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Old 07-28-2007, 07:33 AM   #1
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Sarahlou HB User
Terrible neuro appt.....feel like bursting into tears!!

Hey guys,

I've come to the only place where i feel you all understand what i'm going through...............I'm sooooooo very upset and frustrated today and just don't know which way to turn next!!

I'll give a brief history.......I woke with terrible neck pain back in April, unable to move head and basically a feeling like my neck is weak and unable to keep my head up! After going to chiro etc i ended up going privately to an Ortho surgeon.....he did a cervical MRI and found a prolapsed disc. I thought i'd found my diagnosis but he wasn't convinced all my symptoms where from this disc, said it wasn't that significant, some of these symptoms are an involuntary twitch/spasm in legs, weak arm, dizziness, numb hands, headache, extreme fatigue and i generally feel very ill, been off work now since June!! Anyway Ortho man ordered a brain MRI which came back saying i needed a referral to a neuro as white spots found.......I went a week later and he looked at the brain MRI and said that he wasn't too concerned, he said they were questioning MS but for now he wanted me to undergo physio for the neck which he felt wasn't anything to do with the brain MRI!! I've since had 4 physio sessions which honestly make me worse so i brought forward my neuro appt which was today! I wrote down all my symptoms (2 pages worth) and walked into his office hoping he'd take me seriously........WELL HE DIDN't, he just looked at all my symptoms and said i should call the undertaker now!! He just more or less ignored them all!! He then did a neurological exam which he said was OK......My worst nightmare was that he was going to do exactly what he done!! Ignore me!! I at least hoped he'd order some more tests but no!! He thinks i should carry on with the physio and go back to Ortho man but i already know ortho man doesn't think all my symptoms go with the prolapsed disk diagnosis!! I'm really frustrated, all i want is to feel OK! I think its defo 2nd opinion time.............does anyone out there no of any good, understanding neuros who will listen to me and take me seriously???? Also i dont agree that the neck/brain symptoms are 2 different things, i think they are related but this neuro doesn't think they are!!

Sorry to rant on, i know many of you are in a similar situations!

Any advice is truly welcome as are your neuro recommendations, i'm based in Wembley, Middx..........So anyone from the UK have any good neuros?

Thanks in advance for any help you give me.........

Wishing you all pain free days

Sarahlou

 
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Old 07-28-2007, 08:11 AM   #2
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Jill1221 HB User
Re: Terrible neuro appt.....feel like bursting into tears!!

Oh Sarahlou I am so sorry that it didn't go well. It is awfult that you had to wait so long to see this jerk just to have him dismiss you! I have had my symptoms since April too and it gets so depressing not knowing what is wrong. Absolutely see someone else, do not let this "doctor" get to you. Just do what you have to do to get well. He should suffer from crazy symptoms for months on end!!!!!
I am no expert, just someone who reads way too many posts looking for answers so I wonder with your neck pain if you have also looked into Lyme disease? I have seen posts where your symptoms may be consistent with Lyme as well? Is this something that even occurs in the UK? Just a thought.

Good luck to you, keep us posted, and don't let this guy ruin one more second of your life!

Jill

 
Old 07-28-2007, 08:26 AM   #3
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Skinnyjess HB User
Re: Terrible neuro appt.....feel like bursting into tears!!

Gosh Im sorry you hit another road block but your doing the right thing by looking for a better Dr. Some Dr's treat you like your a wast of there time. I have been treated like that too and im sorry that this happeneds to anyone. Dr's are suposted to find whats going on but it seems like most of them hate there jobs and want to be someplace other then in a room with a Pt.

 
Old 07-28-2007, 08:29 AM   #4
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Sarahlou HB User
Re: Terrible neuro appt.....feel like bursting into tears!!

Thank you so much Jill, i'd like this neuro to just for one day feel like i do and then tell me its nothing to worry about!!! I have never in all my 34 years felt as ill as i do right now! I couldn't possibly be more positive in trying to get well but nothing is helping (physio etc). I've had bloodwork done which came back normal, i've also looked into Lyme disease but thats as far as its got! I dont have any rash! I just need someone to take me seriously and at least do some more testing! I have an ortho telling me its not my neck and a neuro telling me it is..........who do i believe, meanwhile i'm getting worse!! Oh such fun........NOT!!

