Aa
In the process of a MS work-up- tired & confused
My name is Amanda, I am a 30 year old wife and mother of 3. I work as a CMA in an Internal Med/Ped office which I've been at for 9 1/2 years. This is going to be long and may seem jumbled but my cognitive functions aren't what they used to be. Here's my story:
My symptoms started in July. I felt as if I was coming down with a virus of some sort, I had extreme fatigue, joint pain, and brain fog (these symptoms lasted for 2-3 weeks). I had a recurrence of these same symptoms in July and they lasted about the same length of time. During this time my NP (who works at the same office that I do) did very through blood work that included Lyme, EB, CMV, Parvo Virus, vitamin levels, hormone levels, and many other tests. The only tests that were abnormal were my EB, CMV, & Parvo IgG titers and my Vitamin D level. Everything eventually went back to normal except for a a little fatigue, which I thought was from the fact that I had gallbladder surgery & started back to school part time in August. Fast forward to September 23rd. I was bathing my boys and getting thing ready for the upcoming week when I got what was one of the worst headaches that I had ever experienced in my life. It hurt only on the right side and behind my right eye, this headache lasted for at least 2 weeks and there was nothing that would take the pain away. I saw my NP which saw some upper horizontal nystagmus in my right eye and she ordered a CT Scan of my head which was normal. She mentioned that if I didn't feel better that I may need to see Neuro to rule out MS. During this time I experienced the same fatigue and joint pain as before but I started having a whole list of other symptoms. My vision was 'off' in my right eye, I never lost my sight, my eye felt swollen, there was pressure behind my eye, light sensitivity, the brain fog was back, I had trouble with slurring my words, finding words, losing my train of thought, trouble spelling, horrible short term memory, brain 'surges' that felt like shocks that started in my head and went through my entire body, dizziness, vertigo, tingling in my hands & feet, horrible anxiety, & ringing in my ears (which has been a chronic problem for years but it has gotten worse). On October 14th I had to go to the ER due to shortness of breath and chest pain that started in my sternum & radiated through the front part of my rib cage. At the hospital the did cardiac blood work, an EKG, & CT of my chest, all results were normal. I continued to have pain off and on behind my right eye so I went to the ophthalmologist, he didn't see anything that would be causing the pain and he didn't think any of this was related to MS because I didn't lose my vision. My list of symptoms above happened off & on, but almost daily. I started to have chest tightness that feels similar to what people say a MS 'hug' feels like, restless legs, cramps in my arms and my anxiety was through the roof, and mood swings. I saw the Neuro on 11/14 and he started the MS work up. He did blood work which included tests to rule out Sarcoidosis, & Syphilis and a Protein Electrophoresis, all were normal. He also ordered a NCV on the right side which showed carpal tunnel, this is nothing new I've suffered with it since the 10th grade. As usual all my symptoms continued and the week of Thanksgiving I started having numbness & tingling in both my legs that started at my calves and by the end of the week moved up to right above my knees. I feel this all the time and I have had a change in the feeling of my legs. For example, when I wouldn't shave my legs for a few days my legs would hurt because of the hair on them, now I can't feel that & have to touch my legs to see if I need to shave or not. Once my insurance FINALLY decided to pay for the MRI of my brain I had it done & it was normal except for 'Borderline low lying cerebellar tonsils'. At my follow up appointment he said that there is no compression due to this, this is an incidental finding (I saw the images myself and there is no brain stem or spinal cord compression that would cause problems), and it has nothing to do with my symptoms and that we are going to press on with the work up. He ordered VEP's (which I had on Monday) and a MRI of my C & T Spine (which we are fighting my insurance company for yet AGAIN) to look for lesions there, and I follow up with him in February. Oh another problem I'm having is that my big toe and sometimes the next 2 toes on both feet (the left worse than the right) go numb, to the point that they hurt. It isn't constant but at least once a day.
Any time I get too hot, mad, overwhelmed, stressed out, or worried I start to feel bad, the tingling in my legs gets worse, and I feel worn out.
During all this my home life has suffered terribly. My house is a wreck, I don't have any energy to do anything, I feel so detached from everyone, and there are times my relationship with my husband is strained and my lack of sex drive has not helped at all. He knows I don't feel well but I don't think he fully understands the fatigue/lack of give a damn(excuse my language) that I feel. I have had to hide all this from my parents because they are worriers and I don't want to tell them anything until I have all the answers possible. I have to write everything down the moment I think about it or it's gone. I have to make lists of things I have to do and places I need to go or I won't remember any of it. I have post its all over my desk at work to remind me to do stuff that is usually normal routine for me. I am on Buspar for my anxiety and it works wonders and I also take daily multivitamins.
Like I said this post is probably all over the place, I'm just tired of being in limbo and ready to have an answer. I know no one around me knows how I feel and I guess I'm just looking for reassurance that I'm not losing my mind. I don't want to be that person that everyone feels sorry for because of my condition.
Here are a few of my questions (the only ones I can remember right now)
If this is MS what are my chances of these symptoms going away completely?
