letter to the moran

[olly]

geo

i have to hand it to you, once again you hit the nail on the head. this was exactly the way the neuro last week acted towards me. and i dont care what he says about my letter and have decided to post it, hope you like it,i have deleted names.

dear dr?
Please note i have made copies of this letter if you intend to disregard it,and will send it to the appropriate officals.

After my appointment with you on the 20th march 2008 i contacted many people with hsp/pls including ?who is a spokes person for the spastic paraplegia foundation,she has pls and is very educated on this desease and gives talks to doctors/neurologists in america.
All these people state hsp/pls does not show up on a mri scan.
they all have had serial mri's that have been normal but are diagnosed.
I have enclosed their email's including one from a neurologist.
Mri scan is used to diagnose m.s,tumours,strokes and other deseases
that show atrophy. only occasionaly does motor cortex atrophy show
in pls.Mr spectroscopy or transcranial magnetic stimulation can be used
to evaluate umn disfunction in some.Hsp /pls a clinical diagnosis on symptoms when mri's are normal and all other suspected causes have been ruled out.
I know all these hsp/pls patients are eager to hear your reply,all so their neurologists some of which are at various mayo/mda clinics across america.
So please think very carefully before you reply,if you have any intentions to do so.

I am confused regarding conflicating information given about my medical condition.One point i have noted is the suspected loss of muscle tone in my
left lower leg.I asked both yourself and dr ? about this and you both dismissed it without checking.You said the neurologist who found this
was young and inexperienced yet dr? was praising this neurologist as being very good,my son was there when this was said.A nurse also witnessed the abnormal reaction .I have been told this can be caused by a acute umn lesion.Also dr ? noted weakness of the left lower leg early on in my illness and noted it in a letter to my doctor.Is this a coincidance?

I have never had a definate clue as to what was wrong with me till now. dr ? did mention hsp/ pls in november 07, which my son witnessed.
In january 08 after looking into these conditions and realising there may be a connection i contacted various people for advice who all have hsp/pls.
I described my symptoms of starting with sudden muscle spasms in my legs and weakness, stiffness,cramps,muscle twitching,balance problems.They all stated these are umn symptoms the same as they have, and there reflexes are brisk as i know mine have been.In some cases i have been told my symptoms/condition has progressed the same.
I also described what i now know to be clonus/myoclonus, dr ? told me it was not epilepsy which i knew it was not but would not give me a satisfactory answer.

I have been through tremendous pain and suffering over the past 8 years and have only wanted to know what was wrong. Is this too much to ask?. Am i not entitled to adequate answers and medical care?. It appears not.
I have had only a few neurologist appointments over the past 8 years and hardly see my doctor as i know theres not much he can do, i have tried not to complain too much and deal with this myself so i am not a malingerer.

I will stop taking the baclofen as you stated even though dr ? said to keep taking them. The baclofen have been my only help in controlling the muscle spasms.We shall see if there is a deterioration and i will have it noted by an independant doctor or a&e department and will ask for a signed copy for future referance if they will be needed for any legal action.

I did not appreciate the abrupt,could not care less attitude you showed me or the sarcastic comment you made regarding the difficulty i sometimes have with my jaw and chewing, this caused me deep upset and distress, i am considering reporting this to the appropriate officials.
I am not a lier,stupid or have mental health problems and any suggestions in my records or corospondance as to this will be viewed as defamation of character and will result in legal action.
I have sent a copy of this letter to dr ? and i can only deeply appologise if i have offended him by my miss-judgement in thinking you could help.

yours sincerely

 

[olly]

i would just like to add with this letter that over here in the uk at least at my local hospitals they regard the mri as a gods eye view to the brain and is infaliable, no man made machine can do this, even my usual neuro says not everything shows up and to determine exactly what was wrong with me he would have to look at it with a microscope,we shall save that one for postmortom.
my usual neuro is a older gentleman, egyption actually. as a person he is a very nice man but he never directly answers my questions or tells me whats going on and i find that infuriating, he will/can't give me a definate diagnosed even though all else has been ruled out and a mnd is all thats left. my progression has been slow but no diagnosed makes me wonder if they wont definatly diagnosed pls as some even decades later have gone on to a als diagnosed.
the neuro i saw last week who i sent the letter to i still feel the same about and i hope the letter gives him a wakeup call,or i hope it infuriates him and he gets his just deserts.
by the way i'm not a lier or stupid/ mental but over here the difficult patients are pigeon holed with the mad.you can only get access to your medical records if you send a written request through your doctor and pay a fee, but my doctor informed me when i asked about this a few yrs ago that they can leave out things they don,t want you to know. i should get a response from either or both neuro's in the next day or so and will let you know what they said. i am hoping i will finally get some answers and more adequate medical care or they may strike me off and send the men with the white coats lol. all the best

 

[Geo]

Olly You have to wander about someone who doesnt share information . This has to mean they do not know and their errogance wont let them open their mouth or they may say something stupid . If they BS their way through life they can make people beleive their a Doctor . As soon as they open their mouth the evidence comes out . I Have always request my records because they do not share with other doctors so now all the info is lost .We Have Hippa Here and i was told we cannot share your info so now you can sign a release . Well i take all my info when i go to a new doc. I had one Doc. who refused to give me my records
He soon found out he could be shut down ,as the guy at the Dept. Of Registration told me , needless to say i got my records . They Get Errogant and think they are above all laws . Know Your Rights Geo

