Aa
New Relapse
I am going through a relapse and I guess the scarey part for me was I did not realize that I was going through one. It was very different from the initial out break that I had that lead to the MS dx. I am told I have a very high tolerance for pain. This time I had sight blurred vision in both eyes. But for the most part the pain I experience all the time just intensified over about a 3 week period with extreme burning in my hips until I just could not sit or stand. Had my yearly check up to find that had no feeling in the lady area. This is what prompted me to call my nuro. He right a way put me on IV Solumedrol. I had to wait all weekend to get the IV treatments (because I was NOT symptomatic enough) for the hospital to do them on weekend. Once I had the first IV treatment I noticed a huge difference. Pain was back to my normal levels by end of the day. My question is did I wait to long to call Doctor? The relapse was only 8 months from the first outbreak. Is there any meaning to the short term between the two? Should I request new MRI's or just wait until September for my scheduled scans? From everything I have read and learned from my doctor I don't think it is necessary to do the MRI's until September but being so new to this I just not sure.
I was told by my neurologist that multiple attacks in the first year common. My first two were separated by five weeks. That left my head spinning for a while as it seemed like that might just be the way it was going to go until body fell apart entirely! Thankfully, I stabilised soon after, but the Chicken Little 'the sky is falling' mindset took a LOT longer to get over and make peace with. I'm convinced MS is nearly as much of a mental challenge as a physical one.
The 'when do I ring the doctor' is an important question, one I'm still teasing out myself. Not the most helpful thing to tell you, I know, but at least know that someone is as confused or conflicted about it as you are.
The 'when do I ring the doctor' is an important question, one I'm still teasing out myself. Not the most helpful thing to tell you, I know, but at least know that someone is as confused or conflicted about it as you are.
Corriel,
Wow 3 attacks, bless your heart. You are strong! I thought I was doing so well until this last attack. I doing better know and feel less stressed about it. I have to give some credit to my supervisor. She is a friend also and she has some medical back ground (2 sisters that are RN's) and will push me when she thinks I am getting to far past what is tolerable. She knows me very well and knows I would just wait it out. And I can't say it enough the people on the sight are keeping me on track also. I don't feel alone in my travels through this disease.
Leanne
Wow 3 attacks, bless your heart. You are strong! I thought I was doing so well until this last attack. I doing better know and feel less stressed about it. I have to give some credit to my supervisor. She is a friend also and she has some medical back ground (2 sisters that are RN's) and will push me when she thinks I am getting to far past what is tolerable. She knows me very well and knows I would just wait it out. And I can't say it enough the people on the sight are keeping me on track also. I don't feel alone in my travels through this disease.
Leanne
Alex,
Yes, I feel like everything creeps up on me. And I don't like to call the doctor for everything. This is why I waited so long to call. Also wanted to let you know that I tried the tea you told me about. Tea and Honey is know my new drink in the mornings. Coffee still makes me sick so I just stopped drinking it.
So many changes.......
Thank you!
Leanne
Yes, I feel like everything creeps up on me. And I don't like to call the doctor for everything. This is why I waited so long to call. Also wanted to let you know that I tried the tea you told me about. Tea and Honey is know my new drink in the mornings. Coffee still makes me sick so I just stopped drinking it.
So many changes.......
Thank you!
Leanne
Artanis,
Yes I have been on Copaxone since February. I have had no problems with the injections they are easy (I do not use the auto injector any longer) I manually inject know. The injector give me dimples and spots that looked like a tan mark. No side effects that I can tell anyway from the drug. I also take tramidol daily for the normal daily discomfort of the nerve pain. I was not sure I wanted to do the steroid treatments again but the blurred vision decided it for me. I work full time and have to drive sometimes (most of the time I ride with my husband). I have already lost hearing in my right ear so keeping my vision intact is a personal goal of mine. It has been a rough two week span as my body does not do well on the steroids. But the fast work it did on the pain was worth the other side effects that the steroids cause. I have yet to see my Nuro since he had me do the steroids again. My next appointment is beginning of June.
Yes I have been on Copaxone since February. I have had no problems with the injections they are easy (I do not use the auto injector any longer) I manually inject know. The injector give me dimples and spots that looked like a tan mark. No side effects that I can tell anyway from the drug. I also take tramidol daily for the normal daily discomfort of the nerve pain. I was not sure I wanted to do the steroid treatments again but the blurred vision decided it for me. I work full time and have to drive sometimes (most of the time I ride with my husband). I have already lost hearing in my right ear so keeping my vision intact is a personal goal of mine. It has been a rough two week span as my body does not do well on the steroids. But the fast work it did on the pain was worth the other side effects that the steroids cause. I have yet to see my Nuro since he had me do the steroids again. My next appointment is beginning of June.
