Aa
The story so far
Hi all well had my last appointment with the neuro i really should'nt have gave a second chance to , this is what he said this time ( actually just the same thing he said the time b4 just with a wee add on ).
He said as it stands he can only diagnose M.E / CFS
I dont have the energy to tell u what the whole appointment conversation was sorry but i will tell u all the outcome till now.
Before the last MRI's and nerve tests on my foot ,leg and wrist tests were performed he said he would have both sets of mri's 1st and last ones done ( he asked for the old ones for comparrison ) to show me and discuss if there was any change. Well he did'nt have any of them to show me , when i asked if there was any change he would not comment he TOTALLY evaded answering the question . Now my sensory symptoms are now so Pronounced in both legs and feet my feet are Buzzing 24/7 and have been this bad and constant for about 3 months is it Just COINCIDENCE that my MRI's showed change and so have my symptoms.
The nerve test studies showed No P/N but did show my muscles are IRRITATED ?? .
I know that M.E/CFS is a very dibilitating Illness but i have lots of other symptoms that dont fit that diagnosis and truely believe whats going on is Soooo much more than that.
What do u guys think i should do now, I am not going back to see this Doc as i feel he just is'nt looking deep enough into the things that are going on with me.
I have never had any mri's did with contrast , should he have did this ???
Oh guys i just dont know what to do now , can anyone tell me or advise me as to what 2 do now.
I am so confused, disappointed, and gutted that this man thinks i should be happy to wait and c if this thing goes DOWN THAT ROAD (meaning MS) that is the words he used to Reference MS.
Any words of wisdom would be very much appreciated. Sorry about thelong post ppl tried 2 keep it as brief as i could. Anyone who have'nt seen my previous posts as to what my symptoms are feel free to read them from my profile.
Take Care All
And Be Well
Julie xxxx
He said as it stands he can only diagnose M.E / CFS
I dont have the energy to tell u what the whole appointment conversation was sorry but i will tell u all the outcome till now.
Before the last MRI's and nerve tests on my foot ,leg and wrist tests were performed he said he would have both sets of mri's 1st and last ones done ( he asked for the old ones for comparrison ) to show me and discuss if there was any change. Well he did'nt have any of them to show me , when i asked if there was any change he would not comment he TOTALLY evaded answering the question . Now my sensory symptoms are now so Pronounced in both legs and feet my feet are Buzzing 24/7 and have been this bad and constant for about 3 months is it Just COINCIDENCE that my MRI's showed change and so have my symptoms.
The nerve test studies showed No P/N but did show my muscles are IRRITATED ?? .
I know that M.E/CFS is a very dibilitating Illness but i have lots of other symptoms that dont fit that diagnosis and truely believe whats going on is Soooo much more than that.
What do u guys think i should do now, I am not going back to see this Doc as i feel he just is'nt looking deep enough into the things that are going on with me.
I have never had any mri's did with contrast , should he have did this ???
Oh guys i just dont know what to do now , can anyone tell me or advise me as to what 2 do now.
I am so confused, disappointed, and gutted that this man thinks i should be happy to wait and c if this thing goes DOWN THAT ROAD (meaning MS) that is the words he used to Reference MS.
Any words of wisdom would be very much appreciated. Sorry about thelong post ppl tried 2 keep it as brief as i could. Anyone who have'nt seen my previous posts as to what my symptoms are feel free to read them from my profile.
Take Care All
And Be Well
Julie xxxx
Best Answer
Hi All
Saw my GP yesterday had a good talk to him about what was said during my last Neuro app.
He is totally behind me in what i want to do next.
I am making an appointment with a great Rhumy i saw last year, he looked at my 1st set of mri's and refered me back to neurology as he believed my problem was Neurological with a possible MS
So it will be interesting to hear what he has to say about the new Mri's in comparison to the last ones done.
I will let you all know what happens with this after i see him.
Many Thanks to all who helped with this issue i truely do appreciate all you did.
Take Care and Keep Well
Your Forever Friend
Julie xxx.
Saw my GP yesterday had a good talk to him about what was said during my last Neuro app.
He is totally behind me in what i want to do next.
I am making an appointment with a great Rhumy i saw last year, he looked at my 1st set of mri's and refered me back to neurology as he believed my problem was Neurological with a possible MS
So it will be interesting to hear what he has to say about the new Mri's in comparison to the last ones done.
I will let you all know what happens with this after i see him.
Many Thanks to all who helped with this issue i truely do appreciate all you did.
Take Care and Keep Well
Your Forever Friend
Julie xxx.
Hi Steph
Thanks for your reply it is very much appreciated.
My GP is great he is very willing to do anything he can with this situation.
