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Steve100

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Hi

I've included some of the medical reports on my Mother - can anyone tell me if theres anything here that suggests anything OTHER than MND, or if it all fits the Diagnosis? Aplogies for the lengthy post, but there'll be no more like this :)

Steve

June 12 – Gp - On examination I could find no real demonstrable weakness in any of her muscle groups. Her reflexes were extremely brisk and her sensations were normal. Blood tests show ESR of 30 and a slightly raised isolated bilirubin of 32 which is probably not significant.

27th July – Consultant Physician

Symptoms include sensation of muscles tightening up, especially in her neck, feeling tired all the time, poor appetite, weak knees, slurred speech and dysphagia. She is hypothyroid and on replacement therapy for vitamin D deficiency. Systemic enquiry was unremarkable. Speech was slow, Mild dysarthia. Appeared to be fasciculation in her tongue and pwer was reduced in all four limbs,grade 3 mostly. There was small muscle wasting In her hands and deep tendon reflexes were bilaterally brisk. Plantors were extensor bilaterally. There was no clonus or fasciculations. Light touch and pin prick were present throughout , there was some subjective loss of pin prick sensation. There was no sensory level. Co ordination was normal

21st September 2007 – Neuro.

Some pin and needles in her right leg. Normal eye movements and fundoscopy She had rather brisk facial reflexes, She was slightly weak in neck flexion and globally weak in both upper and lower limbs, There was a hint of increased tone although it was not very dramatic in both the upper and lower limbs.

Her reflexes were brisk in the upper limbs, present at the knees and absent at the ankles. Bilateral plantar extensor responses.

In summary she seems to have predominantly motor signs which are a combination of upper and lower motorneuron in nature.

She has had several investigations, including a nerve conduction test, which has shown essentially, normal motor conduction with sensory action potentials of –in the right finger three – of 11.6 and in the right ulnar of 0.5 with an absent right seural.

Emg has shown fibrillation potentials in right tibialis anterior, right quadriceps, right deltoid and right first dorsal interosseous

There were polyphasic units in right tibialis anterior and right quadriceps.

I agree that motor neurone disease does enter the differential diagnosis although the only signs of definite wasting that I saw was in the first dorsal interosseous and one could argue - particularly given the low sensory action potential in the ulnar nerve - that these are the effects of pressure – because she is mainly sitting down now. One could suggest that it is a predominantly upper motorneuron problem that she has, with the only lower motorneuron feature of an unequivocal nature is the wasting in her hands which, as mentioned above, might be due to the effects of pressure on the ulnar nerve,
03/10/07 - Neuro
The lady has had an MRI brain scan which shows several tiny high areas of signal abnormality in the frontal parietal lobes bilaterally but no evidence of mass effect or haemorrhage.

The very small areas of increased signal are non specific. No other significant abnormality is demonstrated.

05/10/07 – Neuro

Diagnosed with MND – MRI of brain and spine which were normal and EMG ‘which was supportive of the condition’. Normal full blood count and normal protein electrophoresis. Her thyroid function and calcium are normal.

Some abnormalities of the liver function test – in terms of a raised ast and raised alkaline phosphatase level - Ck level of 202.

Thyroid function – TSH +6.33
Free T4 -11.7

MR Cervical spine – Slight movement artefact on the sagittal imaging. The spinal cord and central canal appear unremarkable. There is no evidence of cervical myelopathy. Craniocervical junction relationships also normal.
 

Steve100

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ccox

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Goodness, your report is over my head--too much "doctor speak". My mother and her husband never shared any of the outcomes of her testing other than it's final outcome. Honestly, I don't think their docs shared specific numbers with them. Could you post with simple symtoms (having trouble swallowing, walking, buttoning button, breathing, coughing, etc.)?

I'm sorry all the tests seems sort of inconclusive. I would guess that the neuros would send her to an ALS specialist if they believed her information lead them them in that direction.
Do the folks in the UK differentiate between kinds of MNDs? Do they call it ALS, or is it just considered an MND and they treat it the same as other MNDs (like Muscular Dystrophy?)? Maybe it would be worth talking to the neuro about. See if your Mom can get another appointment or simply a phone consultation and ask straight out---does she have ALS?

