quix question about neuro appointment tomorrow?

[uk2]

Hi hope you and others are well.

I have been working on my time line and spent ages on it as its been 2 yrs since the neuro discharged me and tomorrow i am back seeing him.

I was checking through the dx on the MS site to make sure i have gotten all in my timeline when i noticed that the dr does not take parasinia (sorry spelling) sensory sx as an attack is that at all or is that completly discounted as its not a proven thing due to only you feeling it.

I also read about lesions they see and ones they do in the exam but my neuro only ever does a qiuck ten min look so how can he tell a lesion in that short time.

do you think i have the right to ask for contrast of brain c spine and throasic as he never done contrast before and i feel i need this as i feelmy mri was done before my first real attack in May 2007 they were all dont in feb time but LP was done afterwards but i have heard alot of people dont have a LP positive.

also i am quite disabled by my attacks and have constant r sided weakness that never weavers and left shoulder and arm weakness. will they think this is too bad for MS as not fitiing into RRMS and more PRMS or is it just primary MS where sx do come in flares but the sx stay which is like mine it certainly does not come and go like the flares in fibro and i am always weak inbetween but can function o.k its only the weakness that stops me doing things and not the pain, its only the pain that stops me when in a flare if any of that makes sense lol
oh and also heat intolrance i as found out again on saturday when trying to go out for a meal the restrant was so hot i felt ill muscle were fatiuged i could barly ove had to go home after an hour sweating loads and when i hit the cold outside that makes me ill too lol person with me didnt know what to do and cried when i got home as frustrated.

I hate going through this again and feel like a school girl always hated dr from a child no offence lol but its a real fear of mine.

anyway hope you can answer my question most of my sx are sensory i do have eye pressure differecultie swallowing lots of slavia leg weakness and shoulder weakness are thses also sensory sx also am thinking i have wasted hrs doing my time line and filling it with things he is just going to throw away. They only seem to bother about MRI and not what the person is presenting though i do have hope as ther is one lady on here who was dx with her consultant saying 'if it walks like a duck it is a duck' lol and she had negative MRI 3 times and LP but after putting her on DMD she has felt great and not had a flare i just wish my neuro could offer this i dont care what it is but if there is a drug out there that can slow this down i would take it.

sam

[Wobbly]

Oh... I hope you are OK...how did it go... I just got online today and see that your appt was for today...

Let us know how it went...we are praying you have some answers to help you...

take care
ttys
wobbly
undx

[Eyesnlegs]

I hope everything has gone as you wanted I know what our NHS can be like.

((((((((((hugs))))))))))))

Pat

[LLWB]

Praying you get some answers today, or at least that the neuro will give you a thorough exam, and be willing to search for the problem. Take care, speak up, and stand up. If you fall over, that might be best, LOL.

Maggie

[uk2]

Rendean

Thanks hunni i so pray i can stand up for what i know is right instead of just sitting there and saying nothing. I so hope he is opened minded.

mand

yes you caught me in time appointment not till 510pm got to drop off kids on way to a friends, so nervous i feel sick!!

shell

thanks hun. really getting nervous now,silly his only a Dr, sometimes i think i cant do this again!! you pin all your hopes on something, i just want someone to say i believe you and although your last MRI 2 yrs ago were negative i want to get to the bottom of this no matter what!! would'nt that be an answer to prayer. miracles do happen!!

[sllowe]

Hey Sam,

All the best to you today, Sweetheart. I pray you get back to us w/a good report one that includes this Dr. wanting so badly to get to the bottom of what is causing your decline.

(((hugs)))
Shell

[Mand125]

Hi Sam

I hope I have caught you in time to say good luck today.

I hope you are back with a smile later. :)

Mand

[uk2]

Quix

Thank you so much for your reply it has given me abit of confidence and of the things not to say and to say.

He turned me down seeing me at the neuroscience hospital where he is based which is a shame and insisted seeing me at my local hospital which i guess is easier for him as they hold my records not me and he can pull them on his computer as if i went out of my area i would have to obtain all my notes for the last two years and take them with me. But the last time he did send me to the neuroscience hospital to do my LP and EMG but i had my MRI at the local hospital which has a huge waiting list and cause of cost hardly ever uses contrast although my ENT did order a brain MRI with contrast and was shocked i never had one before but i am still waiting for this?? but they are starting to give them out to private hospital now as they cant keep up with demand which might mean i land one who does not mind doing contrast who knows.

