The Aword

Hi Ang,

I can understand your concern, but I don't think that your sister's symptoms necessarily mean she is in an advanced stage of the condition. Some of her autonomic dysfunction could be related to unrelieved pain if she is not getting adequate analgesia (pain relief). If her pain etc. can be addressed, she may find the other symptoms settle down. She might find a low dose antidepressant (used for pain relief not depression) accomplishes some pain relief as well as combating some of the autonomic symptoms. Commonly we use amitriptyline or doxepin at 10-20mg at night, taken 2 hours before bedtime. It might help with sleep as well.
Another medication that may help with the nerve pain is either gabapentin or pregabalin; these are anticonvulsants, but again useful in neuropathic (nerve) pain.

Although arachnoiditis can't be cured, the symptoms can often be managed to make the overall quality of life better.

Hope this helps. Nil desperandum (never despair)!

Regards,

DocSarah

Oh DocSarah,

I guess it, I so often dispair. I am so afraid that the AA is in her entire spine, often complicating every part of her body. For a year now, life day to day is so challenging. I pray that she can have quality of life. Her quality of life is so important to me not to mention her 2 little girls (4 and 2)
One thing I had asked is, Can documented AA in lumbar area affect the hypothalamus and upper limbs (arm and hand, including stiffness and spasms not to mention pain, one side of the body) The centralized pain you mention is a bit confusing.
Thank sooo much.
Respectfully,
Ang

DocSarah,

I'm sorry I forgot to mention this in previous post.
DocSarah, for AA patients is this a common thing, sometimes I wonder that even though the doctors see the AA in lumbar area, I feel they are missing something in the cervical MRI
this often happens to my sister is this common:
She calls it a nerve crisis:

Severe pain in the back travels up and down spine then her entire left side, including leg up to her big toe and in the arm includes all fingers, everything gets stiff( unable to move at all) and pins and needles. She takes Actiq lollipop and about hour, hour and half later she regains some movement that slowly returns several hours later. Is this AA related in your expert opinion?

I am so lucky to have found you.
Best to you and your family,
Ang

Hi Ang,

it may well be what you describe your sister experiencing as 'nerve crisis' is just that, the body being on constant 'red alert' when there is unrelieved chronic pain, sometimes a mild harmless stimulus (can be something as simple as needing to go to the toilet) can precipitate a big reaction. It doesn't mean that AA has spread all over the body though.

Hope this helps,

DocSarah

Hi DocSarah
I wish you and your family very healthy and happy holiday. I know this time of year is very hectic for most and appreciate your time.
So is it safe to assume that the involvement of your upper limbs (as new symptoms and that her neck MRI showing herniation on C5,6) does not necessarily mean the AA is advancing. It is just that the symptoms are the same as in the legs. She looses the ability to move her arm at all. Is this a possible benign situation? Does this occur in most patients? I hope that the questions are not too repetive but I'm still confused. Most likely she got the AA from ESI's and from a lot ot literature that is a known culprit of progressing the AA to other parts of the body.
Please DocSarah, I'm just trying to find out if her symptoms are consistent with the AA diagnosis especially with the involvement of the arm (whole left side) and severe headaches.
As an aside, a pain doctor today suggested botusim shots to the muscles that get severe spasms. Is this advisable?
As always, ever grateful.
Best to you
Ang

Hi Ang,

the chances are that the upper body symptoms don't mean AA has spread, but it does all need checking out to exclude this or other problems in the neck area.
The headaches again are common in AA but should be checked out to exclude other causes.

Although AA causes a wide variety of symptoms, it is always vital to ensure no other cause is responsible for new or persistent symptoms.

I wish you and your family a lovely Xmas.

Regards,

DocSarah