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No Question: updating VENT

Hi there one and all,

I had a follow up appt today with the neurologist, It was very shocking and i'm about to pull a lot of fun from a very very upsetting time, one i will not now or ever bother repeating, fun i will make because this usually happy little lady is crying buckets and i'm not putting myself through it ever again, i'm doing it on my own, just like i always have.

I arrived at my appt proudly walking as close to normal only about every 3rd step my knees being rubbery and not locking, i was really pleased with my self, id come a long way and it felt really good to be walking so well. I had no expectations of a dx but i was gob smacked with what he had to say, i hadn't even got my bum on the chair when he said "you dont have MS, nothing lit up, your fine!". Shocked, I handed him my symptom tracker and my time line, which he looked at for all of 5 seconds, humphed and promptly ignored it, saying "well you dont have MS". STUPID ME blurted out of my goldfish gulping mouth, i dont understand are you saying nothing showed up on the MRI's? He looked at me oddly and brought up my brain MRI, he's skipping through them and i'm seeing dull white spotty areas but he's not pointing them out, he stops at a brighter one near the centre and says "you only have a few irrelevant bleeds" and there is a bit of decimation of the white matter in your frontal lobes but you havent had any signigicant brain shrinkage, oh you do have a couple of areas here and here but they are nothing, this is a good brain, you havent had a stroke and you dont have MS!"

I'm still doing my goldfish impersonations, trying to get my wee little 'good brain' to catch up with what he was saying and before i could ask what all the other white bits were he was ending the appt. and getting up off his chair. I blurted before he'd made his escape, I cant believe nothing was even found on my spine MRI with the way i'm walking! (remember i'm still shocked and a little dumfounded he was leaving in about 3 minutes of my appt and id waited 7 weeks for this), with a sigh worthy of an oscar he went back to his computer and brought up my spine and said "you do have a large area of decimation just here (pointing to what looked like a 3 cm squashed white bit) but its not in the spinal fluid so its nothing." "You havent had a stroke, i'm 98% sure you dont have MS but i want to help you so i think you should see a pschyatrist.

He was none too pleased that i didn't lean over to get my head patted and my tummy rubbed, steam must of been coming out of my ears, sweat little puppy dog had some bite and he didn't take well to me not being happy and hormonally snappy. I asked him to explain why which put him on the defensive (i know wrong wrong wrong but i had pmt theres no controlling it when i'm facing an idiot), i wanted him to explain how specific cognitive deficits could be attributed to a psychiatric condition, just to let you know its not possible to select them like your picking apples. He was unable to explain what else could cause my totallity of symptoms, he was quite comfortable thinking i could create all this with my 'good' but phychologically ill brain. Funny this is the first time i've actually come out about it, and i only did that because i was imobile and i couldnt hide it any more, which i now regret bothering to do. He couldnt explain what psyciatric conditions caused a person to be unable to walk with out spasms and spasticity and he was not pleased that i was asking the questions, sorry thats what i normally do. I wanted to say its not you,(smile sweatly) its me,(smile sweatly) dont take it personally i'm different, i dont think your god,(smile sweatly) your in a hurry and you've already made up your mind that i'm a hysterical person with emotional issues about their health,(smile sweatly) you've got your work cut out to ever convince me that a psychiatric illness can cause my symptoms because i already know they cant, so if you'd like me to recommend a psychiatrist to help you work your self out id be happy to help you (smile sweatly).

Now dont misunderstand me, i was trying to be nice but so far this 'profesional' had made mistakes in a very short time. (1) mentioned nothing lighting up when i had no contrast, (2) no change since my other MRI and i've never had any others, (3) ignored quite a few 'white' bits (4) said i have been seeing other people when he's the only person i have ever seen (5) mentioned the gp (that likes to say its stress every time her blood tests are fine) by her first name only, which makes me think not happy thoughts (6) type cast me (7) assumed i was an ignoramous (8) assumed i wasnt happy because he wouldn't give me the dx i wanted, twit twit who wants MS (9) he acknowledged there were neurological symptoms but decided to ignore it and go with psyciatric illness (10) wanted me to have an EEG and LP to get me to leave.(11) in exasperation stated i specialise in epilepsy and i know you dont have that, like i was shopping for a dx or a new sweater.

So people i am done, not doing this anymore, the next time i cant walk after ive had the flu and the words are lost or stuttering, i'm taking my self off to the local psychiatrist to get myself admitted, no i'll just wait until i'm dead (joke!!!) to get them to find the evidence on the autopsey, i've been dealing with this for a long time and the only time i actually tell someone and bugger it to heck and back but no one believes me (not you guys) i'm talking the people who are suppose to help.  I didnt want this, i didn't even want anyone to know. I'm tired of my family situation being used as an excuse for everything that happens to me, my sons psychologist would be suprised that i've suddenly acquired a psychiatric illness, i think she'd have a laugh because its just rediculas that the psychologists and psychiatrists i know through my kids think im fine and the medical drs think i'm not.