Hi there!
As has been said MS is differet for everyone. I had 3 attacks in 10 month (and was diagnosed after the second attack).
I wait to go to the neuro until it goes on for a couple of months or it leads to something that seems really wrong that doesn't go away within a day or two.
I am glad you found some relief and try not to stress too much it will just make your recovery longer. Inflammation is very strong in early MS so frequent attacks can happen.
Corrie
As has been said MS is differet for everyone. I had 3 attacks in 10 month (and was diagnosed after the second attack).
I wait to go to the neuro until it goes on for a couple of months or it leads to something that seems really wrong that doesn't go away within a day or two.
I am glad you found some relief and try not to stress too much it will just make your recovery longer. Inflammation is very strong in early MS so frequent attacks can happen.
Corrie
Hi firerescue.
I had a similar experience of relapse quickly after dx - 3 months. In my case I did know that something was up, but I was having the flu at the time, and wondered if that had caused it. Apparently not, but in any case, I did not end up taking any steroids, which was my choice after some discussion, and reading up here. I decided I could deal with the symptoms and forego the steroids, which are hard on your system, although sometimes a good call. I just thought that my relapse was not bad enough to warrant it. Taking the steroids only shortens time, it doesn't change outcomes, although....I have gotten the gist that when your eyes are involved, they prefer that you do them. Others will chime in on that bit I'm sure.
I did ask the same thing of my doc, what does it mean that I relapsed so quickly after diagnosis AND a mere 3 weeks after starting Tecfidera. He said the med had not yet reached therapeutic levels, so we couldn't tell if it was working or not, and that we should continue on it until the scheduled MRI to check progress. He did however, send me for an MRI right then when the symptoms were happening, and I did indeed have 2 new lesions in just the right place in my brain to give me the symptoms (motor, right side leg) that I was experiencing. I would think your neuro might want to do the same. I would certainly ask him about it.
Are you on a DMD at the moment?
I had a similar experience of relapse quickly after dx - 3 months. In my case I did know that something was up, but I was having the flu at the time, and wondered if that had caused it. Apparently not, but in any case, I did not end up taking any steroids, which was my choice after some discussion, and reading up here. I decided I could deal with the symptoms and forego the steroids, which are hard on your system, although sometimes a good call. I just thought that my relapse was not bad enough to warrant it. Taking the steroids only shortens time, it doesn't change outcomes, although....I have gotten the gist that when your eyes are involved, they prefer that you do them. Others will chime in on that bit I'm sure.
I did ask the same thing of my doc, what does it mean that I relapsed so quickly after diagnosis AND a mere 3 weeks after starting Tecfidera. He said the med had not yet reached therapeutic levels, so we couldn't tell if it was working or not, and that we should continue on it until the scheduled MRI to check progress. He did however, send me for an MRI right then when the symptoms were happening, and I did indeed have 2 new lesions in just the right place in my brain to give me the symptoms (motor, right side leg) that I was experiencing. I would think your neuro might want to do the same. I would certainly ask him about it.
Are you on a DMD at the moment?
Often we realize we are having symptoms after a awhile not immediately. Sometimes thing are caused by something else beside MS. Next time you will probably pick up on it sooner. I am glad the steroids helped with the pain. Steroids only deal with symptoms. They do not effect MS as a whole so you did not do damage by waiting.
There is no correlation between how long or short your remissions are and MS progression. With every case of MS it is different. Most likely it is inflammation and not nerve damage. Especially since it went down with steroids which would not happen with nerve damage. I would wait on the MRI. If your doctor thinks you should have one sooner then have it sooner.
With me I never go to a doctor right away because things sneak up on me. When they ask how long something has been going on I say oh a few months. Some people would notice something is off right away. It also took me awhile to figure out which were MS Symptoms. Especially since everyone's symptoms are different.
Alex
There is no correlation between how long or short your remissions are and MS progression. With every case of MS it is different. Most likely it is inflammation and not nerve damage. Especially since it went down with steroids which would not happen with nerve damage. I would wait on the MRI. If your doctor thinks you should have one sooner then have it sooner.
With me I never go to a doctor right away because things sneak up on me. When they ask how long something has been going on I say oh a few months. Some people would notice something is off right away. It also took me awhile to figure out which were MS Symptoms. Especially since everyone's symptoms are different.
Alex
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