How do I know what's normal anymore?

[gbfsfcity]

My name is Greg, and about three weeks ago I started feeling numb with pins and needles in both my feet. In three days the feeling had spread to my lower body, legs, and hands. I'm still able to walk, but my hands are greatly debilitated (typing this is extremely difficult).

After spending a week in the hospital, the doctors found lesions in my spine and brain that they believe is being caused by ms. Other than a vitamin d deficiency and certain proteins found in my spine which often indicates ms, all other test came back negative.

The symptoms seemed to be noticeably milder four days ago, but for the last three days my symptoms seem more intense than ever. My optimism has suffered as a result. I've always been positive and patient person, but I broke down yesterday sporadically while I was in the shower.

I'm 29 years old and I've never felt so terrified, it feels like this attack will never go away. Is it unusual for the first attack to last so long? Does stress prolong episodes? They don't want to treat this attack at the hospital, but is there anything I can do at home to help manage or alleviate this?

Any help is greatly appreciated, but I do understand that there are no concrete answers when it comes to ms.

Thanks

Greg


**Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.**

[golfwidow]

Hi Greg,
So sorry you are going through this.

When I am having an active attack I try to get more rest, (even a catnap here and there) (preferably laying down as opposed to in a chair), keep my water intake up, avoid being in the heat, try to do something relaxing and fun. I do keep moving as much as I can without overdoing. The hard part of this disease is learning to balance old normal with new normal. And some days I am still in denial.....then I find I have overdone.

I do not totally isolate myself because I have found that when I do, I start having a major Pity Party ! Sometimes being with friends helps ( even if it is for a short time).
Hopefully others can give you more suggestions.

I hope you get answers soon.
This is a good place to look for resources. I found this site when I was first dx'd with MS and have found it to be a wealth of info and good humor !!

Oh, did I say keep your sense of humor ??? Yes, that helps take the edge off the serious part of this.


Sometimes time is your best friend, especially in a relapsing/remitting type of MS.

Questions for you :
Did you have any kind of steroid treatment in the hospital ?
Do you have a neurologist that treats MS primarily ?
Has anyone suggested DMD treatment ? ( Disease Modifying Drug)
AND.......have you gotten a second opinion ???

There are lots of folks with more knowledge on this website than I. Just giving you feedback on how I deal with things.
Hang in there, you are not alone

[Thinkimjob]

You're probably feeling hyper-sensitive to your physical symptoms at the moment, which is entirely normal.

All you probably want is what no one can provide. I know I did. But, as you know, no one cantell you how long a flare will last, or how your individual case will progress or which drug will work.

It's bad, I know. If you feel like sobbing your heart out, do it.
That said, it's probably not going to be as bad as you fear. I was diagnosed at 28, in a week, like you. I was like a stunned mullet.

I read everything I could, utterly obsessed about it.

I'm 42 now, and apart from a couple of mild flares and a lot of fatigue, I hardly knew I had MS for the first 10 years.

You probably felt better in hospital because you weren't doing much, and now you're out and you're tired.

And you're home and reality is hitting.

You will feel better, one way or the other.

[rdmc]

Hi Greg,

You've gotten good advice...I'd say the main thing is to find out if they intend to treat this flare with steroids, which is normally what's done.

But I wanted to say this. You mentioned you broke down in the shower. I was just wondering if you noticed your symptoms were intensified in the shower. A lot of us are heat sensitive and a warm or hot shower can make your symptoms get worse...it doesn't cause any permanent problems, and those symptoms usually calm down once you cool down, but if you're new to MS, you might not realize that. It took me a long time to figure out how I had no problem stepping over the tub into the shower, but once the shower was over I couldn't step back out without help. Just thought I'd mention that in case you're finding hot showers make your symptoms worse.

Stick with this board, keep asking questions, there are all kinds of "tricks of the trade", so to speak, to help you navigate the maze that is MS and help with the uncertainty you're feeling now. It's perfectly normal to feel like you're feeling when first diagnosed.

[gbfsfcity]

Thanks for your reply!

This is all very recent for me. The doctors didn't think my symptoms are serious enough for steroids. They want me to watch out for new or progressing symptoms before they resort to steroids.