I'm sorry you got left hanging with no answers here. Sometimes that happens, no offense to you.:)
 

Steve100

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Hi - Thanks for the reply. In all honesty, she's been diagnosed with Als and is wheelchair bound, and having difficulty swallowing and speaking etc. I just wanted to post these 'to be absolutely sure'. I have more faith in the people here than the doctors we've seen. Her GP asked me last friday what ALS was (this was despite promising to look into it four months ago:?.
 

olly

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hi steve

im sorry to hear about your mother.im in westyorkshire i have family in aberysweth.
i have pls umn symptoms but i do have some slight lmn involvment, im waiting to go to mnd clinic as my neuro wont tell me for definate and is not experienced enough ,im also having emg. i had to get referal from my doc to clinic,i would recomend you see your mums doc for a referal to a mnd neuro for a definate diagnosed.
how long has she been ill?. with vauge lmn signs they like to watch progression before a diagnosed of als or pls. i too have definate muscle weakness and fassics,but no atrophy thats the only lmn symptom i dont have.
let us know how you get on if you ask to see mnd neuro/clinic
best wishes to you/mum and family
caroline
 

Steve100

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Hi Caroline, sorry to hear about your illness, I hope everything works out as best as it can. Can you tell me where the MND clinic you will be using is? I asked the GP about an MND specialist, but she only knew of ones in London etc. I don't know if this is because Wales is a bit small to maintain a specialised clinic, or whether she is unaware. I asked her about Lithium too, but she said that she couln't prescribe it in the dosage required because it hasn't been licensed for MND. Will you be pursuing lithium?

oops double post..see below :D
 
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Steve100

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Hi Caroline, sorry to hear about your illness, I hope everything works out as best as it can. Thanks for the kind wishes. :) Can you tell me where the MND clinic you will be using is? I asked the GP about an MND specialist, but she only knew of ones in London etc. I don't know if this is because Wales is a bit small to maintain a specialised clinic, or whether she is unaware. I asked her about Lithium too, but she said that she couln't prescribe it in the dosage required because it hasn't been licensed for MND. Will you be pursuing lithium?

My mothers symptoms came on in December 2006, but only a slight difficulty walking, which we thought was her arthritis. She could no longer climb the stairs in Feb 07, and began to fall during the summer. She is now in a bad way, just over a year later. It does seem to have moved particularly fast.

Do take care of yourself and best of luck to you and yours. Keep in touch :)

Steve
 

olly

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hi steve

:-Dthe mnd association will be able to recomend a mnd neuro for you,you may have to ask doc to refer you but should not take long.
mnd assoc number for cardiff and vale of glamorgan is 08453 751834 or email
[email protected]
hope this helps,all the best
caroline
 

Steve100

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Hi Caroline, thanks for the info. We do have a contact (not Angela) with the MNDA but she was the one who told us there is no specialist clinics in Wales.:-?

Thanks for finding out for me though, it may well be worth doublechecking :)

Best Wishes

Steve
 

olly

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ive just been on web and there is a mnd care centre at cardiff university hospital of wales the co ordinators e mail is [email protected]
the director/neuro is proff mark wiles. hope that helps more
 

Steve100

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Hi..It helps a lot, thank you very much indeed :).

I have tried googling for a clinic but I couldn't have been specific enough, so drew a blank.

Cheers, you're a star. :)

Steve
 

olly

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your very welcome thats what this forum is here to do,so we can help each other.
im going to a clinic in leeds,hopefully me and your mum can finally get the proper help.
please let me know how you get on,take care
caroline:-D
 

Steve100

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Wish you all the best of luck in Leeds. Keep me informed :)

I'll let you know if we can get lithium on prescription (they refused at first), can you let me know if you have better luck?

Thanks again, and take Care

Steve
 

Steve100

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Any opinions on this section in particular? Is it conclusive? Could it be anything else with these results? Thanks



She has had several investigations, including a nerve conduction test, which has shown essentially, normal motor conduction with sensory action potentials of –in the right finger three – of 11.6 and in the right ulnar of 0.5 with an absent right seural.

Emg has shown fibrillation potentials in right tibialis anterior, right quadriceps, right deltoid and right first dorsal interosseous

There were polyphasic units in right tibialis anterior and right quadriceps.
 

olly

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hi steve

i do not know alot about emg just that it is used to confirm als. nerve conduction test is usually normal but emg shows fassic potentials. all emg results seem to be right side are her symptoms all on right side? have you been able to see about the mnd care clinic?
caroline:)
 
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