Now What do you do?

[supermum_ms]

Hi There,

I just got back from my appt with a psychologist to have my head examined, i now have a piece of paper to prove i'm not depressed and i dont have an anxiety disorder and even though she expected me to be stressed i still came out as 'normal' for stress too. So $140.00 later and i can now prove what i already know, its not in my head but its in my head :)

Its a small world, the psychologists very good friend just happens to have MS, she even said i remind her of her friend when she's having a relapse. I'll tell you something even though i was a little preeved that i've had to prove i wasnt imagining or manifesting my sx, it feels ok to get it validated by a recognised mental health specialist. So mentally i'm doing fine, but even she was conserned by my loss of nouns which are not something i can hide, she approved of all that i am doing to get back to being me and she even liked the verbal game i made up. Again it feels ok to get validation that i'm doing the right things but i'm still left in limboland, waiting for my dr to work it out, so what next?

The psychologist made a point of asking my Dr to keep investigating, even said i should call MS Australia and get their help, she said i needed a new GP and a neurologist who specialised in MS and i should not give up trying to find the answer. I'm tired and dont think i can summon the strength to keep looking when its nicer to forget until 'it' slaps me down again, do i want to know enough to face it, its a demon battle no matter the name.

The question is should i wait until my next episode or should i keep pushing for answers now? Will it really matter if i wait? I dont want to have to live the rest of my life (I'm only 45) without nouns if the next episode takes them away for good, which is an unknown out come for me. What would you do in my wobbly shoes?

Cheers..........JJ  

[supermum_ms]

Agh, i know the feeling, mine relates to the 'specialist' who didnt like one of my questions after he told me "he's not too bad, he may not need to be institutionalised" this said about a child (mine) who already knew his alphabet and numbers before he was 10 months old and taught himself to read before he was 2. This 'specialists' final words to me was "I know your type, you'll destroy this child if you dont accept he IS Autistic!" I would love to send this 'specialist' a dvd of my boy jumping meters high on his motorbike, winning trophys in archery comps, riding his skateboard, wakeboarding the list is endless, but i'd like to see him choke on those words everytime i think of all his academic awards, scholarship and grade skip etc. because he's exceptionally gifted and this twerp thought i was making up what this child was doing, now he needs his headspace defined (twerp!)

I have a tendency to ask questions of 'specialists' i dont always agree with them and thats when we clash, i dont have an ego the size of Texas but apparently thats a requirement in 'some' medical professions. I'll be looking for neuro number 2 next week, although i'm still trying to work out why neuro number 1 didnt follow MS protocol and why the radiologist (? technitain here) would ask me how long id had MS for if there was nothing there to see, too many unanswered questions, story of my life!

Cheers........JJ

[wadeheather]

"Adjusting and adapting the reality, flexibility, to never conform, to understand that re-wiring is possible but not always, time to wait and see isnt the right approach, hit it now and hit it hard, determination to keep up the hard work and the never ending belief that i can do it!"

Wow!  What a great statement.

Kudos.  Not sure whether to relate it to work or self.....

[supermum_ms]

Hi Ho,

I was in the middle of a post and it vanished whilst i was typing, now thats a little disconserting when your mind and body plays tricks on you all the time haha!

I'm a big believer in brain plasticity, always have been, i work(ed) with children with various physical and mental disabilities, from which i know a lot about the unique power of the brain. Personally I want to know everything about a childs condition so i can do my best for them, i often end up knowing more than many of the dr's that dx them, probably because i have a driving need to understand and help. knowledge is powerful but usless if you cant transform intellectual into practical, for this passion and knowledge i am greatful, its got me through more than this wonky battle with the un-named.

Use it or loose it, a simple way to see how important it is to challenge your mind, it falls down somewhat with lexical specific losses, damage to the brain (aquired brain injury, althzimers,stroke, lesions) are the causes of the aquasition of noun/verb losses in adults. I'm improving and if i can keep up the pace of challenge, the out come i want is possible. Adjusting and adapting the reality, flexibility, to never conform, to understand that re-wiring is possible but not always, time to wait and see isnt the right approach, hit it now and hit it hard, determination to keep up the hard work and the never ending belief that i can do it! I accept it could all be poppycock witchcraft hocuspocus gibberish but until i'm not getting the results then i'll consider giving in but i think i'll no longer be kicking before i'll do that, i dont stay down no matter how the journey is getting back up.

Time to dust my self off and get back into it!

Cheers........JJ

PS. Your all wonderful :)

[PastorDan]

One of the most satisfying experiences in my entire quest has been the meeting I had with the neuro-psychologist to discuss the findings of the half-day assessment administered by his underlings.  There is a terrific report, four or five pages long, that might as well be in Greek.  I wish they could put things as simply as he did in person.

If memory serves me correctly, he described me as a well-adjusted, high functioning, very intelligent middle aged man with a few very specific definable deficits that are clearly attributable to an ongoing disease process within the white matter of the brain, consistent with the report from my January MRI, which referenced only four nonspecific little white spots.  He just couldn't say whether this disease was MS or migraine or something entirely different, deferring to the neurologists to settle that question (I'm on neuro #4, at last count).  It felt great to hear him say that the only emotional component of this illness is the stress resulting from it, rather than anything contributing to it.

I'd like to see him run the same assessment on neuros #1 through #3.

[essdipity]

Congrats on being labeled sane! I'm joking but not joking too. Many members here have found it very helpful to have a full psychological work-up when doctors blame anxiety or stress or even conversion disorder for their symptoms. You're right, you do have that piece of paper to wave in the face of a lazy or incompetent physician. That should get that out of the way for good.

