This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello Everyone,

It's hard to know where to start except to say I need the support and advice of others who understand what it's like to deal with MS.

I'm 51, 'old' for MS to begin as one out of four of the neurologists I have seen told me. Never having been sick other than stuff my five kids brought home from school and hospitalization for childbirth, having to inject myself with Betaseron every other day has floored me.

I am not sure I will have the stamina to post details of my MS tonight. I'm wondering if someone could help me get a sense of how aggressive I should be communicating with my neurologist and what to communicate. It is hard to be the patient and your own advocate at the same time but that's what I have to do.

I'm only four months into MS and all kinds of strange and scary things and feelings happen. I don't even know what kind of MS I have yet. What do you report to your neurologist, internist, and/or turn to a support group for help with? For example, today I had a lot of stomach pain and was the most depressed and tired ever...but who in the heck is the 'right' one to talk to?

Do any of you carry a letter from your neurologist or wear a chain stating you have MS? I had one episode in which my vision doubled and all I could do is lay on the floor with my eyes covered until it went away. I try to have one of my kids with me in stores but that's not always possible. One fear I have is that this will happen in public and an ambulance will be called, who can do nothing and charge for it. I also might appear slow and possibly intoxicated to police if pulled over and could not walk a straight line...from MS.

This whole thing is like a bad dream. I got to live probably 2/3 of my life, marriage and kids, with normal health until age 51. I feel fortunate if this was meant to be that it didn't happen when my kids were much younger.

Dear God I don't want to be a burden on my kids...

Wendigo,

Welcome! It sounds like you are dealing with everything at once right now and it sounds like it's overwhelming. One of the things that you will probably realize eventually is that it is impossible to try and contact someone with every thing that is happening. I usually run everything through my neurologist and go from there. However, I don't present anything to him that doesn't stick around for at least 4 days to a week. There are so many things that will wax and wane with the temperature, the amount of rest you had the night before, the amount of effort you exerted, and other things, so trying to report everything is not only impossible, but probably counter productive. At least that was the case with me. I was driving myself insane taking note of every little thing that I felt, even if it passed in a day or so.

Just try and take a deep breath and learn as much as you can about MS. As they say, Knowledge is power, and there is just about anything you can think of contained in this forum. I am freshly coming out of a spot like you sound like you are in, so I can relate to the fear and uncertainty that you are going through. Even though I've had MS for a while, I didn't start showing anything more than nagging symptoms until here in the last year and a half. It does indeed scare the hell out of you. Somewhere in there I moved a bit more into the "OK, I really have this" mode and became quite a bit less anxious.

This forum has helped me immensely with acceptance, as well as with gaining knowledge about my condition. If you participate regularly and ask lots of questions, you can learn a bunch from this community. No one will bat an eye at what you may think is the oddest of inquiries because we are all in this together. So welcome to the forum! Use it to your advantage to learn how to better live with this crap and know that everyone you deal with in here is pulling for you.

Hi, Loobie, and thanks for your warm welcome to the board.

Another overwhelming aspect is that I am disabled from my ability to earn a living as a medical transcriber, something I've done since 1985. The 'higher' functions of the brain necessary to process information rapidly and accurately are greatly diminished. The left hand is basically useless for fine movements necessary for high speed, accurate typing over long periods of time. Following a cursor rapidly on the screen for long periods blurs my vision horribly. My only other skill has been as a hairdresser many years ago, but who needs a one-handed hairdresser?

Social Security Disability I've been told to wait about a year to apply for since the diagnosis is new and effects of treatment and PT have not been established yet. I have been warned most cases are denied but won on appeal, possibly taking years and sometimes needing an attorney. My father wants to get a lawyer now but I told him it would be a waste of money at this point.

Blue Cross is trying to say this is a pre-existing condition and I have no idea what they will eventually pay or not. I'd chosen a generic drug plan, which I'm sure Blue Cross is doing cartwheels over but stopped me from being able to know what infusion Solu-Medrol would have done to help me. I had to take generic prednisone tablets instead.

Some days it's all too much to bear.