 

[hopingforcure]

Hi guys,
I went to the family doctor the other day for a urinary infection(just what I needed), like we do not have enough going on.. Well I went out into the hall to place a form that I they had me fill out into my file. The medical assistant in the hall, stopped me and said, you cannot look at that file, HELLO it was mine, and mind you I was placing a form on top of it. Well that just angered me, how dare she tell me that I could not touch my medical file. I said wow, that is wrong, how would the doctor like it, if he could not see his file? Well she was about 18 and had no idea what it feels like to be sick..so she looked at me like I had 3 heads. I felt bitter the entire afternoon, how dare I not be able to look at my file, hello I PAY the doctor, he is not treating me out of the goodness of his heart..I am sorry, just another injustice against the ill..

 

[LindaB]

Hi, Just thinking that I will add my two cents to this thread. I was DX with ALS two weeks ago. I am sitting here with a fractured back due to a fall. Although the fracture could be easily fixed, the orthopaedic surgeon told me that I was "non treatable" due to my "condition". At that time, (last month) he thought I had Myasthenia. The doctor told me that he didn't want to mess with someone who obviously had a progressive disease, and was wheelchair bound.I wonder how he would have felt if someone said this to his mother and had sent her home to suffer. The funny thing is that I contracted ALS only days after his botched back surgery on me. It is almost impossible to put into words how tragic man's inhumanity can actually be. but hopefully people like this are in the deep minority. Linda

 

[hopingforcure]

Linda,
Oh my goodness, I cannot believe what you have been through. So many of us seem to target are symptoms to a trauma or surgery or such. I cannot believe that this heartless doctor, Oh I cannot even put it into words, with what Caroline endured, and now what you have been through, my goodness, WHY?
I am so sorry the road you have been on, I only hope that we can at least provide some kindness, companionship, and friendship on the forum for you. Hoping

 

[olly]

lindab

i am dumb struck by your post. i cannot imagine what you are going through and what the doctor said,unfortunatly these things are not rare i could tell you of many many incompitant cases.people/doctors do not care anymore. i am fairly young at 40yrs but i can remember a time when there was a more caring spirit in the world but sadly that is slowly declining. are you new as i have not seen your name before,if you are welcome and you will find all the emotional care you need here.god bless
caroline

 

[olly]

bad day

:sad:i have been off my baclofen for 10days.over the weekend the palms of my hands and souls of my feet were sweating profusly,i suspect withdrawl symptoms.the stiffness and spasms had not changed,however i woke up this morning feeling like i've been run over by a truck.my body especially from my mid section into my legs are in exstreme pain and rigid and my walking has deteriorated over night,but i shall persivere.
please note this is a stuborn test to prove the moron neuro wrong. i have been on baclofen for over 7yrs and NO ONE should try this or comeoff meds without consulting your doctor as the withdrawl side effects can be dangerous.
i can deal with pain or anything else, but arrogance from a defective quack i cannot deal with.
bestwishes
caroline

 

[Geo]

When we encounter rude Behavior ,the first time you are taken back and dont respond ,but as time goes on we get that calous build up and wont worry about taking on any Errogant SOB Doc. or incompetant people he or she has working for him or her . I Embarrassed one of them the other day ,i had to get some blood drawn and asked the Nurse ,Why cant i do this at home ,its only for Cholesterol ? she says because we do it here in a smart manner . I said in front of other patients see why i dont want to come here and have tests
one gal chuckled and the nurses face turned red .At that i said next time you think your going to shove that needle in me. do it easy . I got another chuckle out of that . People want to say something but they have been taught manners by their parents .But today manners take a back seat . They treat you like your a piece of meat . Geo

 

[Whitsend]

I have run into similar problems. I have stopped going to the ob/gyn because they just don't get it. I have a 'female' problem, but I'm not getting it taken care of because the gyn and his staff can't seem to understand that I cannot get up on their darn examining table, I can't move the way they want me to and I can't get back down. The last time I was there, I almost fell off the table and I was in better shape then. So, since my problem does not appear to be life threatening, I'll skip it.

 

[Geo]

Dont They Help You Up ? I Always Ask . Can You Please Help Me . My New Neuro Helps Me Get Up There On The Table ,i Always Seem To Try Front Ways And He Says No Back Up .im Afraid To Put My Hands In Back Of Me For Fear Of Falling . Geo

 

[Steve100]

Speaking of Morons, my Mother went to see a gastroenterologist 2 months ago and he said that as she was eating a little, then she could put off having the PEG.

The neuro came to see us last week and when we made enquiries, he said he wouldn't recommend it as she may not make it through. According to him, he wouldn't have recommended it even last October, but he may have been covering the gastro's arse. As it happens, I don't think she would have gone for one anyway, so it didn't make an huge difference, but if someone DOES want one, then make sure you get one STRAIGHT AWAY.