Recent problems

[keane]

I have recently found this forum and am impressed by the knowledge so many seem to have. Sorry for the long background below, but I would appreciate any input.

I’ve recently turned 43, and for almost 10 years, I’ve been seeing a Rheumatologist for anklyosing spondylitis, a degenerative joint disease that causes breakdown of the back and hip joints, with fusion. I’ve experienced fusion of several vertebrae, my sternum, and take a wide array of pain medication, but I still have been able to maintain an active life and a mid-level management job in a large corporation.

A few months ago, I started having painful muscle cramps in both feet, and occasionally my hands. My wife, a nurse, suggested taking calcium, potassium and other vitamins, which seemed to help for a while.

About 2 months ago, I began to notice that my left hand and wrist became increasingly very clumsy. It has now become extremely weak and the weakness seems to be slowly moving up the arm into my bicep. There is no numbness. Currently, I can barely hold a glass of water, and buttons are out of the question. Even simple activities cause a torn muscle type of pain afterwards.

Just before the holidays, cramps re-appeared in the other extremities, along with growing weakness. Also, I end each work day feeling totally wiped out, and I’ve had to temporarily give up on the dangerous wood shop hobby, along with many activities.

In the past, inflammation around my vertebrae have caused temporary numbness and tingling in the extremities, so I asked to be referred to a Neurosurgeon. Both my Rheumatologist and Internist feel that the lack of numbness/tingling indicates that “something else” is going on, so I’ve been referred to a Neurologist. I’ve also had problems recently with swallowing, and choking, so the Internist mentioned that ALS will need to be ruled out.

Living with a degenerative joint disease has taught me that it does no good to fret about what might be, and I know that it will take a while to find out what is going on, but I have a couple of questions that would definitely ease my mind:

If a patient is experiencing objective muscle weakness (such as my left hand/wrist), will tests such as the EMG definitively rule out diseases like ALS? On this board I’ve seen cases where patients went through multiple tests. I’d definitely like to rule out more serious health problems as quickly as possible. My wife, being a hospice nurse, seemed terrified when I told her the extent of the weakness and that it is spreading.

What other types of disorders do neurologists usually look for with symptoms such as these?

Thanks for your replies.

 

[rose]

Keane,

I just wanted to welcome you to the forum. I'm not that knowledgeable about the various conditions your symptoms might point to, but there are other members here that should be able to give you good advise.

The EMG would only reveal if you have lower motor neuron problems, so its only part of the picture, but, a good neurologist can tell a lot just by the exam. Try to get a referral to a university medical center if possible to start out with.

I've read how painful the anklyosing spondylitis is, so you've already had to learn to cope with much in your health.

Good luck to you, I hope you get some answers soon that will put your wife's fears to rest.
take care,

 

[laurel]

Hi Keane,
The neurologist will do a complete neurological exam checking your reflexes and strength, and will look for any abnormal responses. He likely will do an EMG and nerve conduction tests, blood work, a lumbar puncture, and and possibly MRI's. He will do a complete history asking you questions about your symptoms and asking if you have sensory symptoms. He will likely be looking at the most common things first such as nerve compressions such as Carpal Tunnel, and rule out things like MS, vasculitis, benign fasciculations, CIDP, and of course ALS. My husband has CIDP which compared to ALS is a good thing.

I am a retired nurse and like your wife lived in a terrified state during my husband's diagnosing saga. His symptoms were atrophy of right hand and right forearm, drop foot of the right foot, some muscle cramping, no sensory symptoms, generalized weakness, foggy thinking and forgetfulness, some word searching. He could not hold a cup or utensils with his right hand. He first noticed weakness of his grip when using instruments in the cockpit (he is now a retired airline pilot) I'm no pro concerning the EMG and nerve conduction studies and their interpretation, but in the hands of skilled technicians they yield lots of useful info. My husband was misdiagnosed with Carpal Tunnel by the first neuro. who used antiquated equipment and he did not test all four limbs--diagnosed Carpal Tunnel and then when the surgery failed queried ALS. The neuromuscular disease centre where he was diagnosed had state of the art equipment, tested all four limbs and found abnormalities in all limbs. But the neurologist would offer no diagnosis until after he had a trial of IVIG. His CIDP is a very unusual variant that does not fit many of the usual CIDP criteria. But if he gone to the neuromuscular disease unit in the beginning he would have not wound up with the irreversable muscle wasting that ensued by misdiagnosis and lack of treatment for 2 years. My advise is to ensure that you go to a neuromuscular disease unit versus just a private neurologist. Good luck and if I can answer any more questions please ask them. Wright is our in house EMG specialist so perhaps you can direct a posting to him with specific questions about that area or search for past EMG postings. There is lots of info to be found if you use the search feature.
Laurel

 

[keane]

Thanks

Thanks for the response and helpful guidance. I didn't wan't to go into exhaustive detail, but I have gone through several episodes of nerve compression in the past as a result of bony fusion of the vertebrae, and I usually go to an area world-renowned neurosurgeon who has treated successfully. That's why I asked to be referred to him. I have to agree with the rhematologist that these symptoms are quite different. In the past, I had numbness, tingling, then weakness, usually localized. This started from the left hand with extreme weakness, atrophy. As it spreads, weakness is followed by twitches (never had these before). Cramps and weakness are now more severe in the right foot.
Interestingly, about 7 years ago, I began to have a lot of muscle pain, and a subjective feeling of weakness in my lower legs, which began to progress upwards. I went to a research hospital for full neuromuscular workup. All was clean except some vague cellular damage and abnormal neuromuscular resonses (Babinski?, I believe). On my own, I researched Lipitor and quit taking it. All the problems disappeared. The neuro seemed sure that the problems would resurface one day.