If I have MS will I ever go back to my normal or should I just get ready to adjust to a new 'normal'?
If this isn't MS then what could it possibly be?
Does anyone have a diagnosis of MS with just spinal lesions?
Are the side effects of the drugs used to treat MS as bad as what I've read?
How can I put on the 'nothings wrong' face for my kids?
Any feedback is appreciated. Thank you all for your time.
My symptoms started in July. I felt as if I was coming down with a virus of some sort, I had extreme fatigue, joint pain, and brain fog (these symptoms lasted for 2-3 weeks). I had a recurrence of these same symptoms in July and they lasted about the same length of time. During this time my NP (who works at the same office that I do) did very through blood work that included Lyme, EB, CMV, Parvo Virus, vitamin levels, hormone levels, and many other tests. The only tests that were abnormal were my EB, CMV, & Parvo IgG titers and my Vitamin D level. Everything eventually went back to normal except for a a little fatigue, which I thought was from the fact that I had gallbladder surgery & started back to school part time in August. Fast forward to September 23rd. I was bathing my boys and getting thing ready for the upcoming week when I got what was one of the worst headaches that I had ever experienced in my life. It hurt only on the right side and behind my right eye, this headache lasted for at least 2 weeks and there was nothing that would take the pain away. I saw my NP which saw some upper horizontal nystagmus in my right eye and she ordered a CT Scan of my head which was normal. She mentioned that if I didn't feel better that I may need to see Neuro to rule out MS. During this time I experienced the same fatigue and joint pain as before but I started having a whole list of other symptoms. My vision was 'off' in my right eye, I never lost my sight, my eye felt swollen, there was pressure behind my eye, light sensitivity, the brain fog was back, I had trouble with slurring my words, finding words, losing my train of thought, trouble spelling, horrible short term memory, brain 'surges' that felt like shocks that started in my head and went through my entire body, dizziness, vertigo, tingling in my hands & feet, horrible anxiety, & ringing in my ears (which has been a chronic problem for years but it has gotten worse). On October 14th I had to go to the ER due to shortness of breath and chest pain that started in my sternum & radiated through the front part of my rib cage. At the hospital the did cardiac blood work, an EKG, & CT of my chest, all results were normal. I continued to have pain off and on behind my right eye so I went to the ophthalmologist, he didn't see anything that would be causing the pain and he didn't think any of this was related to MS because I didn't lose my vision. My list of symptoms above happened off & on, but almost daily. I started to have chest tightness that feels similar to what people say a MS 'hug' feels like, restless legs, cramps in my arms and my anxiety was through the roof, and mood swings. I saw the Neuro on 11/14 and he started the MS work up. He did blood work which included tests to rule out Sarcoidosis, & Syphilis and a Protein Electrophoresis, all were normal. He also ordered a NCV on the right side which showed carpal tunnel, this is nothing new I've suffered with it since the 10th grade. As usual all my symptoms continued and the week of Thanksgiving I started having numbness & tingling in both my legs that started at my calves and by the end of the week moved up to right above my knees. I feel this all the time and I have had a change in the feeling of my legs. For example, when I wouldn't shave my legs for a few days my legs would hurt because of the hair on them, now I can't feel that & have to touch my legs to see if I need to shave or not. Once my insurance FINALLY decided to pay for the MRI of my brain I had it done & it was normal except for 'Borderline low lying cerebellar tonsils'. At my follow up appointment he said that there is no compression due to this, this is an incidental finding (I saw the images myself and there is no brain stem or spinal cord compression that would cause problems), and it has nothing to do with my symptoms and that we are going to press on with the work up. He ordered VEP's (which I had on Monday) and a MRI of my C & T Spine (which we are fighting my insurance company for yet AGAIN) to look for lesions there, and I follow up with him in February. Oh another problem I'm having is that my big toe and sometimes the next 2 toes on both feet (the left worse than the right) go numb, to the point that they hurt. It isn't constant but at least once a day.
Any time I get too hot, mad, overwhelmed, stressed out, or worried I start to feel bad, the tingling in my legs gets worse, and I feel worn out.
During all this my home life has suffered terribly. My house is a wreck, I don't have any energy to do anything, I feel so detached from everyone, and there are times my relationship with my husband is strained and my lack of sex drive has not helped at all. He knows I don't feel well but I don't think he fully understands the fatigue/lack of give a damn(excuse my language) that I feel. I have had to hide all this from my parents because they are worriers and I don't want to tell them anything until I have all the answers possible. I have to write everything down the moment I think about it or it's gone. I have to make lists of things I have to do and places I need to go or I won't remember any of it. I have post its all over my desk at work to remind me to do stuff that is usually normal routine for me. I am on Buspar for my anxiety and it works wonders and I also take daily multivitamins.
Like I said this post is probably all over the place, I'm just tired of being in limbo and ready to have an answer. I know no one around me knows how I feel and I guess I'm just looking for reassurance that I'm not losing my mind. I don't want to be that person that everyone feels sorry for because of my condition.
