No diagnosis yet?

[Maggiemoomoo]

Hi, I have already posted on the PLS forum but thought I would post here as have not yet got a diagnosis. Symptoms started about 2 1/2 years ago but only became noticeable about 18 months ago. It has been very gradual. I have been to see 2 neuros. I have spasticity in my legs. Dysarthria in speech worsening on tiredness. Fatigue. Emotional lability. I have had tests. MRI brain and spine, LP, and evoke potential test normal. On EMG I have acute denervation in gastrocnaemius bilaterally and paraspinal muscles. I have brisk reflexes in legs. Positive babinski sign. I have cramps and spasms on waking. No sensory involvement. Cannot run but can ride a bike. My last visit to my neuro he said that he cannot give me a diagnosis and that he thought it was some form of motor neurone disease and to return to see him in 6 months. I originally went to my local hospital but the neuro there had no idea so he sent me to london to see a neuro who is top of the field. Just wanted your thoughts on this. As you can imagine I have all thoughts going through my mind although I'm quite positive.

 

[MaxEidswick]

>a neuro who is top of the field.

Do that and don't worry!

 

[Maggiemoomoo]

Thankyou Max. :-D

 

[Atsugi]

Welcome, Maggie.
On the bright side (if there is one), it may not be ALS.
My understanding is that PLS is not fatal. ALS is.
Sorry to hear you're having to go through the waiting.
Your certainly welcome to share your experiences here.
Keep calm and carry on.

 

[Maggiemoomoo]

Hi Atsugi, yes it's the waiting and I really thought my neurologist was going to tell me what it was but don't think that he wanted to commit hisself yet. I have given up my job for a couple of months because of stress and long hours to see if I feel any differently in terms of the fatigue. I was a geriatric nurse on a busy ward. I'm thinking positive and have found it all really interesting funnily learning about neurology. X

 

[Kosmoskatten]

The waiting game is never easy, but keep thinking positive. At my last visit my neuro told me (again) that ALS was off the table for now, and that was a relief. I doubt I will get any diagnoses on my next visit either, unless something else shows its face, or I progress more quickly. In neurology, progression is very often what leads to the diagnoses, and I am in no hurry to get there in that sense.

With MND, in my opinion, it is not about neurologists not wanting to commit, it is about the fact that they have to exclude so many other things. It is a fine line to balance when it comes to point of diagnoses, but imagine being misdiagnosed with MND.

Have you got baclofen for your spasticity? Mine arrived as a later symptom, but I am now on a smaller dose of baclofen, and it has helped me immensely.

Since I am a medstudent I have had the opportunity to meet two PLS patients ( in Sweden, it is a very rare diagnoses ), and they have both lived 7-10 years with the diagnoses. So even if life changes, you go on living.

 

[MaxEidswick]

> but imagine being misdiagnosed with MND

I know of three that have been misdiagnosed, one for three years! Damn near malpractice.

 

[Kosmoskatten]

10-15 years ago, the percentage of misdiagnoses was 7,5%, but after revised chriterias and a longer process, this number is today ( according to medical surveys ) 1-2%. Percentages are still to be taken with a pinch of salt, since there is always a large number of people who are never taken into consideration due to different reasons, but still.

The most common misdiagnoses in Sweden is still Lyme, since in the nordic contries, the array of testing and the procedures are still lackluster.

 

[Maggiemoomoo]

No I'm not taking anything for the spasticity. Iv had it for so long I think I'm used to it, it's annoying in the morning as I am so stiff I am falling all over the place. I don't like taking any sort of medication unless I really had to. Iv been having lessons for Alexander technique quick I think has helped a bit so continuing with that and just trying to be positive.

 

[MaxEidswick]

>I am falling all over the place

Falling is VERY bad and must be taken seriously.

 

[Maggiemoomoo]

Well I'm unsteady and manage to right myself and hold onto the walls. When iv warmed up I'm ok. The last proper fall I had was last summer when my foot caught on the floor and I fell flat on my face on the ward where I worked. Felt like a right wally. No damage though. X