posted as to how you are doing
Take Care
KT:wave:
Deedle77
08-26-2007, 02:08 PM
Thank you for sharing your experience, KT. I also feel like one of those in the small percentage that is going to have the uncommon symptom or reaction. It is comforting to hear that you haven't had any bad reactions with Copaxone!
Please keep me posted, okay?
Annie
Please keep me posted, okay?
Annie
ezee
08-27-2007, 04:46 AM
Deedle, I have had both arms go completely numb on numerous occasions, while sleeping completely off of my arms, in my easy chair. With my arms laying on very cushy arms of the chair, I wake up and have to shake my arms for minutes to get sensation back into them. This had occured before when I slept on the couch, and I passed it off as leaning against the back of the couch, but after the easy-chair experiences (3 times), I was truly worried. I have problems holding things like a cup or glass, and often drop things. My wife now cuts the meat at the dinner table, because my hands have become so weak, and I can't keep from dropping the knife.
I have constant Edema (swelling) in my left leg, ankle, foot (as well as purple-ish coloration, and a predominance of left side pains, and I too have problems walking as I feel like my knees won't lock into place, especially on a downward incline. My legs seem to report pressure against me legs as pain, because when I am laying down, the pressure against my legs registers as pain.
Cognitive issues, my IQ has been reduced significantly to 108. I forget where I am going so often, I stopped driving. I forget the names of family close members, and my kids' friends who come by frequently. My dexterity has worsened such that they said my right is worse than left, and I am right handed, and my left was reported to be "Terrible".
I am glad that you have finally gotten your dx, and are beginning the process of working on stopping the progression. I wish I could say the same.
I feel sure that MS is what I have, from what I have read from others, and the major medical Insitutions, from Mayo, UC, and many others. Like you, I am very hesitant to accept invitations to anything. If I am to be Godfather, or honored as a primary sponsor in a niece's wedding, I am afraid that I will bring embarassment on them as I have had "Drop-Attacks" in public situations, or end up with my wife literally holding me up when receiving communion during a family member's wedding. It's all too embarassing yet the entire family feels like all they have to do is get me out of the house into the fresh air, and all will be better for me. So they continue to try and involve me, because, "You looks fine". The amount of energy I have is like a 90 year old. I certainly know of what you speak, and while I don't envy you having MS, I do wish that there was a definitive way to know that mine is, or isn't.
The things you have mentioned, sound much like mine. Does this sound like your symptoms? If so, is the numbness the seizures your Dr. was mentioning?
Thanks, Ezee.
I have constant Edema (swelling) in my left leg, ankle, foot (as well as purple-ish coloration, and a predominance of left side pains, and I too have problems walking as I feel like my knees won't lock into place, especially on a downward incline. My legs seem to report pressure against me legs as pain, because when I am laying down, the pressure against my legs registers as pain.
Cognitive issues, my IQ has been reduced significantly to 108. I forget where I am going so often, I stopped driving. I forget the names of family close members, and my kids' friends who come by frequently. My dexterity has worsened such that they said my right is worse than left, and I am right handed, and my left was reported to be "Terrible".
I am glad that you have finally gotten your dx, and are beginning the process of working on stopping the progression. I wish I could say the same.
I feel sure that MS is what I have, from what I have read from others, and the major medical Insitutions, from Mayo, UC, and many others. Like you, I am very hesitant to accept invitations to anything. If I am to be Godfather, or honored as a primary sponsor in a niece's wedding, I am afraid that I will bring embarassment on them as I have had "Drop-Attacks" in public situations, or end up with my wife literally holding me up when receiving communion during a family member's wedding. It's all too embarassing yet the entire family feels like all they have to do is get me out of the house into the fresh air, and all will be better for me. So they continue to try and involve me, because, "You looks fine". The amount of energy I have is like a 90 year old. I certainly know of what you speak, and while I don't envy you having MS, I do wish that there was a definitive way to know that mine is, or isn't.
The things you have mentioned, sound much like mine. Does this sound like your symptoms? If so, is the numbness the seizures your Dr. was mentioning?
Thanks, Ezee.
MSNik
08-27-2007, 10:38 AM
Ezee wrote a post to you specifically. Please see it in new threads.