I'm not sure what qualifies as new symptoms. I've had headaches, balance, and nausea issues for the last week, but I'm not sure if they're symptoms of ms or a side effects from the lumbar puncture (spinal tap). How would one even go about determining whether their depression is a symptom of ms, or a result of the diagnosis?

I'm seeing a ms specialist in a few days. As bad as it sounds, I'm humoring the idea of passing on the DMD treatment until a relapse confirms this is ms. To be honest, I've never been thrilled about the notion of regular medication, I don't even take Tylenol. I'm just terrified that the stress caused by daily injections will be more harmful than the benefits. Does anyone have success with alternatives?

I'm waiting for my medical records to be realized, then I'm going for a second opinion. My parents are insisting that I do, which is understandable, but at the same time, it feels like their in denial about my situation.

The uncertainty is the most difficult part for me. I feel isolated by my family who refuse to accept the diagnosis, and depressed by the grim responses of the people who do. I just feel like my own worst enemy right now (no pun intended). Is it crazy to think that my symptoms are linked to my attitude about all this?

Greg

[gomer]

My personal response to your question; ........................................... regarding "normal'...

As a MSer I consider NORMAL a moving target....

Normal may stop moving for a day or a year, it may move fast one day and slow other times. If there is one thing constant about MS NORMAL, is that it is no longer a constant.



Gomer Sir Falls-a-lot

[golfwidow]

Greg,

It is a good thing to go for a second opinion, glad you already have that scheduled.

You could be feeling the way you do because of the lumbar puncture.......and the news you have been given. All mixed together it is pretty daunting. I think most of us found the first weeks or so the hardest. You will see people say " I may have MS but MS doesn't have me".......It sounded corny when I first saw it.......but I get it now. Don't let MS ( or any disease) define who you are.
And a word of caution.........although I am not one for secrets, I would not tell "the world" for a while. Let yourself regroup first.
It is good to have the support of your family, but give them time to adjust as well. They are probably in denial at this point.
Hang in there, come here when you need a kind word or have a question. Let us know how the second opinion goes.

[gbfsfcity]

But I wanted to say this. You mentioned you broke down in the shower. I was just wondering if you noticed your symptoms were intensified in the shower. A lot of us are heat sensitive and a warm or hot shower can make your symptoms get worse...it doesn't cause any permanent problems, and those symptoms usually calm down once you cool down, but if you're new to MS, you might not realize that. It took me a long time to figure out how I had no problem stepping over the tub into the shower, but once the shower was over I couldn't step back out without help. Just thought I'd mention that in case you're finding hot showers make your symptoms worse.

Thanks for your advise.

Quite honestly I can't tell if the heat from the shower is making things worse. That was just a bad day all around.

I'm a frequent bike rider, and before my breakdown I attempted an easy ride with little success. I've been struggling to do simple things such as button my shirts and tie my shoes, but those things are merely annoyances. My bicycle has been a passion of mine ever since I was a kid. I felt like I was being robbed of something that defines me. Even though I knew that ride wouldn't be good, the reality hit me hard.

For now I'm taking it easy and feeling this out, but I'm not deterred yet! If I have to relearn how to ride my bike than so be it! I've never been one to think I could go through life without any pain. The only thing in my life I can control is my attitude. That will remain true whether I have ms or not.

[twiztidchic]

Greg
I too have recently been diagnosed. And I too broke down last weekend for a few days. I was missing out on things that I enjoyed. Fortunately, I am the type of person that moves on quickly & tries to figure out how to work around my issues. It's a scary thing at first. There are so many unknowns. But it is unknown. So I try to think that there is nothing I can't handle. And I will figure out how to deal with whatever is thrown at me. A good support system will definitely give you an extra edge to fighting through this. I had my first flare 3 years ago and I have not started a treatment. Now, I am scheduled to see a neurologist who specializes in this. And I am ready to start the treatment. I was in denial the past few years. And then it was confirmed. Keep asking questions. And keep checking the bulletins. The chat room has also been adventageous. I have been able to ask questions that I may not have found a direct answer in the bulletins. Keep your head up, rest and take it day by day. Good luck!

[golfwidow]

The only thing in my life I can control is my attitude. That will remain true whether I have ms or not.

You have just conquered a huge battle knowing that one fact !!!