Cheers and good luck to everyone, thanks and many huggs!!!!!!!!!!!!!!!!!

JJ    
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667078_tn?1316004535
JJ,
  Be done for now. But after a rest find another Dr.

I was sent to a Neurologist to continue diagnosing MS when the Neurologist I saw once took another job. Right away she decided it was not MS. She fired me after I questioned her. When I had more trouble my PCP sent me to the MS Specialist. I hated Neurologists and thought this guy would treat me like the first two. I handed him the other Neurologists' notes and test results. I had no time line and said nothing. He read the notes said are these all the Doctors' notes? I said yes. He said who are these people and muttered unethical treatment. He went on to test me for MS. I did not get diagnosed right away.



  I once had a kidney stone to large to pass it took a dozen Doctors and 4 months of visits to  the world renowned Duke Medical Center to do something about it. I worked for a Veterinarian he told me the first day it was a kidney stone. I almost lost the kidney. I kept going back and back until they did surgery.


Doctors are not God they are making educated guesses. Some are more experienced than others. Do not punish yourself to get back at a Doctor.

May be take him up on the Psychiatrist. When they sent me to one he looked at the MRI report and said you have a real neurological problem I don't know what it is but I am there for you. He has been a great support through the diagnosis which took two years and now accepting another chronic disease.

Alex
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Avatar_f_tn
JJ  -  I am new to this form.  I don't have a dx yet.  I am going to the Cleveland Clinic on Monday.  I haven't been at this very long only about a year and a half.  I feel so bad for you.  No one deserves to be treated that way.  Docs are supposed to be professional and compassionate.  He sounds like his bedisde manner is nonexistent.  It is obvious that he has never suffered anything in his life.  I have been treated by some docs that way in the past.  I have suffered from depression for  a long time and there have been times that I have been dismissed and they have said that it is "psychsomatic".  Ugh!  I hate that word!  Those dummies don't know what they are talking about.  Who would ever think that we would wish these symptoms into existence or want to have MS???  That makes me so angry I could just spit nails.  Please don't give up on your search for answers just because your doc is a complete jerk!  Why don't you ask for some referrals to some MS specialists from people on this form?  I would guess that in all of their experiences they could give you some good ideas.  I know that the Cleveland Clinic says on their website says that their Mellen Center is the largest center of it's kind in the world for the treatment and research of MS.  I got an appointment in one day there.  The website there is:
                           www.ccf.org  
I will keep you in my thoughts and prayers.  Please pm me and let me know how you are doing or post on the forum.   Be blessed   -    Kayleen
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983008_tn?1329929430
sounds like he'd made his mind up before you even walked through the door, I think Alex has a point with the psychiatrist, apart from personal support maybe a report from them saying your problems are neurological not psychiatric will hopefully help with your next 'specialist'

take care  Val x
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293157_tn?1285877039
Hi it sounds like one of my many appt when I started out getting a Dx, I've seen a few Neuro and the first couple said it must be physcomatic? because I had many symptoms and they couldn't figure it out.  

they told me to see a pscyatrist? too, which I did happily, as I wanted answers and knew it wasn't psycosomatic?  sorry for the spelling?

it was confirmed that it was not mentally but organic.. neurological reasons....

no other Dr has mentioned it since and it was three? years ago.  Funny how once I went to one, no one has asked me too since, and I only told the one Neuro that I went and she said it's not in my head.

I got frustrated over the past four years looking for answers as many know on this forum.  I took time off and told myself to not think about it and maybe it will go away??  HAH...didn't work.

I went for many tests, LP, VEP, blood test.. MRI.  etc.. only the MRI showed something...and blood test ruled out things.  

I just got DX last month with MS.  it takes alot of time and sometimes different DR... I saw quite a few and didn't appreciate a few of them by the way they treated me.  I wish they would understand how we wait in pain, symptoms, wait and wait for their appt...just to be treated that way and brushed off is inhumane.... I don't know why they do that.

sorry, you had to go through that, so take some time if you want and see how you feel, if you want, go to a psyciatrist and get a letter stating it's not mental... alot of us that are in Limboland have done this.

keep track of your symptoms if they get worse.. try not to think about this appt... its one of the many we go through.  

It might be they do this to see if we still have symptoms after they treat us this way?  Maybe its a test???  I doubt it...but?

take care we are here for you... your not alone with this and we have been there..

wobbly
dx (finally)


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JJ,

   Well you have every right to be ticked off and crying buckets! I think you would be surprised to hear how many of us have been there. Not just the planning on receiving a dx at an appointment but having doctor schmuck tell us that we would be better off seeing a shrink.