I hear you. I've been dealing with some of the exact same things in the last two years. I'd been a plant manager in the automotive industry for about 20 years. While it's not back breaking labor type work, it requires a great deal of intensity and lots and lots of walking on concrete. I have been the only breadwinner for many years and I had been used to making damn good money for a long time and my lifestyle was not something I wanted to give up. I ended up switching companies and going back into engineering where I started. I took about a 15k pay cut, but absolutely love not being in a pressure cooker of almost ridiculous amounts of stress. So what I thought was the end of the world turned out OK in the long run after we made some slight lifestyle adjustments. I don't have to think on the fly and under the gun in terms of the clock and I don't notice my brain fog nearly as much now since I can spend time analyzing things instead of having to make decisions with many data inputs on the spot.

What I'm really trying to say is that you will be OK if you don't give in to helplessness. We are slowed down, but not dead and coming to grips with that has allowed me to move out from under it somewhat. Nobody is born with the tools to deal with the diagnosis in the best possible way. You have to stumble around in the dark alot until you find what's going to work for you. Are you still married? Having a good support system at home can be a valuable asset for those times when you are a stark, raving lunatic. I'm not suggesting that everyone goes through that phase, but I sure did. I found out again that I had emotions, and they took over for a while and I was completely lost. My wife and daughter brought me back, but I had a rough go of it in terms of accepting that I really do have this.

I don't know if you know much about addiction, but the dynamic was similar to the 1st step in recovery for me. Until I admitted that I had the problem and that there were times when I was going to be powerless over it, I was fighting it. That was getting me nowhere fast. There are many ways to combat this disease, but for now there is no way you can fight and be "cured" and back to normal. That's where I was. I was fighting a futile fight and it was doing nothing but making me angrier and angrier. I am in a spot right now where I am somewhat at peace with it. I will never say (and this is kind of AA'ish too) that I've accepted it fully and everything is ok now. That's like a drunk proclaiming that they will never drink again. Like in recovery, you have to take it one day at a time.

That is just a catch phrase and bumper sticker until you get to the point where you allow yourself to enjoy a good day instead of ruining it by dwelling on the fact that tomorrow may absolutely suck. Then you will understand the one day at a time thing. At least that's how it has worked for me. Since I'm not a person prone to depression, I was basically just pissed off all the time. That's my depression; anger. But then when my wife pointed out to me that I was moving into showing signs of depression, I knew I had to try and start working differently on this. What it took for me was realizing that while all the nasty stuff that CAN happen with MS may happen to me too, it hasn't happened yet. That allowed me to start enjoying the things I was letting slip by me by dwelling on what COULD happen. With this crap we need to deal with what IS happening. More living in the moment and lots more realizing that I, and everyone else for that matter, have 0 control over the future.

It's letting go of power that we were under the illusion that we had. If it wasn't MS, it could have been any number of things or nothing at all. But it is MS for us and learning how to live with it is the only path since there simply isn't a way to get rid of it. I hope and pray every day that "they" find a way to get rid of it, but until that time comes, I have to find a way to smile and joke and laugh when things are good. You will find your way of dealing with it and it may be completely different from my path. I just hope maybe I helped ease your mind a bit. Take some time this weekend just for you to contemplate and not feel like there are a million things that you are obligated to do. Good luck with your insurance. I'm a little confused as to how they say it's pre-ex when you just got diagnosed, but I don't know any of the details. That sucks and I hope you get that cleared up. Did you not have insurance when you were diagnosed? If you had it, even with a different company and didn't let it lapse, all you have to do is prove you've been covered the whole time and that goes away.

So do what you can, don't do what you think will make you over tired and overworked. It's so liberating for me to say "I'm not doing three different things today, I'm doing one". I used to get dragged around to every family function and nephew soccer game, and all that crap. It wound up flaring me up and I will only do what does not aggravate my condition, which is pretty much one obligatory thing a day. That has been good for my soul also since my family is so damn busy just being busy they never slow down to take care of themselves and I've always wanted to slow that stuff down. Taking care of myself is paramount now so I can be there as much as I can when my family really needs me.

Take care and have a good weekend. I hope you can get some good rest and come to a little peace soon. I think I can tell by your tone that it's not been easy for you as of late.