[Oz]

Greg,
Your symptoms are exactly what were my first indications of MS also. That was 4 1/2 years ago. I also didn't have steroid treatments & was told I probably had MS. It took about 10 weeks for me to have complete recovery. 7 months later my left arm went numb, this is when I was diagnosed. I had the steroid treatments and started copaxone.
My family was & some still are in denial and they struggle when it appears that I am fine, but I am so fatigued I can't function or every limb aches. 3 weeks ago I woke up with vision loss in my right eye. It is optic neuritis with significant loss. And thus far, no improvement!
Remember that it is important to be able to talk about it, cry about it and sometimes even yell about it. You will adjust and you will come to know what your body can and cannot handle.
My thoughts and prayers will be with you!

[gbfsfcity]

Greg,
Your symptoms are exactly what were my first indications of MS also. That was 4 1/2 years ago. I also didn't have steroid treatments & was told I probably had MS. It took about 10 weeks for me to have complete recovery. 7 months later my left arm went numb, this is when I was diagnosed. I had the steroid treatments and started copaxone.
My family was & some still are in denial and they struggle when it appears that I am fine, but I am so fatigued I can't function or every limb aches. 3 weeks ago I woke up with vision loss in my right eye. It is optic neuritis with significant loss. And thus far, no improvement!
Remember that it is important to be able to talk about it, cry about it and sometimes even yell about it. You will adjust and you will come to know what your body can and cannot handle.
My thoughts and prayers will be with you!

Thank you,

I'm actually a bit curious about my symptoms. My numbness and tingling started in both feet, then moved into both legs, then into my hands, and lower torso. Both sides of my body are equally affected and there was a consistent onset of numbness spreading from the longest ends of my nerves.

From what I can find, ms seems to affect one or more limbs more sporadically. I haven't read about anyone experiencing peripheral neuropathy in such a consistent manner. Did your symptoms follow the same process? Has anyone heard of numbness that was consistent on both halves of the body and consistent in spreading from the longest end of the nerves?

I've been reading about Guilllian-Barre Syndrome which now seems like a possibility as well.

[Thinkimjob]

My numb legs are both in it together. The numbness still comes and goes. I can feel it creeping up from my feet when it starts.
Sometimes it gets evenly up past my waist. It's not permanent.
My lovely limp is on the left side. That is here to stay. That, I think is a spinal lesion.

[Redwings]

Hi Greg:
You're correct that MS tends to be more asymmetric at initial onset, even if the symptoms are bilateral (that's because the body is wired in discrete halves.) However, that isn't always true. In transverse myelitis (transverse meaning "extending across") of the spinal cord, an area of inflammation extends across the neurological midline, so effects occur on both sides of the body at the same time. The signs/symptoms might be symmetric or somewhat asymmetric, partial or complete, depending on which nerve tracts are affected. It's a bit more complicated than that, but I think that gives you a general idea of how MS and other inflammatory conditions can affect both sides of the body at the same time in approximately the same places.

The polyneuropathies (like Guillain-Barre syndrome) and peripheral neuropathies can manifest more symmetrically. The presentation is a clue to the cause, but not sufficient to make a diagnosis from. That's what the MRIs and other tests are for. I agree that a second opinion in a timely manner will be valuable.

[spoiledbrat]

Actually your current symptoms were the exact same ones I experienced about 3 months ago. However, they were new for me and not a first symptom.

When I called my neuro to ask if this was a symptom of M.S. my nurse said, "Yup, that's M.S." and laughed. I have gotten use to this response so I do not take it to heart and laugh with them.

The meds they have for this either will work or will not. The hospital would not give you these particular drugs as they are not neurologists and with this disease hospital staff is just not able to give those drugs without a full history and to see the definite diagnosis. That would be like the emergency room giving chemo for someone who came in with cancer symptoms. They were not the ones who diagnosed you.

I only break down when I have new symptoms or long lasting relapses. It is like the wake-up call. At some point there is what they call the "mourning period" where the true realization of the disease takes affect and people will become very emotional and at times depressed. Many other realizations come during that period as well. My mourning period took almost 10 years to occur.

M.S. is a disease where you never know what will happen next. You could be fine after a week, month, year, never. I always believe that everything will go away at some point. Even with the same symptoms you are having I was shocked and concerned when they did not subside and grew in intensity instead. Once they did begin to subside, they started to come back once I had realized they had subsided HA! However, they did not come back as strong and they are going away once again.