Deedle77
08-27-2007, 02:52 PM
Hi Ezee,
I am so sorry to hear about all of your difficulties, not to mention the frustration from not getting any answers or even a diagnosis. It seems unbelievable!
Is there any possible way you can get into see an MS Specialist? How did your MRIs come out? Mine both showed lesions and yet it was the MRS (Magnetic Resonance Spectroscopy) that clinched it and gave the final diagnosis. Is there any way that you can have an MRS done there in the SF area? Even if you have to fly down here to the LA area, it would be worth it!
Getting a diagnosis first, so you can get on the right meds is so important. I know how you must feel about taking on anything or going places when you feel like your legs might buckle from under you. I had the same thing and fortunately for me, the 5 day hospitalization with the Solu-Medrol treatment worked wonders. I actually walked down a flight of steps yesterday with just a handrail to hang on to! I never would have guessed that I would be able to do that 2 weeks ago when I was walking like a cripple and had no use of my right hand and arm.
If you need to, don't be afraid to take someone with you to speak and be aggressive for you. I had become so weak, it got to the point where it became hard for me to push and be aggressive with the doctor. When he told me to come back in 2 weeks (again???), I broke down and started crying right in front of him. When he saw me fall apart, he knew he had a serious case of his hands. I'm not suggesting you do that, but you have to get someone's attention somehow so your doctor will get aggressive!
Feel free to PM me and I will give you the info on the MRS, MS Specialists or whatever you need. It's time you got answers!
Annie
I am so sorry to hear about all of your difficulties, not to mention the frustration from not getting any answers or even a diagnosis. It seems unbelievable!
Is there any possible way you can get into see an MS Specialist? How did your MRIs come out? Mine both showed lesions and yet it was the MRS (Magnetic Resonance Spectroscopy) that clinched it and gave the final diagnosis. Is there any way that you can have an MRS done there in the SF area? Even if you have to fly down here to the LA area, it would be worth it!
Getting a diagnosis first, so you can get on the right meds is so important. I know how you must feel about taking on anything or going places when you feel like your legs might buckle from under you. I had the same thing and fortunately for me, the 5 day hospitalization with the Solu-Medrol treatment worked wonders. I actually walked down a flight of steps yesterday with just a handrail to hang on to! I never would have guessed that I would be able to do that 2 weeks ago when I was walking like a cripple and had no use of my right hand and arm.
If you need to, don't be afraid to take someone with you to speak and be aggressive for you. I had become so weak, it got to the point where it became hard for me to push and be aggressive with the doctor. When he told me to come back in 2 weeks (again???), I broke down and started crying right in front of him. When he saw me fall apart, he knew he had a serious case of his hands. I'm not suggesting you do that, but you have to get someone's attention somehow so your doctor will get aggressive!
Feel free to PM me and I will give you the info on the MRS, MS Specialists or whatever you need. It's time you got answers!
Annie
Deedle77
08-27-2007, 02:54 PM
Hi Ezee,
I am so sorry to hear about all of your difficulties, not to mention the frustration from not getting any answers or even a diagnosis. It seems unbelievable!
Is there any possible way you can get into see an MS Specialist? How did your MRIs come out? Mine both showed lesions and yet it was the MRS (Magnetic Resonance Spectroscopy) that clinched it and gave the final diagnosis. Is there any way that you can have an MRS done there in the SF area? Even if you have to fly down here to the LA area, it would be worth it!
Getting a diagnosis first, so you can get on the right meds is so important. I know how you must feel about taking on anything or going places when you feel like your legs might buckle from under you. I had the same thing and fortunately for me, the 5 day hospitalization with the Solu-Medrol treatment worked wonders. I actually walked down a flight of steps yesterday with just a handrail to hang on to! I never would have guessed that I would be able to do that 2 weeks ago when I was walking like a cripple and had no use of my right hand and arm.
If you need to, don't be afraid to take someone with you to speak and be aggressive for you. I had become so weak, it got to the point where it became hard for me to push and be aggressive with the doctor. When he told me to come back in 2 weeks (again???), I broke down and started crying right in front of him. When he saw me fall apart, he knew he had a serious case of his hands. I'm not suggesting you do that, but you have to get someone's attention somehow so your doctor will get aggressive!
Feel free to PM me and I will give you the info on the MRS, MS Specialists or whatever you need. It's time you got answers!