Here are a few of my questions (the only ones I can remember right now)
If this is MS what are my chances of these symptoms going away completely?
If I have MS will I ever go back to my normal or should I just get ready to adjust to a new 'normal'?
If this isn't MS then what could it possibly be?
Does anyone have a diagnosis of MS with just spinal lesions?
Are the side effects of the drugs used to treat MS as bad as what I've read?
How can I put on the 'nothings wrong' face for my kids?
Any feedback is appreciated. Thank you all for your time.
Hi Amanda:
I started with amoxicillian and Biaxin I believe and was on that for 6 months followed be another different course for 6 months. I can't remember what the second course was. Anyhow, when my symptoms first started, I had had gallbladder surgery and my doc thinks the stress on my immune system caused by the surgery allowed the lyme to go unchecked and my immune system unable to keep it in control.
I had numbness in my face first followed by crazy twitching, vibrating, a hug type feeling in my torso, crazy contracting type feelings in my leg, numbness in my left lower leg and foot. These symptoms went on for about a year before I finally got tested by Igenex (after seeing MS docs). I then found a lyme literate MD in San Francisco. My Igenex results were positive with super high titers for a co-infection of erlichosis. Within a week or two of starting the ABX, the numbness resolved and I started getting much better! I went off the ABX in March 2012 because I started getting horrible acid reflux that lasted about 5 months from the treatment. Ugh...
Anyway, the acid reflux finally resolved and I saw my LLMD again last month and am still testing positive for Lyme unfortunately. My symptoms come and go but overall, I'm feeling pretty good. I have ABX and am supposed to start them but just haven't yet because I'm scared of getting another bad episode of Acid Reflux. I personally believe (and this may not be true) that once you have lyme, you always have it... How you feel depends on how well your immune system is working and how well it is controlling the bacteria. I was bit by a tick when I was about 14 or 15 years old (I'm now 50). As I said, it wasn't until have major surgery that my symptoms started.
Also, you should know that there are a lot of different manifests of lyme. There are many different diseases which ticks carry and depending on which one you have, your symptoms may be different from the next persons. I don't really have joint pain and a lot of lymies have that. My symptoms are mostly neurologicial and in addition to the crazy tingling/vibrating/twitching/numbness, I also had HORRIBLE anxiety for a while. OMG...it was over and above anything I have ever experienced!!! I seriously thought I was going insane.
Please also note that if you go to an Infections Disease Doctor, they will likely dismiss lyme as well so don't be surprised. It's very controversial. I still question whether I really have it too but I test positive for it and nothing else and the ABX did help me.
Good luck Amanda and I encourage you to visit the lyme forum. There is another really active lyme forum on healingwell.com. You can get a lot of help there too.
I started with amoxicillian and Biaxin I believe and was on that for 6 months followed be another different course for 6 months. I can't remember what the second course was. Anyhow, when my symptoms first started, I had had gallbladder surgery and my doc thinks the stress on my immune system caused by the surgery allowed the lyme to go unchecked and my immune system unable to keep it in control.
I had numbness in my face first followed by crazy twitching, vibrating, a hug type feeling in my torso, crazy contracting type feelings in my leg, numbness in my left lower leg and foot. These symptoms went on for about a year before I finally got tested by Igenex (after seeing MS docs). I then found a lyme literate MD in San Francisco. My Igenex results were positive with super high titers for a co-infection of erlichosis. Within a week or two of starting the ABX, the numbness resolved and I started getting much better! I went off the ABX in March 2012 because I started getting horrible acid reflux that lasted about 5 months from the treatment. Ugh...
Anyway, the acid reflux finally resolved and I saw my LLMD again last month and am still testing positive for Lyme unfortunately. My symptoms come and go but overall, I'm feeling pretty good. I have ABX and am supposed to start them but just haven't yet because I'm scared of getting another bad episode of Acid Reflux. I personally believe (and this may not be true) that once you have lyme, you always have it... How you feel depends on how well your immune system is working and how well it is controlling the bacteria. I was bit by a tick when I was about 14 or 15 years old (I'm now 50). As I said, it wasn't until have major surgery that my symptoms started.
Also, you should know that there are a lot of different manifests of lyme. There are many different diseases which ticks carry and depending on which one you have, your symptoms may be different from the next persons. I don't really have joint pain and a lot of lymies have that. My symptoms are mostly neurologicial and in addition to the crazy tingling/vibrating/twitching/numbness, I also had HORRIBLE anxiety for a while. OMG...it was over and above anything I have ever experienced!!! I seriously thought I was going insane.
Please also note that if you go to an Infections Disease Doctor, they will likely dismiss lyme as well so don't be surprised. It's very controversial. I still question whether I really have it too but I test positive for it and nothing else and the ABX did help me.
Good luck Amanda and I encourage you to visit the lyme forum. There is another really active lyme forum on healingwell.com. You can get a lot of help there too.
What treatment did your doctor prescribe, how long were you on it, and have your symptoms completely resolved?