Anyway thanks again for your kind words, i will defo be getting a 2nd opinion!

Take good care

Sarahlou

 
Old 07-28-2007, 11:46 AM   #5
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duttin HB Userduttin HB User
Re: Terrible neuro appt.....feel like bursting into tears!!

Sarahlou,

Sorry to hear that you have fell into the ranks of dealing with a defective neuro.

If a DR told me to call an undertaker I would ask them why is he gonna need it.!!!!

Get your medical records from the quack of a neuro,from the ortho,from the physio and call a ms specialist,can't find one one call your local MS society and ask them for names of them.

If you continue to get worse,keep calling this neuro,tell his office that you don't want dismissed.Sometimes ya gotta really push these neuro's to be straight forth.Be a pushy patient.

I don't know how the UK's medical works.

 
Old 07-28-2007, 12:07 PM   #6
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Sarahlou HB User
Re: Terrible neuro appt.....feel like bursting into tears!!

Thank you so much guys for all your comments and suggestions.......It is really appreciated. Nuffs i'm loving what you said i should of said to neuro after his undertaker comment, if only i had thought of that at the time heehee. I just feel so ill and i know they are the specialists but i know my body and something is really not right, just want to be taken seriously, not too much to ask i think.............I feel so weak and it would be easy to give up but i won't so 2nd opinion here i come!! fingers crossed this next neuro whoever it may be has more sensitivity and understanding!!

Take good care all

Sarahlou

 
Old 07-28-2007, 01:17 PM   #7
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MS for life HB User
Re: Terrible neuro appt.....feel like bursting into tears!!

What exactly did he do during his neuro exam? I have to say I think I lucked out with mine being so thorough, although looking at the bills coming in, I'm also thinking had my husband not had such good PPO insurance, he may not have ordered all the follow up tests that he did. Of course, I did have nine lesions on my brain MRI, with two as he said, significant ones. Does that make such a difference?

Just for reference, here is everything that I have had done to rule out/in MS. It may help you in asking questions at your next appointment.

MRI (brain and neck/spine with contrast)
Echocardiogram, to be reveiwed by the cardiology specialist
Nine vials of bloodwork, could not begin to tell you everything they tested me for but I know a few were, B12 deficiency, lyme disease, blood clotting, etc.
Ultrasound of my neck
Nerve conductivity test, they also tested me for carpal tunnel during this test, in both my hands and feet

I'm thinking that is all that I have done, but my "brain fog" may have missed something. It's been said a few times since I've been reading this board, but some neuro's don't like you to come in having already diagnosed yourself. What I often do, is do my research so that I am understanding the terminology, etc. but then act sort of the dumb patient once I am in there (I need a reason for spending so much money to still be a blond) and see where it leads me. This way I actually understand more, but he still says it in layman's terms. Then if he misses something I really want addressed, I simply say, "Well, my friend said something about did I have an MRI of my neck also? Why would I need that?" Then he can explain why he is not doing that test. Hope this helps.

 
Old 07-28-2007, 01:49 PM   #8
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Sarahlou HB User
Re: Terrible neuro appt.....feel like bursting into tears!!

Hey MSforlife, thank you for taking the time to listen and respond, it does mean a lot to me especially right now when i feel so alone!! Basically he laid me on a bed, made me push with my hands against him, made me put my finger to nose, ran a stick along the base of my foot, looked in my eyes....i think thats about it.................

The only tests i've had so far are a cervical MRI (no contrast) and a brain MRI (no contrast). The cervical showed a bulge/prolapse in my neck and the brain MRI showed white spots which is when i was referred to the neuro!

I also went to this appt not wanting to look like a smart arse as i have also done a great deal of surfing on the internet to get a little bit more clued up! Now then i've read post after post of MS patients say that they have terrible neck pain as if their neck is weak and can't hold their heads up, well this describes me!! So why does this neuro seem convinced that the neck and brain symptoms aren't related, he said this again today and i so wanted to say "but i've read blah blah blah" but i stopped myself!!

Anyway i must keep fighting even though i feel like i'm being laughed at as i know something is wrong!!