Hey

Hope you feel a little stronger soon & that all goes well for you.

_________________
Al

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I was diagnosed this year after having a minor episode Nov 2006 for a 3 week period. I have had no other symptoms since, and all has been gone for over a year. I am on a clinical study for teriflunomide, placebo, or the real thing, who knows, but I am now 52 years old, and still going strong.

Dan

Loobie - Are you saying your ability to multitask has been affected by MS?

I supported and rasied five kids essentially alone and somehow the reserve energy was always there to do what was necessary. MS put me on a completely unforgiving energy budget. I can't push myself any more. It's impossible.

Lyon: It seems my diagnosis has been one of exclusion. I was found to have a low B12, taking supplements to see if that helps and if not that will be something to pursue. My anticardiolipin/IgM is elevated but the doc said other labs that would possibly point to another syndrome were normal so it's a solitary finding of uncertain significance. EMG, nerve conduction studies were very abnormal on both sides and MRI/MRA of brain and neck showed lesions. I was told neck lesions on the right are why my left hand dexterity is gone. My neurologist didn't feel a lumbar puncture is necessary and said the constellation of findings is consistent with MS. It would appear all other lookalike conditions have been ruled out.

My left hand is cramping up and I have to rest it some. I keep trying to exercise it to keep strength but it goes into a cramp.

My multi-tasking "on the fly" is now non existent. My coworkers call me Clipboard Boy because I have to write everything down or I don't remember it in enough necessary detail to do anything with the information. I used to have to run around the factory and glean information about how to best make decsions involving many variables like when tools and equipment would be ready, how much inventory is available of the other jobs that are being affected by adverse conditions, and stuff like that (not to mention all the people issues). Now I am the manager of an engineering dept. and I can really focus "in a straight line" and it has become much easier for me.

So to answer your question, I have become bad enough at multi-tasking to the point where I couldn't keep my current position at the time. The good thing was that I recognized it before my co workers did and the transition was done at my speed. So I wasn't forced out of the position which probably would have compromised my current position due to inadequate performance. If I would have got fired from that job, it would have devastated me, but it all worked out since I made the moves "pre-emptively". In other words, I didn't have to go out and get a new job dry and have to worry about taking on another pile of stress.

Loobie: I'll type as long as the hand holds out here. I woke up feeling pretty good and tempted to get backlogged tasks done while the energy is there. From the bit of reading of others' posts it is best to not do that.

I must get a clipboard too. I made pumpkin bread yesterday, something I'd done for 30 years with the same recipe. I could not remember which ingredients I had and had not added. The only answer is to check off each item as it's completed.

I understand what you mean about removing yourself from a job before the inevitability of screwing it up and getting fired. I had been a medical transcriber for 20+years and those are legal records. There are so many 'higher brain functions' involved with that job I appreciate now that I don't have them any more. At this point it would be unethical to allow myself to do that work until I got fired....it could hurt other people.

I have had a high pitched ringing in my head 24/7 for months. I have noise on always to distract me. Dummy me said to my neurologist "I can't hear silence" and I'm so happy she didn't make fun of me.

Wendigo

I’d like to welcome you to the site as well even though we all know it’s pretty sucky that any of us have to be here.

I’m one of the members who was diagnosed 4 years ago at the age of 57 and I can certainly identify with what must be some of the bewilderment you might be feeling.

The early days and months are definitely overwhelming and yes, I do wear medical identification in the event I fall out somewhere, and yes, I did “pack” confirmation of my diagnosis in my car for a couple of years in the event I was stopped for a traffic violation and couldn’t walk a straight line.

My primary symptom was difficulty walking—an ataxic drunk for about half a block before I thought I was going to fall out more or less captures it. At this point I no longer carry the diagnosis in my car as I can walk a pretty mean straight line and I’m still working, driving, etc. I’m lucky in that so far my hands have not been affected.

As for not knowing what kind of MS you have, it’s my understanding neuros frequently wait a year or two after you’ve been diagnosed to decide that. The first time I had difficulty walking was at the age of 53 (no diagnosis at that time other than the typical “stress”) so they put me in the “RRMS” category when I was finally diagnosed 4 years later—after I asked them to rule out MS.

