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IainC

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Oct 25, 2013
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Learn about ALS
Country
UK
State
Kent
City
Margate
Hi,

My wife is experiencing a number of the symptoms associated with ALS.

- She has a weak right hand (she finds it difficult to hold tweezers and scissors)
- She has difficulty walking as her right foot drops (both do this, but the left doesn't seem to be an issue)
- She says she has twitches all over her body - particularly her back. These don't seem to happen all the time and usually after she has been to the physio
- The physio has noticed wasting in her right shoulder muscle and her right hand (we can see the right hand, but the shoulder is obvious)
- Today she told me her lip feels numb a bit like when you visit the dentist and she sometimes has to think about how she says things. I haven't noticed any difference in her speah though.

She also has Reynards syndrome and we have noticed her spine and vertebrae in her neck are pronounced (which we hadn't seen before).

We visited a neurologist (a very good one as it happens). He did a lot of tests and said her reflexes were all normal and symetrical, her strength was OK and symetrical (although in the last week we think there is a difference) and her MRI on her brain was normal (she hasn't had one on her spine. The Bablinski Effect was not present. She could walk heel to toe, but not on tip toes or her heels.

He suggested she return to the physio as he didn't think the condition was neurological...the physio suggested we go back again as he thinks it is. We are trying to do this at the moment.

She is now playing the piano, so there is some dexterity in her hands.

The symptoms probably started in June / July but were so subtle we didn't notice until September.

I guess I am wondering if I am putting too much emphasis on the normal and symetrical reflexes and the lack of the Bablinski sign - the neurologist tested just about every one.
 
Does she have secondary Raynaud's syndrome? I found this and maybe it should be looked into

Secondary Raynaud's is linked to diseases and conditions that directly damage the arteries. The disorder also is linked to diseases and conditions that damage the nerves that control the arteries in the hands and feet.

Scleroderma (skler-o-DER-ma) and lupus are two examples of conditions that can cause Raynaud's. About 9 out of 10 people who have scleroderma have Raynaud's. About 1 out of 3 people who has lupus has Raynaud's.

Other examples of diseases and conditions that can cause Raynaud's include:
•Rheumatoid (RU-ma-toyd) arthritis
•Atherosclerosis (ath-er-o-skler-O-sis)
•Blood disorders such as cryoglobulinemia (KRI-o-GLOB-yu-li-NE-me-ah) and polycythemia (POL-e-si-THE-me-ah)
•Sjögren's (SHOW-gren's) syndrome, dermatomyositis (DER-ma-to-mi-o-SI-tis), and polymyositis (POL-e-mi-o-SI-tis)
•Buerger's disease

Thyroid problems and pulmonary hypertension also may cause Raynaud's.


She may have nerve damage from it. Or another underlying condition. Going back to the dr is the only way you can find out.
 
The Raynauds was probably first as she's had it since before we met almost 20 years ago.

The neurologist was very sure that this wasn't neurological....although he has agreed to see us on 4th November. However a lot of this was based on the reflex responses and lack of Bablinski sign. The physio is equally sure it is neurological based on the muscle wastage. I guess we may know more on the 4th...until then it's clutching at straws to reduce the worry.
 
Well worry will get you nowhere. It will makes the sensations worse. All you can do is wait for the dr apt and relax, enjoy yourselves. Do something fun to get your mind pointed in another direction. I know you won't forget about what is going on but something distracting will help.
 
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