my symptoms started a month ago. numb from neck down and felt like i had a belt around my chest. went to hospital and was admitted. found one lesion in my neck. i had a spinal tap, then horrible headache, another mri a week later and found another lesion. i got spinal tap results and were positive for o bands. so i already got a diagnosis after a month. is this common? I tried to go back to work full time this week and failed im so tired and i dont know if im losing my mind from the ms or from all the medication. a month ago i was a thirty year old women full of energy and thought i had overcome the worst, now i dont even recognize myself and dont know what is going to happen next. Im watching my husband do everything and cant help completly broke and unable to work full time. I want to know if my initial syptoms (symptoms) are worse than others or normal???? my neuro says im in the middle but a new lesion after a week seems pretty progressive to me.
Welcome to our forum. I am sorry for your diagnosis, it's no fun and it's especially hard the first year after diagnosis b/c everything is so foreign.
Most people when first diagnosed are dx with RRMS (remitting relapsing MS), which means your symptoms come and go depending on the state of your immune system and the activity of your lesions. What that really means is that there will be times when your disease flares or you go into a relapse and you have symptoms or an increase of symptoms. Dr's usually put MS'ers on IV steroids to help w an exacerbation of symptoms. Everyone is different but it may be weeks to months before you begin to feel "normal" again.
The time period between relapses varies with each person and can be helped by drugs that MS'ers take to lengthen the time between relapses. Are you on any drugs yet? If so, what are you on? Of course the goal is to have a long period between relapses...it could be months, years or decades before your next relapse.
Everyone is different in the symptoms they exhibit. Some have eye problems, many have fatigue, some balance issues, some spasticity, some brain fog, many have heat intolerance, some MS hug, some numbness, the list is really long. Some have all of those and much more. Everyone is unique so there is no "common" per se. I will say your sx are not uncommon at all. Fatigue is extremely common.
Some people (the lucky ones) are dx quickly but for many people it can take years since MS is a dx of exclusion. Most people have had MS a lot longer than just before they were dx even if their symptoms were not obvious.
As far as numbers of lesions go, one is the best you can have with MS. Most have many and some have dozens and dozens. Of course you don't want a lot of lesions but the location of the lesions is more important than the number.
Again, I am so sorry. It will take a while to get use to what has happened to your life but slowly, I promise, things will begin to level out and you will regain yourself again. Keep coming here. This is a great place to get some answers and get support.
I don't know much about all the medical terminology and stuff but I feel your pain... I can tell you that it's not very common to get such a quick diagnosis... but then again most of us don't get lucky enough to have such an aggressive doctor right from the get go... I'm so sorry you have this diagnosis and I pray that they will get you started on some medications to slow the progression down as quick as possible... There are also meds to help with the fatigue... I wish you the best and please keep us posted on everything...
Now Sit down and breathe... You've been in a non-stop whirl wind from the on set... At least that's what it sounds like to me... Hang in there and we are here for you any time... I may not know much but I'm a very good listener...
Very sorry to hear of your diagnosis. Unfortunately it's impossible for anyone, including your doctors, to say how bad - or not - your MS is. The speed at which you were diagnosed is fairly unusual I think. Your story is similar to mine in that regard but there are so many stories of dx being delayed years. So the good news is that early treatment yields better results and you have the opportunity for early treatment. Have you started a disease modifying therapy yet? It's your best shot at slowing things down. In my first year I had 3 major attacks; have been on Copaxone since June 2008 and am currently having my first attack in 2.5 years, and this one is definitely milder than previous ones. I understand what you're saying about watching your husband doing everything; it is difficult but you are ill and your first priority needs to be rest and recovering from this attack. Hopefully he is understanding and able to take on a little more than his share right now, Remember your wedding vows, in sickness and in health. I'll bet if the shoe were on the other foot you'd be taking good care of him. It's a scary time being newly diagnosed; try not to dwell on the worst case scenario that may not ever happen. I hope you stay connected to this forum as you will find it to be very informative and supportive.
I am sorry for your dx but not sorry you found our little corner of the web. If you haven't already can you have a read of our health pages, top right of your screen, the yellow icon. There you will find answers to many of your questions and probably some you haven't even thought of yet, its well worth reading.
