Why can't I find consistent peer help

My biggest problem of late, has been seeking consistent peer help, i.e. others who have MS and know what I'm going through.  I have found several MS forums, but most lack consistent responses.  I don't know if this is typical or atypical of MS forum sites.

A lot has changed for me, since my fall, back in July last year, which lead to me learning I have MS.

I have started treatment for my MS, with Rebif, and took my first full dose (44 mcg) yesterday.

So many Q?, so few answers.

It would be nice to know, if my symptoms, are common or uncommon.

It would be nice to know, that someone else understands my pitfalls.

It's difficult to explain to anyone, who does not have MS, what you are going through, including your spouse.

I searched for MS forums, to find people I can talk to, on a regular basis (daily if need be), because that's
what I think, may help me, but alas, I have yet to find one (no offense intended).

Have the rest of you, found this to be a difficult hurdle too?

[essdipity]

I'm sorry you're having this problem, and at the same time a bit surprised.

Speaking for myself, I find that this forum answers all my MS needs except those that the medical establishment provides. We have outstanding and accurate information in our Health Pages. We have wonderful and supportive members who DO understand what we're going through. This is a place where many long-standing friendships have been forged, often extending outside the realm of MS. There have been many in-person meet-ups. We even have quite a bit of silly, lighthearted fun.

I joined this forum primarily because it was a place I could learn; I've stayed because of all the great support and camaraderie. I am glad to give back, to the extent that my knowledge allows.

You might try PMing a member or two whose posts you most relate to, and reach out in friendship. Remember that all of us have busy lives as well, so you might not get really quick responses, but keep at it. The community leaders here do our best, but the huge majority of support here comes from our knowledgeable and compassionate members.

ess

[Lulu54]

Good morning.  

May I suggest that sometimes things are not as they appear to be?   We put ourselves in a mental spot and that can be a tough place to get out of.   Dealing with an MS diagnosis can feel very lonely, and that is why there are so many forums available on line to support you.


I took a quick look at your previous posts and see that in your limited MedHelp postings, you have received replies from our members and Ess.



Shopping for an MS forum that fits your style is an excellent idea.  I have done the same, and actually have *memberships* in several but I always come back to this one here at MedHelp.  The responses on these other boards have never felt as complete as they do here.  I'm hoping that you are confusing the responses at the other places with how you have been received here.

If you get an answer and want to know more, then by all means elaborate on the question.  If you post something and want more responses than what you get, you have to let this community know that, too.

This is a wonderfully compassionate group of people, who have never hesitated to reach out and help others.  I hope you will continue to search for a place that works for you, and I am hopeful that this forum will be one of the top contenders.

So  please, I can't encourage you enough to start a new thread and post your questions, comments and concerns.  We really are here to walk this journey  with you.

BTW - weekends do get slow around here, so don't be discouraged  if you don't hear back immediately from someone.



wishing you well,
Lulu

[socrates2k1]

Thank you so very much for your quick responses to my post, I really appreciate it.

I apologize if my frustration came out too much.  7 months of life altering events tends to take it's toll on you.

My multiple symptoms, seem to be uncommon, and the results of having MS, at least for me (per information from my Neurologist) have had a very life altering affect.

He told me, that I would not be able to work again, that I would not be able to drive a vehicle again, that I was not to take a bath again (shower only, warm water, not hot and not cold), that I wasn't to leave the house in extreme weather (heat or cold).  So, I have not left my home, except for Neurologist appointment.

I don't understand my symptoms, I was told by the Company Nurse (sent by Rebif), that the medicine could not undo the damage done, but could help to slow the progress of MS, and slow down flare-ups.

I even get lost going into my own backyard, I carry my cellphone with me, so I can call my wife, when I don't know where to go, is this common?