Re: how often to call the neurologist. As Loobie indicated, over time you’ll become familiar with what’s your new normal and what’s a new symptom that might need attention. I think I’ve only called my neuro twice—once before I was diagnosed and once when I wanted to switch from Avonex to Copaxone (the side effects were just too much for me).

As to applying for Social Security Disability, if I were in your shoes I don’t think I’d hire an attorney at this particular point, but if you don’t think you’ll be able to work in the future you might want to consider actually applying now —reason why—if and when you are finally successful, they back date any payment(s) you’re eligible to receive to the date of your application.

Lastly, given my own personal interests, your age and if you haven’t already done so, I feel compelled to suggest that at some point you might want to consider hormone replacement therapy. The circumstances of my own diagnosis propelled me to read about hormones and MS and I think it’s just possible that normal hormone levels might help people better manage MS.

Here’s info from a survey, A pilot study of the effect upon multiple sclerosis of the menopause, hormone replacement therapy and the menstrual cycle .
The use of birth control has also been associated with delaying diagnosis, and, more recently, in a very small pilot trial, HRT was linked with improved neuronal health in post menopausal women with MS.

I posted links to a couple of articles about the risks of HRT in this thread on estriol. And of course, feel free to pm me if you have questions. My work at the moment is fairly intense so it may take a while but I'll eventually get back to you.

At any rate I'm sure hoping things begin to get better for you in the near future and do take care.

Sharon

Sharon, I believe there is a connection between menopause and MS. My neurologist suggested a clinical trial going on of I think it was estriol, possibly UCLA? I'm in So Cal. I'm definitely in the 'peri' stage but do clearly associate a type of fatigue I've never known when I began to become irregular for the first time in my life over a year ago. I attributed it to change in hormones. My mother just about went insane with menopause and I felt lucky to have only fatigue.

I like knowing the Betaseron has a long track record of relative safety and efficacy. Could I get the same potential benefit as the clinical trial just by taking hormone replacement therapy?

I should have a bone density scan because of my age just as a baseline. The bones must not be too bad. I have fallen five times since early August last year and should have broken something. That's what started the whole thing was a mechanical fall flat on my back off a stepladder. There was no pain or apparent injury to see a doctor about. Tripped over the vacuum landing on hard floor on my chest...tripped outside, all my weight on my knee on cement, tripped and fell flat on my back again...really don't know how many times I fell. Each time there was no pain and no injury to see a doctor about. Never been a clumsy person before so I began to wonder if the first fall had caused unseen damage somewhere causing me to fall or whether something else was going on causing the falls. I was afraid eventually something was going to break.

That must have been coincidental with my first 'attack.' I don't fall any more but also have become more slow and careful with all movement.

That's very interesting about disability payments going back to when you filed your claim retroactively. I hadn't heard that from the social worker who works at my neurologist's office. Thank you.

Hi Wendigo

You asked:
Unfortunately as far as I know that’s a total unknown and there’s no clinical trial info that I’m aware of to answer your question. The only clinical trial (I think) is the one with estriol at UCLA that you mentioned and that is with presumably younger women with RRMS and it’s also with Copaxone.

I think at this point one can only view HRT (which in my case is 8 mg of estriol and 500 mg of progesterone) as “complementary” to other MS treatments—there’s really no hard evidence that I know of that you could get the same potential benefit as the trial just by taking HRT. There may never be either since there seems to be a trend toward “combo” therapies.

In this pdf slide show by Patricia Coyle of the MS Comprehensive Care Center at SUNY at Stony Brook, NY (given at the 2007 CMSC Annual Meeting), the very last side clearly indicates that at least from her perspective MS is not a contraindication to HRT. That’s good news.

Hormonal Perspectives in MS: An Introduction

This is another link to a presentation by her. It’s fairly technical so you may not want to even look at it at this point but it does shed some light on the topic of MS and hormones.

Hormonal Therapy of MS

And, in this abstract from ACTRIMS 2007, they note that women who were on immune modulators and HRT had a more positive MRI than those who weren’t on HRT.