Thanks again and take good care

Sarahlou



Anyway

 
Old 07-28-2007, 03:53 PM   #9
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Re: Terrible neuro appt.....feel like bursting into tears!!

Sarahlou,

Stay strong and you listen to your body.
Here's the test I have had to DX MS
3 brain MRI with and without contract
3 c-spine mri's
1 thoracic
1 lumbar
EMG/NCS
myelogram
lumbar puncture
VEP
SSEP
ENG/VNG
EEG
Multiple blood work
CT Scan

So,its not easily to DX in some of us.it took 2 years.And it took the 4th neuro,so i definatly understand how frustrated you were when you left his office.be your own advocate.

 
Old 07-28-2007, 05:05 PM   #10
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zandvoort HB User
Re: Terrible neuro appt.....feel like bursting into tears!!

Quote:
Originally Posted by Sarahlou View Post
Thank you so much Jill, i'd like this neuro to just for one day feel like i do and then tell me its nothing to worry about!!! I have never in all my 34 years felt as ill as i do right now! I couldn't possibly be more positive in trying to get well but nothing is helping (physio etc). I've had bloodwork done which came back normal, i've also looked into Lyme disease but thats as far as its got! I dont have any rash! I just need someone to take me seriously and at least do some more testing! I have an ortho telling me its not my neck and a neuro telling me it is..........who do i believe, meanwhile i'm getting worse!! Oh such fun........NOT!!

Anyway thanks again for your kind words, i will defo be getting a 2nd opinion!

Take good care

Sarahlou

Sarah- I was diagnosed with Lyme yesterday. I was in teh EXACT same boat as yourself. 50% of lyme patients never have a rash or know where their tick bite comes from. Jill is right- this sounds a lot like lyme. MS and Lyme are very close in symptoms- my docs chased MS till they were convinced it was not that and then told me it was all in my head. I had a negative lyme tests so they told me that was not it either. Then I found Dr.
Burrascano's Guidelines to diagnosis and treatment of Lyme and I could not believe how similar my symptoms were! I found out lyme tests are notoriously inaccurate and often give false negatives. I found a lyme specialist- most neuros still think Lyme is some fairy tale or you have to have the rash- and he diagnosed me in 20 minutes. He said it was very obvious to him and I had other indications as well. Check out the document above- it has a symptoms checklist you can use to see if it makes sense for you to pursue that path. My research says Lyme is in the UK.

Best wishes- I know my one year journey into dx never land was h**l. I pray yours is easier.

 
Old 07-29-2007, 09:30 AM   #11
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Sarahlou HB User
Re: Terrible neuro appt.....feel like bursting into tears!!

Just wanted to say a big big thank you to everyone who has taken the time to listen and reply to me..........Today i'm still feeling very frustrated about yesterday and the more i think about it the more angry i get with some of the comments he made..........but i'm also even more determined to find out what on earth is happening to me!! I know i'm not imagining any of this, i also know i feel very unwell........I truly believe the unknown is worse than the known!

As for Lyme disease, how is that diagnosed as i have had bloodworks done?

Thanks again for now........take good care all

Sarahlou

 
Old 07-29-2007, 02:45 PM   #12
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zandvoort HB User
Re: Terrible neuro appt.....feel like bursting into tears!!

Sarah- for diagnosing Lyme you need to find a Lyme Literate doctor (LLMD). I am not sure how to do that in the UK except look on the web. There is a LLMD thread on the Lyme board at this site. Maybe you will find someone. If you read that doc it helps you know what to look for.

Best wishes, Deb

 
Old 07-30-2007, 07:35 AM   #13
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Sarahlou HB User
Re: Terrible neuro appt.....feel like bursting into tears!!

Thank you so much for that info Deb, it really is so appreciated!! I guess i'm just clutching at straws and willing to try anything in a bid to feel well again!! I shall certainly keep open minded about Lyme as i must say it is very similar to what i'm going through minus the rash!!

Take good care

Sarahlou

 
Old 07-30-2007, 01:42 PM   #14
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zandvoort HB User
Re: Terrible neuro appt.....feel like bursting into tears!!

Sarah- only 50% of the people infected with Lyme get the rash. Also, I think the UK uses another term for the disease- it is not Lyme. If you look for the Bb designation, you should find it. Good luck!

 
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