I have the MS hug still, my tremors have become less often, my cognitive thinking is poor, my short term memory is poor, I still cannot remember what day it is or the date, my memory believes we are one year ahead (2011).  I'm never hungry (i.e. don't feel hunger), I'm never thirsty, I never have the urge to use the bathroom (I go every 4 or so hours, by doctors suggestion), I have word finding troubles (meaning I know what word I want to say, but I cannot get my mouth to spit-it-out, I just keep repeating the previous phrase or words, and get frustrated because of it).  The flu-like symptoms, to be expected with Rebif, are quite harsh.  I go from sleeping 15 hours to sleeping only 3-4 hours.

Is this typical?

[Rubyrocket]

I’m sooooooooooo sorry you are going through this. I wish I could be helpful in terms of answering questions but I can’t. I’m new and undx’d.  I can however, offer moral support. I can only relate in degrees, as my symptoms are very mild compared to yours, but my compassion for you is very sincere and you will be on my mind and in my prayers.

My experience here has been very, very positive. What has left the biggest impression on me, for where I’m at, is that in this forum, it really doesn’t matter whether there is a dx or not. Everyone has been right where I’m at and the members here offer so much support. I think you will find that there are others who have gone through what you are going through right now.

I’m often encouraged when I read the other posts here, and see the concern the people here have for each other; as well as catch a glimpse of some really awesome friendships that have developed undoubtedly, through some very difficult times. This forum has been such a blessing to me, and I hope it will be for you as well.

Warm regards,
RR

[essdipity]

Hi again.

It sounds to me as if you are overwhelmed by the enormity of changes in your life, and the trouble you're having identifying with the 'new you.' This is very understandable--you're having extreme issues.

It would probably help if you could break these issues into smaller segments, and address them individually. For instance, let's talk Rebif. What are you doing to minimize its effects? Are you taking any flu-pain reducers? Have you considered switching to Avonex so that your reactions would only be once a week? Do you have any sleep meds for the bad nights? Your Rebif nurse was right in saying that you won't get relief from old symptoms, but there is a good chance that your new ones, and relapses, will be fewer and less frequent. Please read a lot in our Health Pages.

I think your neuro is very big on black and white thinking, and that that has added to your depression. Certainly you shouldn't take hot baths or showers, but you CAN take warm ones. You shouldn't drive if your cognitive problems are bad, but that might not be all the time. You can leave your house when you feel well enough to, just don't overdo things. Pay attention to your body and what it's telling you. That doesn't mean stop living.

Your cognitive issues are severe. Have you seen a neuro-psychologist? That's a good way of assessing what's going on with you mentally. It's better to proceed in an environment of knowledge than to worry about each instance as it occurs. Possibly there are meds that can help you. We have at least one member who has been helped greatly by Aricept.

I would not say your symptoms are typical--they are extreme. That doesn''t mean, though, that there is no hope for you. Please stay in touch and let us know how you are doing.

ess

[The_Lorelei]

Socrates,

I'm also on Rebif and I find that the pain can be unbearable a few hours after the shot and into the next day.  I don't know if that's the problem that you are having, but if it is try taking some ibuprofin before your shot.  For me, it lessens that pain considerably.  I'd tried doing the shot without the ibuprofin as a test and I'm up all night with teeth clenched, with the ibuprofin, for me, sleep is possible.  Or consider discussing another medication with your dr, if the Rebif is causing too many side effects.

Cognitive issues are, unfortunately, common.  I don't drive anymore partially because not being able to work makes paying for insurance impossible but also because if I get overwhelmed I get disoriented and I'd rather not be disoriented while operating a gigantic metal machine of doom.  I forget words often (though never my swear words, odd that) and appts.  My typing is littered with typos, I have to check and recheck before I post anything because I'm OCD like that but still a word that doesn't make sense can creep in.
  
As for the hot/cold weather, a lot of people find that their MS symptoms are worse with heat.  I have a friend who's cousin puts a vest in the fridge and when his pain is bad he wears it.  It's uncomfortable for a bit but it apparantly lessens the pain.  For others, that's a bad idea.  When I get cold, I start to shake uncontrollably on the other hand excessive heat makes me lightheaded and faint.  It's hard to tell at what level of temperature your symptoms will be exacerbated.  I'd also ask the doctor why he'd prefer you not take baths.  He might be afraid that you'll fall asleep in the tub or be unable to get out of it.  It may be a simple fix that just having someone nearby will help.  Definately a topic to bring up if you're anything like me who can't live without a relaxing soak.

