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BeckyUK

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Joined
May 10, 2010
Messages
27
Reason
DX UMND/PLS
Diagnosis
05/2010
Country
UK
State
UK
City
Sheffield
Hi,

I am new to the forums but have been viewing for some time since my diagnosis was underway, but now I feel completely confused after my latest neuro appointment. Grateful for any insights you may have.

I have been seeing my neuro for around 2 years now and have undergone the usual battery of tests. I have positive Babinski, clonus in both ankles and hyper-reflexia along with spasticity in both legs. I have had MRI scans and lumbar punctures to rule out MS, all the usual blood tests for Lyme disease and B12 deficiency and have had the genetic tests for HSP. All have come back negative.

At my last neuro visit I received the news that there was only one set of tests left to try but that they didn't feel that it was in my best interests to carry out the tests. A positive result would leave me labelled with an incurable illness and a negative result would mean that they had no idea what was wrong with me. The neuro feels certain I have PLS but there is no point in confirming this until my symptoms need treatment with Baclofen. Until then he wants me to carry on in blissful ignorance as he thinks it would be best all round. He advises that as I am young (38 years) the illness may progress slowly and I could manage for years without a diagnosis. He has said he will see me again in 9 months time but to give him a call if my symptoms worsen.

Has anyone else experienced this from their neuro? He seems to think that not knowing is the best thing for me but I'm not so sure. In the meantime I'm having to have a Occupational Health Assessment at work as my balance issues and inability to climb even one set of stairs is starting to affect my work, but my neuro will only say that I have 'spastic paraparesis of unknown cause'.
 

marya

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Lost a loved one
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0/0000
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I think it's very strange for a dr to not want you to have the diagnosed. I don't agree with him and if it were me I would find another doctor for a second opinion (or opinion at all since you don't really have one)
 

Twinsmom

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Sep 2, 2009
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604
Diagnosis
07/2009
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FL
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We've experienced a similar response from one of our neurologists. Is he trying to avoid the PLS diagnosis?

I actually asked our neurologist, and his feeling was that if there was ANY possibility it could be something OTHER than ALS, then he was going to be focusing on the OTHER. Because EVERYTHING else has some type of treatment possibilities (or at least a less horrific outcome)...
But, I think you have to decide what kind of person you are...an "ignorance is bliss" sort, or "I'd rather know than not know"...and then give your doctor the feedback.

I also think that doctors really avoid a diagnosis that there's no "treatment" or help for-makes them feel rather inadequate :-(
 

marya

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Melody, I think you're right about that - My husband was w/ a neuro since 2005 but never got a diagnosed from her - she's the one who told me he definitely didn't have ALS so I didn't need worry about that. You're theory could be on target on our experience too. Mary
 

ValRunk

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Joined
Mar 27, 2010
Messages
47
Reason
DX UMND/PLS
Diagnosis
09/2009
Country
US
State
NE
City
Scottsbluff
I was diagnosed with PLS in 9/2009 after suffering from progressive symptoms since 1999/2000.;)
 

Northern Dancer

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Joined
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Messages
216
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DX UMND/PLS
Diagnosis
01/2010
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CA
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Quebec
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Montreal
Becky,

I was diagnosed with PLS in January this year. The cause is unknown so I, too, would be classified as having spastic paresis of unknown origin. PLS is just a label describing a set of symptoms.

Today the neurologist who was filling in for my own doctor was very interested in whether anyone in my family had had polio since my symptoms are similar to what he called Post Polio Syndrome. If it could be proved that I actually had been infected with a mild case of polio as a child (and that it went undetected ) my diagnosis would then be changed to post polio syndrome.

Labling you with an illness could cause you to be excluded from something like life insurance if you are not already insured. ( I realise that being in the UK it doesn't affect your health coverage ) So I wouldn't chase the diagnosis - it hasn't changed anything for me.

ND
 

sadiemae

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Joined
Sep 20, 2009
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2,397
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Lost a loved one
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US
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NV
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Reno
When we went to the emergency room after I figured out my husband had ALS, they sent in a neurologist to examine him. About 20 minutes into the exam, I told her I thought my husband had ALS, and she said, You are right, that is what he has. I still feel to this day that if I hadn't said anything, we would have had to wait a lot longer for the DX. They admitted Les into the hospital for 7 days to run tests to rule everything else out, and the DX stood. I am glad that she was upfront and honest from the very beginning. Knowing is so very hard, but I was glad we were not left in limbo because the doctor was afraid to tell us the truth. HUGS Lori
 

cemc

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Learn about ALS
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rural
Unfortunately I don't think your experience is unusual for the UK. It really does seem that neuros in the UK are incredibly reluctant to give out diagnoses for anything unless they are absolutely 100 percent sure of it. I really don't know why. I don't think it even occurs to them that having a name for it really does matter, even if it is a scary kind of disorder. Being left in the limboland of no real diagnosis is so much worse than actually being able to name it.
 