I have prayed alot about this and i am nervous as i prayed alot about it last time and i never got answers?? except maybe i have samanth lewin disease yes he really said that i cant believe i am going back to a neuro that said that to me, i wonder if i ought to remind him of that lol best not.

If this does not work out i will ask again to go to the neuro hospital but to someone different then him and that will be my last attempt as i cant go through this again its so draining as i know you know.

I cant thank you enough for your support over the years will either be on here with a smile or in tears later.

love sam xx

[rendean]

Just wanted you to know that I will be thinking of you and sending good thoughts and best wishes for a caring,  thoughtful and productive visit with your neuro. Remember it's your body and you have the right to know what is going on with it. You go girl! Stand tall and ask for answers to all your concerns and problems...he owes it to you. You can do this and do it well, I"m sure of it.

Good luck, hugs and prayers,
rendean

[Quixotic1]

Hi, Kiddo, I'll do my best to answer your questions.  

First, I pray you great luck with getting the attention of your neuro tomorrow.

Does a doctor count an episode of paresthesias (sensory symptoms) as an attack?  Well, they should if they remember their teaching to "always believe the patient first."  But, I have seen evidence here on the forum that some docs do not accept anything they can't verify.  So some neurologists will not give weight to complaints of numbness or tingling, visual disturbances, and pain.  Shame on them.

If they aren't going to give creedence to what the patient says, then it is their absolute duty to do a thorough - much longer than 10 minute - exam to look for things they can verify.  Someone asked me how long my neuro spends with me.  The answer is a minimum of an a hour.  The exam is about 3/4 of that time.  If the neuro does a shortened exam, only looking for the most common "clinical lesions," then they will find only those and miss the more subtle things that a real exam will show.  You may have to tell him about your tendency to fall or your tremors, of your double or jerky vision - or whatever things could be seen from the outside.

I think all people have the right to ask for contrast.  But, I get the feeling that the NHS governs the use of contrast, maybe only allowing it to be used if lesions are already seen.  What is to be lost by asking?  I think it might be more useful to ask him for a really careful and thorough neuro exam.

You are right.  It is not necessary to have a positive LP (that is an elevated IgG Index or 2+ O-Bands) to be diagnosed with MS.

He does need to understand that you are now very disabled by your constant weakness which has occurred since you saw him last.  As for whether he will assess you with PPMS, because of the constant nature of your weakness, I honestly don't know.  Certainly emphasize to him any pattern of attacks you are having, even if the increased weakness you get never improves.  That is pretty much the pattern I have - and my neuro says I have RRMS.

Tell him what you told us.  That what is disabling you is the constant weakness and that the severe pain you get is mostly when you get flare ups of all the symptoms.

Definitely tell him that suddenly you can't function when it gets warm.  Do not refer to it as heat intolerance.  Tell him that a restaurant that was too warm made you too ill and weak - it was hard to get home.  Tell him you can't even take a hot bath or shower without it making you very weak.

Definitely tell him that you have a feeling of pressure in your eyes and difficulties swallowing.  No, the weakness is not a paresthesia, unless it feels weak , but isn't.  Weakness is weakness.  He should be able to see the difference from side to side when he examines you.

There is nothing wrong with asking him to "Please examine me" if he seems to be ignoring what you say.

If he only reads the MRI and doesn't care what is happening to the patient, then he is a loser beyond redemption.  We have had people here, though, get the attention of a doctor like that by really insisting that they be examined and taken seriously.  You lose nothing by making such an appropriate demand.

And definitely let him know of all the other doctors (RHEUMY, GP, ENT, Doc from A&E, etc) who are sure that this is a neurological problem and not Fibro.

As for your timeline - he either will be interested or not.  At least you have it to refer to.  You did not waste your time.

Question - is the opportunity to be seen at the better Neuro hospital still there?  

Good luck tomorrow,

Quix

Let's hope that he is shocked