I also wanted to say welcome to the forum.  I've tried other forums before and felt unwanted or unwelcome.  People can be a tad robotic.  I have not ever had that feeling here.  The people here are very real and it's helped me so much knowing that I'm not alone.  I hope that you get that same comfort here that I do.

[Sailorsong]

Hello and welcome. I have been off of this board for a while due to vision problems so this is the first post of your I have seen.

I have a lot of the same problems as you have, but not as severe. But I do worry about getting to your point all of the time. I can only take showers myself because of the balance problems I have. Is that why your doctor told you only showers? I even took out the old bathtub in my bathroom and installed a walk in shower because of this. My balance also gets worse with heat and cold extremes. But dispite this I do still sometimes take a hot shower as that is the old thing that will warm me up sometimes. I just make sure I am extra careful when I do take a hot shower and cool it off before I am done to a warm shower.

I also get lost real easy like you do. I can't tell you how many times I have gotten lost in stores where I could not find my way to the exit. I just swallow my pride and ask someone when I get that way. I also go nowhere without my TomTom GPS. Without the GPS I could not drive anywhere. I get lost way too easily and it tells me where I need to turn and what direction. It also tells me when I am going to fast (all of the streets I travel have their speed limits in the GPS), and I also don't have to worry about reading strret signs letting me concentrate more on traffic. I just wish it could help me find the store exits. :)

I also have a lot of problems with short term and long term memory now. I use an iPod to help me with those problems. I put everything in it to remind me of things like Appts. and take out the trash as I never know what day of the week it is. My memory has gotten so bad that at times I can not even remember how to write (as in sign my own name). Maybe I should change my name to X? :)

I have been on disability for 22 years now. At first not being able to work ( at a job I really loved) was hard on me. I friend of mine helped me a lot in that area by encouraging me to do other things that I could still do and I even learned to compose music with the encouragement of my friend. As such music has become a very big part of my life because I express my feelings through it.

Dennis

[socrates2k1]

Once again, thank you so very much for all of your touching and informative responses, I truly appreciate each one of them.

As far as Rebif, yes, I take ibuprofen (1000 mg) about 1/2 hour before the injection.

As far as not taking a bath, it's because if too hot or too cold, I would be unable to get out and my wife would be unable to get me out either, very dangerous.

I have found it difficult to take any sleep aides (like Tylenol PM or Nitetime, generic Nyquil) because I get RLS (restless leg syndrome), but also what I term RAS
(restless arm syndrome), and believe it or not, the RAS is much worse.

It's true, heat increases my fatigue and makes me faint, while coldness increases
my tremors and cognitive difficulties, etc.

I can handle not working again, and I can handle not driving again, those put a
financial bind and movement bind on you, but can be dealt with.

What is most difficult for me, is one of my passions is writing poetry, I write
Christian based poems, etc., however since this happened, my cognitive
difficulties have taken from me, that precious God given gift, at least for now.

Yeah, I'm in financial limbo, right now, no income, no social security, no money,
I'm going to go to Social Services on Monday, to try to keep what I do have,
my home, my car, food on the table, etc.

Yes, this can be quite depressing, and yes I admit that one day a week or so
ago, I was thinking about death, but that's not me, I would never do anything
like that, but it surprised, shocked, and scared me to think this has gotten to
that point, but alas, I awoke from that and moved on.

I know the old saying, "Its always darkest before the dawn", so I guess I just
have to make it to "dawn", huh.

I thank you all, individually and as a whole, for giving me quickly what seems
so simple, honesty and hope, and I pray that I can return the favor, for someone
else here, when I'm ready, and they need a hand of encouragement.

More later

Thank you for your time, consideration, and cooperation, I truly appreciate it.