My headaches aren't really an issue any more, after I had that first one (that lasted 2-3 weeks) I never had any more, but the Lyme has crossed my mind a time or two.
I forgot to mention that about a month ago I was put on Levaquin (which I read can be a treatment for Lyme) for 7 days for an infection and during that course of antibiotics I felt better than I had in months and I started feeling bad again about a week after finishing them.
I spoke with my NP today about the possibility of it being Lyme instead of MS (even with my negative titers) & she says she doesn't think it's Lyme. She originally thought that my symptoms were from Chronic Epstein Barr but wanted me to see neurology just in case. I want to do the Ingenex testing but I can't afford it right now. I guess if my neuro work up comes out negative then ID will be my next step. I am going to have some more titers drawn in the morning along with some other tests that haven't been ordered yet to see if I can get any answers. I got a refill on my Levaquin and I am going to take it for a little longer to see if the symptoms resolve.
I hate to go above my doctors and take matters into my own hands but when I feel like no one is listening I feel like it's my only option & I am desperate to feel better. I start my 2nd semester of college next Thursday & I'm going to need all the strength and energy I can get!!!
I forgot to mention that about a month ago I was put on Levaquin (which I read can be a treatment for Lyme) for 7 days for an infection and during that course of antibiotics I felt better than I had in months and I started feeling bad again about a week after finishing them.
I spoke with my NP today about the possibility of it being Lyme instead of MS (even with my negative titers) & she says she doesn't think it's Lyme. She originally thought that my symptoms were from Chronic Epstein Barr but wanted me to see neurology just in case. I want to do the Ingenex testing but I can't afford it right now. I guess if my neuro work up comes out negative then ID will be my next step. I am going to have some more titers drawn in the morning along with some other tests that haven't been ordered yet to see if I can get any answers. I got a refill on my Levaquin and I am going to take it for a little longer to see if the symptoms resolve.
I hate to go above my doctors and take matters into my own hands but when I feel like no one is listening I feel like it's my only option & I am desperate to feel better. I start my 2nd semester of college next Thursday & I'm going to need all the strength and energy I can get!!!
Hi there,
Adding on a welcome to you. And, as you know by all the responses, we definitely can all relate. I'm glad to see Lyme mentioned above here because many of the things you mention sound like a different process than MS. While there are those similarities to what you experience during, or before or after an episode, it's what you said about the virus like symptoms initially, the subsequent headaches and problems. If it were me, and knowing what I know now about MS, and experience what you are experiencing I would leave no stone unturned and see an ID doc, and a LLMD like was mentioned. It can't hurt.
You are a young mama of 3 and definitely need to feel back on track.
I hope we can help you with some next steps :)
Thanks for joining us!
-Shell
Adding on a welcome to you. And, as you know by all the responses, we definitely can all relate. I'm glad to see Lyme mentioned above here because many of the things you mention sound like a different process than MS. While there are those similarities to what you experience during, or before or after an episode, it's what you said about the virus like symptoms initially, the subsequent headaches and problems. If it were me, and knowing what I know now about MS, and experience what you are experiencing I would leave no stone unturned and see an ID doc, and a LLMD like was mentioned. It can't hurt.
You are a young mama of 3 and definitely need to feel back on track.
I hope we can help you with some next steps :)
Thanks for joining us!
-Shell
Amanda:
I was just quickly looking through the site and saw your post. I have not read all the responses to your post so someone may have already suggested this. I had many of the same symptoms you did and also tested negative for lyme by my neuro at ucsf ms center.
I did however, test positive through Igenex Labs for lyme and was treated for lyme by an LLMD and began feeling much better. You might want to reconsider lyme. You should copy/paste your story over to the lyme forum here and see if they can help you...
I was just quickly looking through the site and saw your post. I have not read all the responses to your post so someone may have already suggested this. I had many of the same symptoms you did and also tested negative for lyme by my neuro at ucsf ms center.
I did however, test positive through Igenex Labs for lyme and was treated for lyme by an LLMD and began feeling much better. You might want to reconsider lyme. You should copy/paste your story over to the lyme forum here and see if they can help you...
One of the worst things is getting your diagnosis because it can be a long rocky road. The good news is that you will sigh with a sense of relief knowing that when you do then you can start the real battle. Finding this website you have instantly connected with compassionate "experts" who have been through where you are from all over the world.
My advice to you is try not to get down on yourself too much. If the laundry doesn't get folded like it used to or if you grab a nap it isn't a bad thing. Take care of yourself. Remember, you have friends here who understand and will give you a shoulder to cry on if you need it.We have all been there.
My advice to you is try not to get down on yourself too much. If the laundry doesn't get folded like it used to or if you grab a nap it isn't a bad thing. Take care of yourself. Remember, you have friends here who understand and will give you a shoulder to cry on if you need it.We have all been there.
HI Amanda - Welcome to our little world. I'm glad you found us but sorry you were looking :-)
As Lulu mentioned there are a lot of MS mimics. Unfortunately sorting through them all can be a long and frustrating process.