I urge you not to retreat from vigorous pursuit of a diagnosis. It's very understandable that you're sick of the whole exhausting and maddening process, but timing is important if you have MS. The sooner you start a DMD the more it is likely to be effective. You've gotten over a huge hurdle with this new evaluation, and now you want to protect yourself as much as you can from more problems.

Meanwhile, you don't have to just accept that you'll always have trouble with noun recall. There are therapies for this kind of problem, and the brain can 're-wire' itself. Think of all the people who have had strokes and subsequent speech issues like yours. A great many improve beyond the point of being noticeable at all.

Follow the psychologist's advice and get new medical help. A new GP (same as PCP) is in order, as is new specialist (consultant) help.

Sending best wishes,
ess

[Eyesnlegs]

Been there, done that, like so many others here. I was with the same GP 25 years and have a history of sx and relapses going back 20 years. I was blown away by them at every turn and have seen more consultants than I care to remember.

Often the problem with health care is that each bit of you is a specialist area and so that particular medic concentrates on that bit!

I changed my GP a year ago and took all of my sx list together with the story of how I was and how I am now. Thank goodness she listened and I was finally dx this year.

Go for it and if the next GP doen't listen - change again!

Pat
x

[supermum_ms]

Hi There,

Hmmm, I think i'll get my ducks in a row so the swimming isnt so tough, first on my list is getting a new general practisioner (GP), do you guys call them PCP's? I think i'd slap my usual GP to the moon and back if she tells me one more time its 'stress', not going to get away with that one anymore, i've got my piece of paper and i'm not afraid to use it.haha

I actually dont know what i'll do next, i dont want another episode the last one was too long, hard hard work and I was unrecognisable, not much i can do about that, I want a lot of thing but it's not going to happen just because i want.

Thanks for your thoughts, much appreciated!

Cheers........JJ

[HVAC]

I know you just want an answer.  My PCP sent me to the Neurologist  after a routine neurological  exam and then decided it was depression even though he said possible MS. I asked how can depression affect only the left side?

I had to wait six months between Neurologist appointments for two years before being diagnosed. Would I have liked to start on a DMD sooner? Yes. Would I have been diagnosed sooner. Perhaps if my first Neurologist had not been leaving town for a new job when he took my case and done an LP and the Neurologist he sent me to refused to do an LP. Heck I was not eager to have the LP until I had several MRIs pointing to MS.

We are in a transition period of MS since the MRI and the DMDs which are both fairly new. Before patients had to have progressed in the disease so it was evident without looking at the CNS. The DMDs and Steroids are not to be used lightly.

I am not sure I would be willing to give myself a shot every day if there was any doubt I had MS since the shot does nothing for my symptoms. Knowing beyond a shadow of a doubt makes the commitment easier.

I hope you get an answer sooner than later, take care,
Alex

[JulesL5S1]

Sometimes I feel that I am reading a story about myself!  I am also in limboland.

From the end of your post it sounds like you are recovering from your "relapse" and returning to your "baseline".  I've just completed that same journey.

I had a horrible, very scarey decline.  I blamed it first on my dx'ed hypothryoidism, then my dx'ed L5S1 disc saga, then on my weight gain, etc.  I started seeing doctors at the halfway through point.  Now I am just about back to "normal".  I am on Nuvigil for my fatigue and it is making a wonderful difference.

At my last neuro appt. (with a consulting neuro that my primary neuro wanted me to see) the doctor started to say it was all in my head and that I was hypochondriac.  I asked what the results of my SSEP were.  He hadn't seen those and went and got the report.  He totally changed his tune and was stunned at how "bad" the test was.  He couldn't say what was causing it though.

This is long - I wanted it to be about you but it seems like it is more about me.

I've decided now to "stop" the dx journey.  I have medication that is working on my symptoms and giving me back a good quality of life.  Most important, I NOW have a PCP and a primary Neuro that I like and trust.  They are now seeing me at my "normal" and are stunned.  When I started seeing them I was in the middle of the "relapse".   They didn't know what my normal was.  Now they are seeing my normal.  

If/When I have another relapse/decline they will be there to help me.  I am more educated as a patient.  For 3-6 months when I physically couldn't cross my legs without picking a leg up and putting it over the other one, I now know that is a symptom and needs to be seen by a doctor.  (I thought I was out of shape and had put on 1 pound too many!)  I also have learned to stay away from hot spas at the swimming complex.

I've had multiple MRIs that are clear.  I also had an MRA which was clear.  All the tests were clear except for the SSEPs which were stunning in their indication of problems - major problems.

I too am in my mid-40's.  I've been dealing with these symptoms since 1998.  I'm choosing myself to move to "watchful waiting".

If you choose to pursue a dx or chose "watchful waiting" make sure you have a PCP you like and trust.  See them at least every 3 months.  Good Luck, Jules

[Charley123]

Many of us can relate to what you are going through.  It's totally frustrating to be tested so much with so many docs telling us all kinds of things.  I was also told that I was making it all up and that made me really mad.  Let me share with you what my new neruologist said.  'When physicians don't know what is wrong with you, they will tell you that it is all in your head or that you have a virus that can't be traced.  I apologize for my profession'   I saw him a few years after the first one told me I had Conversion Disorder (It's all in your head)  Please find someone that will be responsive to you and understand what you are going through.  I did and I am now on copaxone. I have a mother and sister who have MS and I knew the symptoms.
I know very well how hard it is to keep going and so does everyone here.  Keep trying to find answers for yourself.  Hugs, Charley