Socrates

[Quixotic1]

Hi, from me, too.  I wanted to say that the RAS is the same as RLS.  It should be renamed Restless Limb Syndrome and there are many meds that can help it.  I suspect the nighttime sleep aids you are using fail because they all are just antihistamines - which often cause an excitement in the nerves.  Many parents remember kids who went berserk on things like Benadryl instead of becoming drowsy.  You might need to ask your neuro for something like Klonopin for the RLS.  That is what I use and it works well/

As was mentioned above you might benefit from one of the emory enhancers they use for MS.  Aricept does help many people with the cognitive problems of MS.  You cognitive problems seem very severe.  I agree that a neuro-psychological eval might be very useful.

We are all - in one way or another - stuck in this MudSlide and feel how hard it is to get around.  This forum rarely leaves someone out in the cold.  I hope you can find a home here.

Quix

[supermum_ms]

I love the name!

I can relate to the cognitive issues though i do not have a dx, i've fought mobility, cognitive deficits, lost speach and I lost a truck load of IQ points along with other issues for almost a year now. I dont have the answers, all i can tell you is what i've done to change things for the better, that is if you really want to know, some are really wacky but hey, what ever works.

Setting little goals and big ones has helped me move forward and accept what is gone (for now, note i'm stuborn). I'm now a one thing at a time gal, multi tasking is what gets me in to trouble lol i'm not even good at walking and talking at the same time. About your poetry, have you tried a dictophone for when the ideas just come to you, not trying to multi task and create and write together, or if you've got a willing person, get them to scribe. Just a thought ;-)

I have a Q for you though, i dont have an appetite, never had one to loose though (from babyhood) have you been given any reason for why?

Cheers.......JJ

[socrates2k1]

No, many of my "MS symptoms", don't seem to be common place, and the lack of hunger or thirst, have never been officially associated with my MS, at least my Neurologist hasn't told me, flat out, that it is.

Is does come in handy though, when I had to have a colonoscopy and a tube down my throat (term escapes me) done one after the other, on the same day, I had to not eat or drink for two days, but drink awful Mirolax mixed with gatorade, it wasn't as difficult as it might have been.  I wasn't hungry nor was I thirsty, so I had to force myself to drink that awful mixture, but I made it through.
So believe it or not, not feeling hunger or thirst can be to your advantage.

I may not feel hunger, but I do crave food.  I will get on "a kick" and want to eat baked potatoes or a specific cereal, etc.  

I did tell my wife, if I wanted to go on a diet (which I should do), it would not be difficult for me, because I'm never hungry or thirsty.
Now, if I could only crave healthy foods and drink, ha ha.

As far as my poem writing, it's because of the cognitive thinking, and poor attention span, that causes the problem.  When I write, I usually stay on task until the poem is written (30 to 60 minutes), and I can keep the overall idea in my head of what I want to express.  Now, I cannot sustain that through even half a poem.  At least I was able to post many of my poems online, and to self publish my first book (though the only purchaser of the book has been me), before all of this began, back last year.  I have written a couple of poems about my experience since my accident, though.  I have also started 2-3 poems, that I have yet to finish.  I will get back to writing poems, it will just take time, I guess.

Note:  This is what I was looking for, people who understand and I can speak with, on a regular basis, thank you, each and every one of you, even those whom I have not had the pleasure of speaking with yet.  

Take care and God bless

Socrates

[socrates2k1]

Ever since this began for me, last year, I always "feel cold", even when it was hot during the Summer, I always had a blanket on me.  Now that it's Winter, I have a heated mattress pad and several blankets on my bed to keep me warm, but as I sit up and my upper body and arms are exposed, I get cold, and cold is bad, at least for me.

I have also come to understand that my taste-buds have been effected, I don't taste food very well anymore, extreme sweet, and extreme bitter, but salty and flavor, I really do not "taste" anymore, is this typical?

When I feel faint, I will sit down and take my blood pressure, and it will fall very low, sometimes to 70/40.  I have always had low blood pressure, typically 100/70 with a pulse of 65 (resting, of course).  I did notice a correspondence between my blood pressure falling low and my fainting.  Have any of you noticed this?