Annie
I am so sorry to hear about all of your difficulties, not to mention the frustration from not getting any answers or even a diagnosis. It seems unbelievable!
Is there any possible way you can get into see an MS Specialist? How did your MRIs come out? Mine both showed lesions and yet it was the MRS (Magnetic Resonance Spectroscopy) that clinched it and gave the final diagnosis. Is there any way that you can have an MRS done there in the SF area? Even if you have to fly down here to the LA area, it would be worth it!
Getting a diagnosis first, so you can get on the right meds is so important. I know how you must feel about taking on anything or going places when you feel like your legs might buckle from under you. I had the same thing and fortunately for me, the 5 day hospitalization with the Solu-Medrol treatment worked wonders. I actually walked down a flight of steps yesterday with just a handrail to hang on to! I never would have guessed that I would be able to do that 2 weeks ago when I was walking like a cripple and had no use of my right hand and arm.
If you need to, don't be afraid to take someone with you to speak and be aggressive for you. I had become so weak, it got to the point where it became hard for me to push and be aggressive with the doctor. When he told me to come back in 2 weeks (again???), I broke down and started crying right in front of him. When he saw me fall apart, he knew he had a serious case of his hands. I'm not suggesting you do that, but you have to get someone's attention somehow so your doctor will get aggressive!
Feel free to PM me and I will give you the info on the MRS, MS Specialists or whatever you need. It's time you got answers!
Annie
Deedle77
08-27-2007, 02:56 PM
Hi Ezee,
I am so sorry to hear about all of your difficulties, not to mention the frustration from not getting any answers or even a diagnosis. It seems unbelievable!
Is there any possible way you can get into see an MS Specialist? How did your MRIs come out? Mine both showed lesions and yet it was the MRS (Magnetic Resonance Spectroscopy) that clinched it and gave the final diagnosis. Is there any way that you can have an MRS done there in the SF area? Even if you have to fly down here to the LA area, it would be worth it!
Getting a diagnosis first, so you can get on the right meds is so important. I know how you must feel about taking on anything or going places when you feel like your legs might buckle from under you. I had the same thing and fortunately for me, the 5 day hospitalization with the Solu-Medrol treatment worked wonders. I actually walked down a flight of steps yesterday with just a handrail to hang on to! I never would have guessed that I would be able to do that 2 weeks ago when I was walking like a cripple and had no use of my right hand and arm.
If you need to, don't be afraid to take someone with you to speak and be aggressive for you. I had become so weak, it got to the point where it became hard for me to push and be aggressive with the doctor. When he told me to come back in 2 weeks (again???), I broke down and started crying right in front of him. When he saw me fall apart, he knew he had a serious case of his hands. I'm not suggesting you do that, but you have to get someone's attention somehow so your doctor will get aggressive!
Feel free to PM me and I will give you the info on the MRS, MS Specialists or whatever you need. It's time you got answers!
Annie
I am so sorry to hear about all of your difficulties, not to mention the frustration from not getting any answers or even a diagnosis. It seems unbelievable!
Is there any possible way you can get into see an MS Specialist? How did your MRIs come out? Mine both showed lesions and yet it was the MRS (Magnetic Resonance Spectroscopy) that clinched it and gave the final diagnosis. Is there any way that you can have an MRS done there in the SF area? Even if you have to fly down here to the LA area, it would be worth it!
Getting a diagnosis first, so you can get on the right meds is so important. I know how you must feel about taking on anything or going places when you feel like your legs might buckle from under you. I had the same thing and fortunately for me, the 5 day hospitalization with the Solu-Medrol treatment worked wonders. I actually walked down a flight of steps yesterday with just a handrail to hang on to! I never would have guessed that I would be able to do that 2 weeks ago when I was walking like a cripple and had no use of my right hand and arm.
If you need to, don't be afraid to take someone with you to speak and be aggressive for you. I had become so weak, it got to the point where it became hard for me to push and be aggressive with the doctor. When he told me to come back in 2 weeks (again???), I broke down and started crying right in front of him. When he saw me fall apart, he knew he had a serious case of his hands. I'm not suggesting you do that, but you have to get someone's attention somehow so your doctor will get aggressive!
Feel free to PM me and I will give you the info on the MRS, MS Specialists or whatever you need. It's time you got answers!
Annie