Its highly probable that the first MRI was done whilst lesions were still forming, the same attack,1 lesion showed up on the first MRI and then another showed up a few days later. The tight banding feeling around your chest is known as the MS Hug, dumb name but thats its name. The other sx you mention are fatigue (tired x infinity) which will be worse during a relapse but will calm down somewhat, though you will need to pace your self and be aware that getting hot will exaserbate the fatigue.
The loosing your mind part could be 'cog fog' or because this is all new to you, you'll be in an emotional roller coaster not only because of getting a dx but because of the MS. Anxiety about the future, situational depression etc isn't unexpected when dx so please keep this in mind (pardon the pun), seek help if you even suspect that this could be going on, do not suffer in silence, PLEASE!
MS is a mysterious disease but unlike years gone by people do not in the main end up in wheelchairs, yes some do but that is more because of not having the DMD's available to them soon enough or them having a progressive type of MS. The majority of MSers dx today, live life as they wish, do what they wish etc their MS is managed, they live smart and they live well, and you can too!
You want to know if your progressive or not, in my opinion there is nothing to suggest (at this stage) that your first attack is anything but common. RRMS is the most common form of MS, your in full relapse now, and you will not know for weeks or months how much better you can get, so BREATH! One hurdle at a time or else you'll get overwhelmed.
Welcome:) I am glad you found this forum! About 4 months ago I found it and it has helped me immensely. I too was just recently diagnosed with the same question as you. For me, researching and learning as much as I could about MS helped me through the acceptance that I have MS. You will most likely go through all the stages of loss (for us it is a loss of what we have envisioned for our future): denial, anger, acceptance, etc. In any order!
I went to my doctor thinking I had a pinched nerve and that night after just having an MRI I found out I had MS. SHOCKING! So I really can emphathize (not sure how to spell that, LOL) with you. I had 3 spinal lesions. A month later my MS neuro ordered a brain MRI and I have 15-20 brain lesions. This is where Julie was right on: I seem to have quite a few lesions with little damage or symptoms. I have numbness and tingling in fingers and L'hermittes along with some weakness and pain in feet. It is very mild for me. Basically it doesn't matter how many, but where the location of the lesion is. I think of it like our brain is a mine field and pray that the lesions keep missing those bombs!
In May I started on Copaxone as my first DMD. It was the only one that didn't have flu like symptoms. With my kids just getting out of school for the summer, it was the best choice for me so that I could still function and have fun with them. I hope that you can get started on one soon - it really is the best way to keep this ugly monster at bay!
I am sure you are in a funk right now and have every reason to be! Just remember to keep your chin up - it will get better. There is a light at the end of the tunnel. Please keep in touch with us and let us know how you are doing.
Hi. I had to respond to your post. I was told on June 1st that I PROBQBLY have MS by the ms specialist. I have another appt on Monday. I can definitely identify with you. I have four children and my husband has been picking up the slack big time.
The only thing I can say is to let him. You will learn what you can do and what you can't. I find that if I try to do too much one day, I am totally useless for a couple of days. Try to prioritize what really needs to be done. If your husband really hates doing something specific, then make that the one thing you do that day.
As for work, I was teaching full time when this all strafed. I had to go to part time. Unfortunately I didn't have a choice. Like many others have said, things change. I am also wondering wht type of ms I have since it seems to not be remitting but the truth of the matter is, is that I have it. Learning how to live with the new normal is the hardest part.
My first emotion was hewing grateaful that I was being taken seriously and not passed over like so many others on the forum. My second question was why is this not stopping. My third question ws what can i do on a daily basis to improve my quality of life and the lives of my family. It is really difficult but if you stay on this forum, you will get a lot experience, strength and hope that you will onto find anywhere else. Especially in a doctors office.
I am so sorry that you are going through this. I agree that the worst part is the uncertainty day by day but that is just the wy it is. We are on this path together.
Like I have been told by many on the forum, keep asking questions. No matter how silly you may think they are. Someone here is bound to have the same question or going through the same thing.
You've helped me a lot today and for that I am thankful.
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