Q?  Does this happen to you?
Think of your body, as running on electricity (with a main power breaker), and someone shuts off your "main breaker", so you feel faint, your mind goes dark, and your body begins to fall to the ground, then just as you are about half way to the ground, they turn the "main breaker" back on again, so you can gracefully fall to the ground or get to a chair and sit down.  Has this happened to you?

Q?  Sleep patterns or lack there of
I have noticed that my sleep patterns are consistent for a period of time.
I will sleep 15-18 hours for a while, then I will go many days only sleeping
3-4 hours a night.  Does this happen to you?

The most frustrating things for me, are the "word sticks" (you are speaking about something, you know what word you want to say, but your mouth will not get it out, so you keep repeating the previous word or phrase) and forgetting what you were doing or what you were about to do.  (You look around, aimlessly, trying to remember, and if there is someone with you, they wonder what you are thinking or doing).

Do any of these things "ring a bell" with any of you?

[saveone]

You look around, aimlessly, trying to remember,

Hi we haven't met but let me say welcome.  i have the cognitive problems and some mobility problems.

What you said defiantly rings a bell.  I have had a neuropsych.  When I posted the results Quix said she was going to call me swiss cheese for brains...lol  I am going for another the 30th of March.

I would suggest that you copy and paste your post into a new post.  PPl who have previously responded to this post may not read it again.

A new post will draw everyones attention.  Beingi it is a weekend the board is usually slow.  If you don't get enough responses just type bump and bring it back to the top.

take care and live well,
terry
undx

[supermum_ms]

Do i relate "oh brother, yes"

We've had many a chat about brain f.a.r.t.s (forgetful articulated retreval and temporary, stutters lol), thats what i've started calling it, it does have a real name starting with dys but i've lost it. I have the sentence "whats the word that means xxx" interjected here and there through out my conversations, someone throws in a word and if its close or what i'm thinking i just keep talking, like nothing happened. Sometimes its like a game of crosswords, but its working at the moment, family are use to it now.

I would say your temperature cage is on the fritz, usually heat is the enemy, not good to bring up your temp, that alone brings on whats called pseudo (sp) exaserbations (sp) and makes everything flare up until your temp get back to its comfort zone. How to get around this one is hard to say, someone will have an idea but in the mean time try and find a temp you can live with, just in case this is causing a problem overall.

I think you'll find the dizzies are from vertigo, that is unless its when you get up form a chair, orthostatic something or other (the word i'm looking for might be hypertension), which indicates your bp is dropping when you get up. Bloods not pumping to your head quick enough, bp drops and your temperarily loosing focus until your body is lowered and then you reconnect to planet earth. Losts of tricks for either issue, just depends which it is.

Oh, it could also be connected to hypoglycemia, low blood sugars, see if you can work out exactly when it happens. I hit the deck if i havent eaten and lower my head to pick something up, i also see stars when i get up from a chair. There are things you can do to make it easier.

Lastly, my sleep pattern is wonky, in an episode i sleep 16 to 18 hour days, once i'm out of it i seem to need less, though it does catch up to me. I try and not think about it, i go to bed and rest, if i sleep then i sleep, if not its no big deal, at least i'm relaxing. It doesn't seem to hit me as hard doing it that way, again not enough rest can bring on a pseudo, as will too much stress, though that is hotly debatable acording to some research. When i'm tired, my words start really slipping, always time to rest, pushing myself doesn't work for this one, just makes it all worse!

Pitty about not having a sure answer about the appitite, my mum thinks i'd be rich if i could work out why i dont feel the need to eat, i only eat because i should not because my body is telling me to EAT THAT CHOCOLATE CAKE NOW! I actually think it could of easily gone to the other exstreme, cause i dont feel hungry, i aslo cant tell when i've eaten enough, sometimes i can only get down a childs serve and others i'll woff down an entire giant bag of chips, all feels the same.

Cheers.........JJ