For the sake of discussion let's assume it is MS. MS is not a death sentance. Many, many people with MS live perfectly normal, happy lives. I'm one of them.
You asked if your symptoms would ever go away completely. I divide my symptoms into two categories; Major and PITA (Pain In the As*). Major symptoms for me include extreme fatigue, greatly compromised leg strength, double vision 24/7. These were the symptoms that described my last relapse in the summer of 2011. A five day course of IV steroids fixed all of these.
PIA symptoms include urinary hesitancy, frequent failure to empty my bladder completely, double vision for the first 2-3 minutes of every day, neuropathic foot pain, walking outside for more than 45 minutes in the heat causes me to lose control of my left leg. These symptoms are with me every day. They don't limit me in terms of work and most play. They are more just a PITA :-) I treat these symptoms with meds not directly related to MS.
So, rthe answer to your question is yes, no and maybe :-) Yes, your symptoms may be here to stay. No, your symptoms will resolve. Maybe some will resolve and some may stick around.
The other big question you asked was about Disease Modifying Drugs (DMD's). Most of us are on, or have been on, one form of DMD or another. For me it's Tysabri. There are side effects profiles for all of the MS DMD's. As was already mentioned it's a risk reward analisys that only you can do. In the case of Tysabri the risk is PML (Progressive multifocal leukoencephalopathy). PML is a nasty little side effect that is nearly always fatal. The risk is so small that I don;t even consider it when weighed against the progression of my disease.
Do lots of reading, here and everywhere, and ask us lots of questions :-)
Good luck on your diagnostice journey :-)
Kyle
As Lulu mentioned there are a lot of MS mimics. Unfortunately sorting through them all can be a long and frustrating process.
For the sake of discussion let's assume it is MS. MS is not a death sentance. Many, many people with MS live perfectly normal, happy lives. I'm one of them.
You asked if your symptoms would ever go away completely. I divide my symptoms into two categories; Major and PITA (Pain In the As*). Major symptoms for me include extreme fatigue, greatly compromised leg strength, double vision 24/7. These were the symptoms that described my last relapse in the summer of 2011. A five day course of IV steroids fixed all of these.
PIA symptoms include urinary hesitancy, frequent failure to empty my bladder completely, double vision for the first 2-3 minutes of every day, neuropathic foot pain, walking outside for more than 45 minutes in the heat causes me to lose control of my left leg. These symptoms are with me every day. They don't limit me in terms of work and most play. They are more just a PITA :-) I treat these symptoms with meds not directly related to MS.
So, rthe answer to your question is yes, no and maybe :-) Yes, your symptoms may be here to stay. No, your symptoms will resolve. Maybe some will resolve and some may stick around.
The other big question you asked was about Disease Modifying Drugs (DMD's). Most of us are on, or have been on, one form of DMD or another. For me it's Tysabri. There are side effects profiles for all of the MS DMD's. As was already mentioned it's a risk reward analisys that only you can do. In the case of Tysabri the risk is PML (Progressive multifocal leukoencephalopathy). PML is a nasty little side effect that is nearly always fatal. The risk is so small that I don;t even consider it when weighed against the progression of my disease.
Do lots of reading, here and everywhere, and ask us lots of questions :-)
Good luck on your diagnostice journey :-)
Kyle
Hi, and welcome! As a newbie myself, hope I can navigate my way around and find your postings again.
You are absolutely NOT losing your mind!!! I SO remember that feeling - when I was still working. (Yes, and it still happens every day! LOL) My neuro sent me for neuro psychological testing which was 8 hours (over 2 days) of tests that helped determine where my weaknesses were. The results were bad enough that I got Social Security Disability immediately. (Good? Bad?) Maybe that would be helpful for you also if you get the MS diagnosis.
The DMDs do have side effects - but mainly after you have been taking them for a while are pretty minor. I took Avonex for 14 years and still had some minor side effects. However, something that really helped me that I hadn't heard about until the last year or so that I took it was that it really really helps to get well hydrated pre-injection. I'm now on Tysabri. Same with that so your veins are a bit more full and easier to get to.
I'm not a mom- but I've heard kids are really observant/smart and will probably be more worried if you don't talk to them.
This forum is great, but in-person meetings really help also. Altho the first time I went I freaked out because so many people had canes/walkers/wheelchairs/scooters. Then you read the statistics and being in a wheelchair doesn't happen to all that many of "us" But I have met so many great people. It's nice to be able to call someone on the phone and say "Am I nuts, but do you have.....? or just to talk to on a bad day." The internet can only do so much.
And things do get better. But as was said, there becomes the new normal - which always changes.
Maybe call the National MS Society and get some free publications for yourself and for your husband. Even if you don't have MS the brochures would certainly apply to your symptoms and helpful for all. Loads of great free info out there. Maybe your husband would understand a bit better?
Give yourself credit for pushing thru this. If you can afford it, this is the time to get some help at home-- a cleaning service, groceries delivered (there is only a $7. charge here for that when you order on the computer), some ready-made food for dinner from someplace like Whole Foods, drop a huge load of laundry off to be washed/folded for you and also time to call in a couple favors. Friends to look after the kids so you get a rest? And that is free!