ValRunk

Active member
Joined
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Messages
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Reason
DX UMND/PLS
Diagnosis
09/2009
Country
US
State
NE
City
Scottsbluff
I know exactly how you feel! When I first had symptoms I mentioned them to my GP (I was there for something else) and he ignored me. When I said something about one year later, he referred me for a brain MRI (I think it was more to shut me up). The brain MRI came back and I was referred to a neurologist who ordered a spinal MRI and a Nerve Conduction Study. The subject was then dropped by him . . . when we transferred I had to start all over again. My GP (in Virginia) referred me to the ENT because he felt the loss of balance was an inner-ear thing. The ENT said it had nothing to do with my inner-ear and ordered ANOTHER brain MRI. After an EMG, the neurologist there diagnosed me with Limb-Girdle Muscular Dystrophy in 1/2005. When my husband retired from the Air Force, we settled in Nebraska and I found a new neuro here. She said she didn't believe that diagnosed was right and ordered ANOTHER brain MRI and spinal MRI, then a spinal tap, ANOTHER EMG AND NCS, and lots of blood work. She still couldn't figure it out and sent me to a neuro in Colorado! He diagnosed me with PLS!
She is right to say that they don't understand that a diagnosed, to put a name to the ugly face and know/prove that you aren't crazy and making this stuff up, sometimes is what is needed! Granted, this is not what I was hoping for (I really wanted something I could take a few pills for and it would go away!), but it was nice to know it was something and that I wasn't as crazy as I was beginning to think I was!:neutral:
 

scouse

Active member
Joined
Mar 3, 2010
Messages
37
Reason
PALS
Diagnosis
04/2010
Country
uk
State
merseyside
City
liverpool
Hi
I posted here in march having had symptoms for 1 year I told my Neuro in February my suspicions having googled for a long time and viewing this site also "patients like me "site I then had EMG in April (the wait was because I was on holiday ) I was diagnosed with Motor Neurons in
Apiril I didnt ask what kind as you know in the UK they dont talk about ALS however my Neuro said it was progressing slowly
I did have fasciliations when had EMG so wasnt shocked with the diagnonsis touch wood up to now my slurred speech is only slowley going worse I can still be easily understood after about 15 months I get cramp in my hands sometimes and my hands are weak especially when cold they just dont work (think I will have hibenate in the winter )I started on Rilutek on Saturday and felt really weak and speech was bad yesturday but I put that dow to Rilutek and jet lag I only got back from Las Vagas on Thursday however felt fine today and speech was better
speech therypist came today and ticked okay for the majority of the boxes still eating drinking normal and she says I am still intellagable and easily understood I cant understand a neuro not finishing the test ,waiting I think is worse than knowing I actually felt better knowing having suspected for 6 months I had MND I am now getting on with my life ,it was on hold last year waiting for various d/r appointmens I am off on a cruise all being well next Month
love to you all
take care
Scouse
 

BeckyUK

Member
Joined
May 10, 2010
Messages
27
Reason
DX UMND/PLS
Diagnosis
05/2010
Country
UK
State
UK
City
Sheffield
Thanks so much for all your insights and experiences. It's really helpful to get some other opinions when you just don't know where to turn.

In the UK the doctors always seem to do the same thing - at your initial consultation they go 'all in' and tell you exactly what they think is wrong (my original neuro told me that he was 70% certain I had MS after my first visit). After all the test are complete and they get closer to a definite diagnosis they shy away from giving it. Scouse, you are absolutely right that in the UK we only talk about MND and there is no distinction between the types. We all think we will end up like Stephen Hawking!

My neuro only gave one thing away at my last visit, that my spastic paraparesis was caused by the 'premature aging or death of my upper motor neurones' but then backtracked immediately and came up with the 'unknown cause'. I was so confused it was only afterwards that I realised he was telling me that I probably had MND. In some ways I can understand his reluctance to pin a diagnosis on me as there is still plenty of time for me to start showing LMN signs and a PLS diagnosis would go out of the window!

Best of luck to you all in getting the news you want, whatever it may be!
 

