NNEUROLOGIST FALSE HOPE/INSPIRATIOP

[coco31]

Hi Guys: Yes I have been here before but hand a tendency to visit more frequently when I feel unwell and need advice.

And I have been unwell which really ***** because I go through phases of feeling great and phases of feeling horrible! On average every 2 years..... Something hits me. Or gifts me - which ever - its all the same!

I just want to say that I have had a relapse over past 1-2weeks. My legs feel like jelly, MY attempt at 1 foot in front of the other only demeans me and finger to finger is a joke!!!!! I am weak and I shake just standing..  BUT: don't ya just love the optimistic neurologists: who say "I this is a "relapse but I am hopeful you will make FULL Recovery?

You and your family or partner come out of thIer filled with inspiration and hope. FALSE inspiration and hope!!!!1

[Millsinc]

Coco I feel your pain and I'm so sorry that you're having to go through this. I too strongly believe that doctors should just tell us the truth. Don't think that not telling me the truth is going to save me or make he happy, the truth is what would make me happy and help me to live/adapt to my situation. As Guitarr_grrrl said MS is VERY UNPREDICTABLE! and at time a painful daily struggle.

Take some time and try to find ways to deal with and get you through the day, to make life a bit more bearable.

I do hope that you come up and out and get some real answers.

~Hugs & Kisses~

Feel better soon :-)

[Guitar_grrrl]

Ahh, Coco - sorry you're flaring, right now.  The thing is, MS is full of uncertainty.  We know it, and the doctors know it, too.  I think the MDs paint a rosy picture around it all to keep their patients' spirits up.  In many instances, our flares can and do resolve completely.  In some, the flares don't completely resolve, and we're left with residual weakness, numbness (insert symptom here...)

It's really difficult to live with uncertainty.  It leaves us in an uneasy place, and we're not sure if tomorrow morning we wake up and a leg gives way, or the bladder refuses to hold any amount of urine, etc.  Or, we wake up feeling fabulous, and by 2 in the afternoon, nothing works.  Or, we take forever recovering from a flare, or don't recover from it at all.  No, the MDs don't know, anymore than we do.

My way of dealing with this?
1. I keep my mind open to all possibilities, and stay mindful of the present.  One Day at a Time.  And if that doesn't work, One Minute at a Time (or 5, or 20).  
2. Be flexible, and always have a "plan B" in place.

These two ways of dealing keep me engaged in this business of living well with this cr@ppy disease.

I still ride my bike, because it's easier than walking (uses fewer muscles), keeps my balance together, and does wonders for my mood.  Yes, my left leg goes numb about 10 minutes into it, but that's just sensory stuff, and Uthoff's phenomenon at work.  I can still do it.  The "plan B"?  I carry my phone with me, and my bike rack lives on my car.

I still work.  I take frequent breaks, and I don't work more than 3 days/week.  "Plan B"?  Well, if I can't work anymore, I apply for Disability.  

I have acquaintances with pretty seriously advanced MS (can't stand, take a step, lift an arm) who just stay in the present, and remain engaged, and at peace.  It is what it is.

Tysabri has no guarantee, either.

[supermum_ms]

Hmmm honesty is what i always expect but not always get lol the pat on the head types, make my blood boil now ha i've often wondered if next time i encounter this, i'll actually say whats going on in my head, "oh get over your self and give it to me straight!" You do realise that its got nothing to do with you and all to do with them feeling better about the news lol

One of the reasons i like my husbands doc, who's now mine too, is that he tells it like it is, then gives you a hug and a kiss on the cheek if it isn't good, well he does me lol. He'll even tell me if he doesn't know the answer, he jokes with me and gangs up on me when needed, I like all that about him too, it makes me trust him, which isn't a bad thing to feel about your doctor.

Its taken me years to walk away from my old doc so its a bit cheeky to give advice, though i will say its always better to tell them how you'd want them to be with you, and if they still can't do that, then you have the option of finding someone who will.

Hugs to you.........JJ

[SarahL2491]

you did not say what type of MS you have.
tysabri is usually for RRMS and those who have not benefited from being on other drugs......its not usually given "first" although "tongue in cheek", I was, probably due to age and how long I have been diagnosed.  Doc felt he was "racing the clock".

I too prefer the unsugared version but always go and do research so that I understand and can ask intelligent questions.

Good luck and keep us posted.

[coco31]

Thank you - I appreciate and agree with your sentiments! I try and get the rationale - but I want it honest. Straight up this is the impression I get:

This is your disease - you have MS you are deteriorating, there is very little "current on the market" (unless you are insignificantly unwell and meet NICE criteria otherwise), here are steroids, see you in a month!!!!!  

I was diagnosed with MS 3 years ago (I am 31) - my aunt was diagnosed in 1996 (who has secondary progressive MS now at just 38 yrs old) why am I being offered "REBIF" they very same she was offered almost 20 years ago - the same thing/preventative developed 20 years ago?

I'd have to be nearly dying to get Tysabri according to NICE treaty guidelines for prescribing same. . . . a joke indeed!.

I'm Disillusioned: (big-time!!!!!!!!!!!!!!!!!) that:              :
1) my only option is to continue rebiff (sacrificing 3 days of my week sick, and I am sick of being sick from rebif... or
2) noting because I don't meet treaty guidelines for anything else!

DISILLUSIONED? FED-UP!!!!!!!!!!!
Coco 31

[doublevision1]

Sorry to hear you are going through a relapse, they really do $uck!  

I get where you're coming from.  My ophtha was the same way.  He cheerily told me my severe double vision would improve in a month.  When it didn`t, he changed it to 3 months, then 6, and so on.  I realized he had no idea (not his fault, no way for anyone to know) and was just saying what he probably thought I wanted to hear. It wasn't.  

At the same time, my neuro was telling me, honestly, it might get better, it might take a year, maybe longer, maybe never.  I appreciated the honesty even if I didn't like the implications.  I faced that worst case scenario and was becoming resolved and accepting of it.  Eventually it did improve to 90-95% normal, for which I am extremely pleased, but I think it was nonetheless important to accept it might not be so.  

I think it's not helpful for docs to keep patients suspended and stuck in false hope when they truly cannot predict outcomes.  Instead I think they take the path of least resistance for themselves in this respect.  Many are pretty uncomfortable dealing with patients' emotions and I think this may be part of the reason they just don't tell what they know to be the truth, which is that the course that any patient's MS will take is unknown.

[coco31]

Sorry guys not sure what happened there: All I was trying to say is Neurology Consultant's optimism is not good physically or mentally even though I feel they are "doing you the favor":

I want it blunt: i.e    This is what is new.                          
                             Why do I have symptoms
                             This is the plan to alleviate/long-term
                             And what can I expect.... for now?

Sick of sugar coated vague answers! Just deliver message; you are educated to a certain caliber with my disease :i.e. provide helpful information. END OF!!!!!!!!!!!!