Just try to make to make things as easy for yourself as possible. You need your energy for you and your health!
Hang tough!
Marcia =^-^=
You are absolutely NOT losing your mind!!! I SO remember that feeling - when I was still working. (Yes, and it still happens every day! LOL) My neuro sent me for neuro psychological testing which was 8 hours (over 2 days) of tests that helped determine where my weaknesses were. The results were bad enough that I got Social Security Disability immediately. (Good? Bad?) Maybe that would be helpful for you also if you get the MS diagnosis.
The DMDs do have side effects - but mainly after you have been taking them for a while are pretty minor. I took Avonex for 14 years and still had some minor side effects. However, something that really helped me that I hadn't heard about until the last year or so that I took it was that it really really helps to get well hydrated pre-injection. I'm now on Tysabri. Same with that so your veins are a bit more full and easier to get to.
I'm not a mom- but I've heard kids are really observant/smart and will probably be more worried if you don't talk to them.
This forum is great, but in-person meetings really help also. Altho the first time I went I freaked out because so many people had canes/walkers/wheelchairs/scooters. Then you read the statistics and being in a wheelchair doesn't happen to all that many of "us" But I have met so many great people. It's nice to be able to call someone on the phone and say "Am I nuts, but do you have.....? or just to talk to on a bad day." The internet can only do so much.
And things do get better. But as was said, there becomes the new normal - which always changes.
Maybe call the National MS Society and get some free publications for yourself and for your husband. Even if you don't have MS the brochures would certainly apply to your symptoms and helpful for all. Loads of great free info out there. Maybe your husband would understand a bit better?
Give yourself credit for pushing thru this. If you can afford it, this is the time to get some help at home-- a cleaning service, groceries delivered (there is only a $7. charge here for that when you order on the computer), some ready-made food for dinner from someplace like Whole Foods, drop a huge load of laundry off to be washed/folded for you and also time to call in a couple favors. Friends to look after the kids so you get a rest? And that is free!
Just try to make to make things as easy for yourself as possible. You need your energy for you and your health!
Hang tough!
Marcia =^-^=
Thank you all again for your kind words. I'm glad I found this forum and people that actually understand how I feel.
Wanted to say I'm sorry your going through such frustration but don't feel alone, so many of us are and I think that is why these forums are so wonderful so people like us have others to talk to!
Best of luck with everything and keep us updated!
Valarie
Best of luck with everything and keep us updated!
Valarie
Hi Amanda,
welcome. The others have responded to your questions, no need for me to reiterate as I agree with most of the advice and info that's been provided. I did just want to touch on the point about putting on a 'nothing's wrong' face for your kids, and I'd like to challenge the notion of the need to 'stay positive' through your tough days, unsettling symptoms and the whole diagnostic process. Frankly, I think that trying to meet the expectation to always 'stay positive' is a real disservice to ourselves. I think it's more about preventing discomfort, fear, awkwardness in those around us. Getting sick, experiencing mystery symptoms, seeing doctor after doctor , is an overwhelming and sometimes scary experience. It is normal and natural to feel overwhelmed and scared. We are lying to ourselves when we deny these feelings. I believe that allowing ourselves to experience the full range of these normal feelings helps us to get to a point of acceptance much more easily than bowing to implicit pressure to squash those feelings to protect those around us.
Of course one needs to be careful when it comes to kids; it's not fair or helpful to unnecessarily burden them, and one must be selective in how much is shared and the tone of the message. But certainly when you're not well enough to do all you would normally do with them, some explanation is needed, and should be given with a reassuring message.
I'm not suggesting that we should be wallowing in self-pity and give up all hope. Far from it. If it does turn out that you have MS, there's lots of reason to have hope, with the many treatments now available to us. I just think that it's important to allow ourselves all of the natural, normal feelings that come with coping with chronic illness. I think in the end this is far healthier than constantly putting on a happy face for those around us.
welcome. The others have responded to your questions, no need for me to reiterate as I agree with most of the advice and info that's been provided. I did just want to touch on the point about putting on a 'nothing's wrong' face for your kids, and I'd like to challenge the notion of the need to 'stay positive' through your tough days, unsettling symptoms and the whole diagnostic process. Frankly, I think that trying to meet the expectation to always 'stay positive' is a real disservice to ourselves. I think it's more about preventing discomfort, fear, awkwardness in those around us. Getting sick, experiencing mystery symptoms, seeing doctor after doctor , is an overwhelming and sometimes scary experience. It is normal and natural to feel overwhelmed and scared. We are lying to ourselves when we deny these feelings. I believe that allowing ourselves to experience the full range of these normal feelings helps us to get to a point of acceptance much more easily than bowing to implicit pressure to squash those feelings to protect those around us.
Of course one needs to be careful when it comes to kids; it's not fair or helpful to unnecessarily burden them, and one must be selective in how much is shared and the tone of the message. But certainly when you're not well enough to do all you would normally do with them, some explanation is needed, and should be given with a reassuring message.