He believes me that there is something going on which is neurological, but i have to make an appointment to discuss the outcome of the last neuro appointment and see were i go from here.
Maybe you and i should go to the doc together With your sx and my Lesions shurely its a Cut and Dried Dx (LOL)
Many Thanks again for your input and for taking the time to read and reply, as i feel i need all the help i get with this.
Take Care and Be Well
Julie xxx
Thanks for your reply it is very much appreciated.
My GP is great he is very willing to do anything he can with this situation.
He believes me that there is something going on which is neurological, but i have to make an appointment to discuss the outcome of the last neuro appointment and see were i go from here.
Maybe you and i should go to the doc together With your sx and my Lesions shurely its a Cut and Dried Dx (LOL)
Many Thanks again for your input and for taking the time to read and reply, as i feel i need all the help i get with this.
Take Care and Be Well
Julie xxx
Don't have much time today to post, but I would see a new neuro. You have to get someone on your side. Is your GP helpful? You need someone to advocate with you!
I've been undx for 8 years, but it's because my MRI is perfect. Not a single lesion. But clinically, it seems to be MS. My neuro won't dx me, but also isn't blowing me off. But with lesions and clinical sx, you should have a neuro who isn't dismissing you!
I've been undx for 8 years, but it's because my MRI is perfect. Not a single lesion. But clinically, it seems to be MS. My neuro won't dx me, but also isn't blowing me off. But with lesions and clinical sx, you should have a neuro who isn't dismissing you!
Hi Sarah
Thanks for ur input i really am grateful for any advice.
I have private health care so have the been seen privately.
This neuro is moving hospitals and to put it bluntly i will not be seeing him again.
Every time i see him my husband is with me because i forget a lot of things.
He stated quite clearly that i have a NEUROLOGICAL CONDITION the 1st mri i had i had muliple non specific lesions and now the New mri has changed and so 2 have my symptoms more of them and more pronounced, this neuro has only did a limited amount of neurological exams i just dont feel he tried hard enough for me.
I am going to make an appointment with my GP and c were we go from here.
Once again many thanks for taking the time to answer my post with out u guys i wouldnt know what to do.
Take Care and Be Well
Kindest Regards
Julie xxx
Thanks for ur input i really am grateful for any advice.
I have private health care so have the been seen privately.
This neuro is moving hospitals and to put it bluntly i will not be seeing him again.
Every time i see him my husband is with me because i forget a lot of things.
He stated quite clearly that i have a NEUROLOGICAL CONDITION the 1st mri i had i had muliple non specific lesions and now the New mri has changed and so 2 have my symptoms more of them and more pronounced, this neuro has only did a limited amount of neurological exams i just dont feel he tried hard enough for me.
I am going to make an appointment with my GP and c were we go from here.
Once again many thanks for taking the time to answer my post with out u guys i wouldnt know what to do.
Take Care and Be Well
Kindest Regards
Julie xxx
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I can really sense how incredibly frustrated you are feeling and that actually you know what you want to do..but just hope someone else will tell you. I notice that you are from UK and our medical system is obviously very different from the folks in USA.
I would suggest that you make an appointment to go to see your GP and use this time to outline what happened with your neuro. Be aware that Dr'/s are going to be very carefull not to criticise each other and obviously a Consultant is very senior to a GP so...... suggest that you voice what you are feeling.e.g. I feel very concerned about my dx backing this up with your reasons why you feel this dx does not fit. Ask you GP if he/she has any suggestions and it is was possible to get a second opinion, and if so how would you go about it.
I do not know how easy it is to change consultants and am fairly sure you would have to ask to be transfered to a different hospital and you may need to do some groundwork to find out where there is an MS specialist. The other expensive alternative wd be to go privately to get anouterh opinion but I think you are best sticking with NHS. I would question what the consultant said about your MRI results as my Consultant just has everything on his computer screen easily accessible so I am wondering why he would not discuss this with you.
My gut feeling is that you should go back to see your existing neuro, and take someone with you as an advocate who is prepared to support you if he evades questions...as this is not helpful to you. It would take courage to go back....but unless you voice what you are feeling you wd have to go right back to the start with someone new and it wd not be easy to change consultants.
You do not know the clear results of the MRI and you are entitled to this info and I think shd be able to see the radiographers report also. Did the neuro say when he wd see you again? I would also say that I think you shd have had an MRI with contrast to show if there any any active lesions.
Sorry you are having such a difficult time...but I would stick it out and request another appointment...but you would need to be very clear about what you want to say and have it all written down concisely.
Hope the weather with you is better than here in Gloucesteshire (rain) and I am going to an open air Shakespeare play this afternoon so wellies and waterproofs will be required.
Love Sarah x