Ladyinn

Distinguished member
Joined
Apr 7, 2010
Messages
398
Reason
PALS
Diagnosis
11/2009
Country
US
State
South Dakota
City
Custer
Becky, I saw an neurologist in SD for three years before I went for a second opinion at Mayo Clinic. The doc here, who I trust and feel good about, kept suggesting a second opinion two years earlier but I was confident things would improve if I just gave it time. After the ALS diagnosed at Mayo, I returned to my doc in SD and he told me that he wasn't surprised but doesn't like to make a terminal diagnosed without a second opinion. He is the ALS specialist in RC and is the doctor at the ALS clinic so is very knowledgeable and familiar with the disease. None the less he is hesitant to tell a patient that ALS is the diagnosed without a second opinion. Suppose it eases his concious to let someone else deliver the news....

Since my diagnosed in Nov 09 he has been extremely helpful in helping me secure whatever I need to make my life easier. I wish I had listened to his recommendation in 2008 when he suggested I go to Minnesota to the Mayo Clinic for a second opinion -- I might have saved myself a lot of falls and fears. :)

Good Luck to you in getting a diagnosed that helps you deal with whatever it is that you are fighting.

Diane
 

AKmom

Senior member
Joined
Jun 2, 2010
Messages
606
Reason
DX UMND/PLS
Diagnosis
11/2009
Country
US
State
Alaska
City
Wasilla
I am in the same boat. Trying to figure out all the problems. Out of the many different neurologists I have seen over the years who would run a few tests then I never hear from them again...this last one actually had something to say. He said I should go to Mayo Clinic because he wasn't certain what I had but it could be PLS and at Mayo they had the best docs. Then I get a letter from Mayo saying that the report didn't meet the requirements. So my GP wrote up another request and we still haven't heard whether they will take me. Its obvious that there is something wrong and progressing...more quickly these past two years than in years before '08. I don't know why some neurologists just don't do all the possible tests without having to pay for expensive air flights and hotels on top of the medical stuff (I would much rather spend the money on a cruise, especially if all the tests are negetive and they scratch their heads and say "I don't know it could be...."). And outside of a muscle biopsy...I have already had every test available (that I know of)...bloodwork, genetics, mri of head, neck and back, EMG, spinal tap...what is left to do?

Sorry to vent on your thread. But I agree...where do I go from here?
 

Alyoop

Very helpful member
Joined
Jul 5, 2010
Messages
1,782
Reason
DX UMND/PLS
Country
NZ
State
NZ
City
NZ
Hey Becky.
I have rercently been diagnosed with possible PLS. I am also married to a neurologist so maybe have an insight into how they think. My neurologist just started playing games and with me and had labelled me a neurotic neurologists wife. He ignored my increasing symptoms and gaaaaave up even examiming me. It drove me and my husband crazy. I saw a new neurologist, who after a short time recognised my spasticity, hyperreflexia, clonus etc as being real. He said it was hard to give us PLS as a possible working diagnosi, but it lifted a huge weight from my sholders. Having a label made me feel less scared. I always said I would rally and cope if I just new what I was dealing with, and I think I have. Not kowing what to tell people was awful. I was embarreassed about my strange walk and my turning in feet. I looked like a Duck.
You need to know. Sitting waiting will not be helpful for you. It sounds like your neurologist is just fine, but does not understand how important it is to have a "label". I don't understand why you should have to wait to have Baclofen tho. It has made a huge difference to me. It is a pretty harmless drug. I play around with the dose to get maximum improvement to the spasticity without it affecting strenght. You have to get the balance right. Sometimes the spasticity gives you stability, take that away and you can get too weak to stay upright.
PLS is very hard to diagnose, and the Neuros often get it wrong, thats why its so hard for them to step up and say. My first one (that I sacked after 3 years) has a reputation for never diagnosing anyone if there symptoms are out side the Box.It was his personality, hes jusrt that way. Maybe you should have a go with someone else.
Take care
Aly
 

johnnyliverpool

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Joined
May 30, 2010
Messages
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Country
uni
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wales
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swansea
Beck...blame the british health service...feel a tad sorry for the yanks cos there going to pay through the nose for a five hour wait in casualty..anything you aint paying for gets what there paying for..if you get my drift!..anyway what am saying is yor treated as a free loaderand cos your not paying dont you dare complain....so the likes of you and me get fobbed off.......like it or lump it ......go see em privately..stick a few quid on the table and you will get treated like a queen.........and find out all you need to know.........but i aint paying....sod em.........good luck..johnyangry.. cos i paid through the nose in taxes to support this shambles..
 
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