I'm not suggesting that we should be wallowing in self-pity and give up all hope. Far from it. If it does turn out that you have MS, there's lots of reason to have hope, with the many treatments now available to us. I just think that it's important to allow ourselves all of the natural, normal feelings that come with coping with chronic illness. I think in the end this is far healthier than constantly putting on a happy face for those around us.
Yeah, what they all said. Sorry you're suffering through all of this, but thankful you stumbled into this gang. Great people here, full of care and knowledge combined. We will pray that you find solid answers and meaningful relief.
Hi and welcome if I haven't already said it in another place - that's my MS memory!
To tackle your questions with some brief answers -
If I have MS will I ever go back to my normal or should I just get ready to adjust to a new 'normal'?
With MS most of us have new normals constantly defined by our disease. For some people that can be very close to what they were like before the MS reared its head. It is so different for each and everyone of us, we really can't predict what that new normal will be.
If this isn't MS then what could it possibly be?
There are a good 40 or so look-alikes to MS. There is a health page on the differential diagnosis that might be useful to you. It is at
http://www.medhelp.org/health_pages/Multiple-Sclerosis/What-Neurologists-Must-Consider/show/1219?cid=36
We have some other great health pages too on many of the other topics you bring up. including MS and sexuality. Take a look through these and you might find answers or at least reassurances.
Does anyone have a diagnosis of MS with just spinal lesions?
Yes, it is possible to only have visible lesions on the spine and none on the brain.
Are the side effects of the drugs used to treat MS as bad as what I've read?
I'm not sure what you have read, but the DMDs are definitely a risk-benefit scenario. Every drug has potential side effects - even that wonder drug of aspirin - and often we hear the worst but not the best cases. The interferons can cause flu-like symptoms, but there are ways to help get through that icky feeling. They can also cause depression in some people, but not eveyrone. Copaxone tends to have site reactions for many people. The oral drugs also have their plus and minus attributes. We are lucky there are now 9 approved drugs to treat MS and if one isn't tolerated well, we can always switch to a different one.
How can I put on the 'nothings wrong' face for my kids?
As moms we tend to do that a lot - we try so hard to protect our kids. But it's ok to also tell your children when you don't feel well and need to rest or get a bit of assistance from them. Children are so much smarter and intuitive than we might give them credit for and they may already have their own concerns. Honesty with the kids - at the level they best understand- is always the best route.
I hope something in here has been useful and good luck with getting out of limbo.
be well, Laura
Hey, nothing wrong with expressing how you feel. It is very difficult going through all of this.
Try to relax and treat yourself to a good movie you've been wanting to see, or reading a good book.
I know how it is, believe me.
Please take care and do something nice for YOU.
Hugs
Minnie
Try to relax and treat yourself to a good movie you've been wanting to see, or reading a good book.
I know how it is, believe me.
Please take care and do something nice for YOU.
Hugs
Minnie
Thank you both for your kind words.
Val- My children are 12, 6, & 4yrs old. I plan to explain my problems to them once I do have a diagnosis, my daughter (12 yr old) is a worrier and I don't really know if my boys would understand yet so I don't want to upset them more than I have to and I want to have all the answers to their questions. The neuro I see is one of the MS 'go to' guy in Memphis, TN and I love him (his office staff is another story). He seems as puzzled as I am about all this and I think he was shocked that the MRI of my brain was normal. I try to stay positive, especially around other people, but today has been a rough one (luckily I'm home alone and don't have to put the face on).
LilMinnie- I agree that the most frustrating part is me not being the person I used to be, I think it may be worse than not having a diagnosis.
I also started taking Vyvanse (an ADHD medication) in order to help with the fatigue and concentration problems. If I forget to take it I have a really hard time concentrating on anything. I am hoping to have all my testing done by the end of this month and then hopefully some answers.
I was searching online some more today and ran across this video:
http://www.youtube.com/watch?v=-BGBSsKBrbI&sns=em
If I didn't know better I would think I was the one that posted it. She explains everything that I am going through.
I have a horrible fear that one morning I am going to wake up and not be able to walk or may be blind in one eye. I know I can't live my life in fear of the 'what ifs' but sometimes not worrying is easier said than done.
Sorry I'm rambling, I'm just having a 'feel sorry for myself' kinda day.
Val- My children are 12, 6, & 4yrs old. I plan to explain my problems to them once I do have a diagnosis, my daughter (12 yr old) is a worrier and I don't really know if my boys would understand yet so I don't want to upset them more than I have to and I want to have all the answers to their questions. The neuro I see is one of the MS 'go to' guy in Memphis, TN and I love him (his office staff is another story). He seems as puzzled as I am about all this and I think he was shocked that the MRI of my brain was normal. I try to stay positive, especially around other people, but today has been a rough one (luckily I'm home alone and don't have to put the face on).
LilMinnie- I agree that the most frustrating part is me not being the person I used to be, I think it may be worse than not having a diagnosis.