HRT Contributes to Neuronal Health in Postmenopausal Women with MS (The actual abstract is on pages 46-47 of the pdf)

Ultimately of course you’d want to ask your own neuro what he/she thinks about it. In my case, my neuro wouldn’t prescribe HRT but he was more than willing to work with my ob/gyn. And, if you think you might want to pursue HRT, you might want to have your hormone levels tested. That’s when I learned I had zero progesterone (among other things.)

Hope that helps a little bit. Sorry to say but it just seems like there is so much that is still unknown. Personally I continue to be quite optimistic about the possibility of hormones as a therapy for MS—largely from a neuroprotective point of view—but the data’s not there yet.

Now, unlike you, I was clumsy all my life but so far haven’t fallen and when I was finally diagnosed all my friends said, “Now we know why you’ve been such a klutz all your life.” Like you though, I am generally much more careful.

It definitely sounds like your falls could’ve been an indicator of your initial symptoms. You mentioned fatigue as well and that’s also a fairly common symptom of MS.

I think having a baseline bone scan is a good idea—I have them periodically—so far so good.

Do take care

Sharon

Dear Wendigo

I feel for you

I was diagnosed recently at age forty and my GP said he didn't think it would be MS as I was too old. OOpps was he wrong. I too inject myself every second night with Betaferon (same as Betaseron just different name in Australia). At first everything seems too much to deal with but it really does get easier, you learn to pace yourself. I was told a great way to think of your energy levels is making deposits and withdrawals from a bank account. Deposits are made by resting and not overexerting yourself so you can make withdrawals and not go into overdraft.

In Australia I have a photo id card issued by the MS society which states

"This card is issued to a person with multiple Sclerosis whose picture appears on this card. From time to time a person with MS may have difficulty with balance, co-ordination or slurring of speech. Signatures may also vary. Please accept the photograph of the person on this card as valid." This makes me feel a little safer if I do have a problem when I am out and about it also helps when I am flying and need to take my medication and needles on board as hand luggage.

I have been back to the neurologist once since diagnosos and I too am unsure of how often I am expected to contact him. My loal GP is pretty good though and if I am worried about stuff like vague symptoms I talk to him first. My GP said this is as much a learning curve for him as it is for me,, but at least we are learning together. The four day rule works well with different symptoms popping up. I find that I have to talk to myself and say is this a part of MS or is it just a normal bug that everyone else is getting as well. You do get a bit paranoid at first.

One of the side effects of Betaseron is depression so if you get too down it would be a good idea to talk to your Neurologist, just remember that you have only just started this treatment and things WILL GET BETTER believe me.

The good thing is you have kids to help support you, I am single and at times I feel like a burden to my parents who are in their 70's but we just have to admit to ourselves that at times we will need to ask for help and not be afraid of doing that.

I wish you all the best in your journey and hopefully you will find some hidden gems along the way.

Leis - It might be a draw what is harder to bear, being dependent on others or having to appear strong for those who are dependent on you for strength. Both suck. It must be difficult for you to see your parents approaching the time they would turn to you for help and you can't. My 85-year-old father has cancer and I know he was depending on me to be there for him when he can't take care of himself any more. It's too much to think of right now.

I told my 'boss' I would not be able to return to what I've done for a living for 20+ years. It's good to not have that pressure but from here on it's a financial freefall.

I've had a dull ache in what I think is the area of my liver since starting the Betaseron a couple of weeks ago. I read liver toxicity can be a side effect. The neurologist said if it's not gone in a week she'll order tests. I had gallstones diagnosed five years ago and wonder if maybe they're acting up again.

I think my 16-year-old daughter is scared of what she sees happening. She is trying not to be home as much as possible which is a big change. I must admit I'm not the mom she knew before the MS and I am unable to be there for her like before. She said she wants to take some movies of me while I can still walk so she can remember. My 15-year-old son only wanted to know if I'm going to die and tells me "God you're slow."

Hope seems just out of reach now. If things would just stay the same I could learn to accept them, but so far this disease is like I'm a puppet and a sadist is controlling the strings.