I actually went to see a psychiatrist after more than one doctor advised it. I had a huge chip on my shoulder and thought, fine I'll go just so that I can say been there done that! The nice lady told me that I was fine but if I wanted to come back to vent she would be there for me. No way was I spending big bucks to vent to a shrink about the uncaring doctors I had put up with.

After "giving up" and a long time I was dx with RRMS when the MRI's and LP were done in the midst of a flair. Now I do see a "shrink", a neuro-psychologist to help with my severe cognitive decline and she is fantastic.

Don't let the bastards win. Wipe yourself off and keep on going. We are here for you.

Hugs,
Erin :)
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Hi,

I didnt sleep well, all the stuff going through my head, like how can he dismiss the muscles in my legs spasming enough to be visible under my clothes, one leg went into spasms running up my shin whilst the thigh was relaxed during the exam, he saw it, i didnt imagine it was happening it was real. How can he dismiss my purple feet, they are purple not normal colour at all and people see them and tell me they are purple because i dont know because they are numb so often i cant feel it happening anymore. Ok fatigue can be related to depression so i've leave that alone but the intention tremor that comes and goes never knowing when i'm going to over reach isnt. The sensory issues (i dont talk about) could be 'imagined' so lets skip them too, but what about the one thing that makes this less likely to be psychological. I do not EVER have these episodes unless i have been dealing with a viral infection requiring antibiotics first.

I could give quite an extensive list of why it cant be psychological, of one limb things that you just cant fake or imagine, they are visible signs of neurological causation, for it to be psychological there needs to be consistency of rythm in the tremor being 'inacted,' full limbs not partial and especially not when other muscle groups need to be utalised and they are not. Really its not in any of my psychology books, i do know what constitutes psychological vs neurological, this is what i do, psychology and brain plasticisty have been my world, if i had the finances i would have my degree, so it really really peeves me that things that only can be explain by neurology is being ignored. I wouldnt be concerned if i was displaying psychological issues i would see someone, everyone in my family is, why would i not, plain and simple its just rediculas.

Last night i thought it would be a good idea to get an assessment by my son's psychologist, I trust her and she knows i'm not living with a psychological illness, she'd of recommended i see someone by now but why should i have to prove i'm ok, its not right that when psychological gets tossed into the ring you have no choice but to rule it out before you can get help. What peeves me more is i'm the type of shlup who will go and see someone because i want to prove its wrong, it will go around and around in my mind until i do. If i ever get the courage to ask for help again, the very fact that i havent ruled out psychological will mean more proof that i am trying to get the dx i want, dr shopping, its a no win situation.

I'm sick of the very idea that someone thinks i would make this up for attention, when i have not ever asked for help before, i dont go to the dr often, i'm not that type of person never have been, i have to be coughing up so much discoloured phlem (sorry yucky) before i bother to get antibiotics. See i even feel like im doing it now, trying to get you to believe that i didnt make this stuff up, i dont want it to be MS so i would be exstatic if i was sure it could be ruled out now but after this, i dont know that it has been.

Thanks for all your loving and unselfish support, i'm going to go back to ignoring this again, i am laughing through this just like i always do. My hubby has asked me to go see a psychologist so that i have a clean mental health bill, so when it happens again like it has every year then i can go to his dr or who ever and they wont be able to not find the cause. He's annoyed because he knows me and he has never known me to not brush everything off as i'm fine just a bit tired, finding me on the floor after i've calapsed again not saying anything cause i dont want the fuss or seeing me in my sleep groaning and then my legs jerk and i'm wide awake, clutching my knees and holding back the scream until the pain goes saying i'm fine or seeing me walking like vergil from thunderbirds because my legs are in a spastic fase or seeing me take the cup in my left hand and shaking but i dont notice, he doesnt want me to give up, to him its not psychological its physical if nothing else and he's worried and has been for 6 years, he doesnt want me to give up and say i'm fine anymore when he knows i am not.

So the jokes are flowing think and fast, its how i deal with it, i'm not going to stop laughing at life, i'm simply a happy person even when life has kicked me good and propper, theres always something to laugh at. Groan hubby just said he thinks the neurologist might of been talking about our daughters MRI, we have the same enitials same address, when he mentioned the other MRI, it is possible thats where he got the impression id had one before, as i said groan, too many unanswered question.

Thanks again for being there.

JJ
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333672_tn?1273796389
That sounds perfectly awful. I'm sorry you had to go through that. It seems like people are giving you good advice: take a break and then try another neuro (they're not all so dismal). Maybe see if you can find out which ones are good through the grapevine. It probably wouldn't hurt to see a psychologist and get a letter or something saying it's not psychosomatic.

You shouldn't have to suffer like this without someone at least trying to help. Even if they really (misguidedly) think it's psychosomatic, they ought to be trying to help with that.

sho
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