I also started taking Vyvanse (an ADHD medication) in order to help with the fatigue and concentration problems. If I forget to take it I have a really hard time concentrating on anything. I am hoping to have all my testing done by the end of this month and then hopefully some answers.
I was searching online some more today and ran across this video:
http://www.youtube.com/watch?v=-BGBSsKBrbI&sns=em
If I didn't know better I would think I was the one that posted it. She explains everything that I am going through.
I have a horrible fear that one morning I am going to wake up and not be able to walk or may be blind in one eye. I know I can't live my life in fear of the 'what ifs' but sometimes not worrying is easier said than done.
Sorry I'm rambling, I'm just having a 'feel sorry for myself' kinda day.
I just wanted to say hi and that I understand
I have wondered if I were just losing it, too! Looking back, I believe I'vehad ssymptoms for years. It wasn't until a few months ago, though, that it's as though they decided to join forces and make themselves known at the same time.
It is exhausting to try to work, take care of a family, have all of these symptoms, and go through the testing process. My house is a wreck, and I get so frustrated because I am just not the person I used to be.
I am not diagnosed with anything, and while my family is supportive, it is difficult because there is no explanation for it all.
Your post spoke to me and I just wanted to offer you support and understanding.
Hugs,
Minnie
I have wondered if I were just losing it, too! Looking back, I believe I'vehad ssymptoms for years. It wasn't until a few months ago, though, that it's as though they decided to join forces and make themselves known at the same time.
It is exhausting to try to work, take care of a family, have all of these symptoms, and go through the testing process. My house is a wreck, and I get so frustrated because I am just not the person I used to be.
I am not diagnosed with anything, and while my family is supportive, it is difficult because there is no explanation for it all.
Your post spoke to me and I just wanted to offer you support and understanding.
Hugs,
Minnie
I am sorry to hear of all your troubles....(glad you found this forum though) I am not an eloquent speech writer so bear with me. You will also hopefully get several other postings on this too. from people who have been in this boat far longer than I, that will help you.
#1 my heart bleeds for you because your situation has so many of the same things I have faced in the last year it is scary.
#2 you are NOT loosing your mind. You sound like a mother who is trying to give her all to her family and to her work and trying to scrape out any last drops of energy for herself (been there so many times) Take a deep breath and relax (as much as you can)
MS is VERY different for all of us, and each of us approaches it with a different attitude. Staying positive helps most of all in getting through the process of DX and moving down the road of therapy(s). Normal is a realitive term. but yes some of us have had vast improvement in our MS related issues so it may be possible for you to get back closer to where you were but as I said (and you know from your research) MS is different for all of us and we all react somewhat differently to treatment.
I happen to be on a DMD that has not had many side affects for me but I know others here who are on the same drug who have had a nasty reaction so research your options and always feel free to ask us our opinions if you want them there are no bad or dumb questions (thank you to whoever told me that when I joined)
You speak of you kids and putting on the "nothings wrong" face......not sure how old your kids are but I have an 8 yr old and a 4yr old. My optic nuritis landed me inthe hospital for three days.....there was no hiding it. I have to say being open, honest and up front with my kids has been the best approach. my 8yr old is my protector on many things now. I just try not to complain about things infront of them but I will discuss things with them and around them (if that makes sense) I found if I complain they react badly (either sad or acting up) but if I am very matter of fact things are better.
My prayers are with you in this challanging time but try to be strong and find a good nuro to help you.
Val
PS (having a "foggy" day myself so I am sorry if this all does not come accross well. :-)
#1 my heart bleeds for you because your situation has so many of the same things I have faced in the last year it is scary.
#2 you are NOT loosing your mind. You sound like a mother who is trying to give her all to her family and to her work and trying to scrape out any last drops of energy for herself (been there so many times) Take a deep breath and relax (as much as you can)
MS is VERY different for all of us, and each of us approaches it with a different attitude. Staying positive helps most of all in getting through the process of DX and moving down the road of therapy(s). Normal is a realitive term. but yes some of us have had vast improvement in our MS related issues so it may be possible for you to get back closer to where you were but as I said (and you know from your research) MS is different for all of us and we all react somewhat differently to treatment.
I happen to be on a DMD that has not had many side affects for me but I know others here who are on the same drug who have had a nasty reaction so research your options and always feel free to ask us our opinions if you want them there are no bad or dumb questions (thank you to whoever told me that when I joined)
You speak of you kids and putting on the "nothings wrong" face......not sure how old your kids are but I have an 8 yr old and a 4yr old. My optic nuritis landed me inthe hospital for three days.....there was no hiding it. I have to say being open, honest and up front with my kids has been the best approach. my 8yr old is my protector on many things now. I just try not to complain about things infront of them but I will discuss things with them and around them (if that makes sense) I found if I complain they react badly (either sad or acting up) but if I am very matter of fact things are better.
My prayers are with you in this challanging time but try to be strong and find a good nuro to help you.
Val
PS (having a "foggy" day myself so I am sorry if this all does not come accross well. :-)
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