hand pain, edema and ALS

[lizziech]

For almost a yr a close 50+ year old female family member has had trouble with ONE arm and hand-- significant pain, limited range of motion without pain, weakness, atrophy, drawn up fingers in claw shape, prominent edema in the hand even after waking. (ie, not just when hand is hanging down for long periods) If she raised that arm with her other hand and let go, it would drop. She's been to many doctors of different types. She was diagnosed with trigger fingers, given steriod injections. Diagnosed with an ulnar entrapment problem, given two stellate nerve blocks with no effect, diagnosed with frozen shoulder, had PT which caused her great pain (bad therapist, I think) and then had shoulder surgery. Has had some slight improvement recently (for no apparent reason--didn't seem related to any particular treatment) but now has been diagosed by a general neurologist with ALS based on only (so far as I can tell) "nerve tests," I'm not sure what those were but there were two different types of tests. (It's my understanding nerve test results can be suggestive of ALS but not definitive.) She did have some falls that seemed related to dizziness caused by Lyrica which had also been prescribed but then discontinued awhile back. A spinal tap was tried by an earlier doctor but the dr could not get fluid due to her spinal arthritis and perhaps due to her extra weight. She is diabetic (for about 15 yrs) and her A1C is OK but not great. I want her to get another medical opinion re: ALS but my suggestion may not be welcome. (I do recognize it is her life but I also think she and her partner are not thinking clearly now which is understandable) The neurologist apparently told her to quit her fulltime job (which pays for her health insurance and is a desk job she is very able to do right now) and enjoy the very little time she has left.I think the dr may also have said she should file for disability but that's not so easy to get in the state we live in. (She does not have private disability insurance) I would think it would be especially hard for her to get disability if the only symptom she has now is the problem with one arm (even with an ALS dx)  I want to help her but I feel helpless. Obviously she needs to make decisions if she does have ALS but if she doesn't have it, decisions she makes may lead to a worse outcome. (Enjoy life? Quit your job? Eat whatever because there's no need to worry about diabetes anymore?)  

[lizziech]

Thank you so much! I appreciate your help.

[Dr. Kokil Mathur]

Hi!
I can understand your concerns about this family member. However, they need to take a decision and test further for ALS. You are right, nerve conduction studies are not conclusive. To confirm that a doctor has to find signs of both upper (muscle weakness, decreased motor control, inability to perform fine movements, increased spinal reflexes, and positive Babinski sign—great toe going up) and lower motor (muscle weakness, abnormal EMG etc) neuron signs in one limb. Symptoms of many of these diseases do mimic ALS. ALS like symptoms can be due to fibromyalgia, chronic fatigue syndrome, severe anemia, spinal nerve compression high up in the cervical spine, ankylosing spondylitis, osteoarthritic changes of the vertebrae, calcium deficiency, low Vit D, electrolyte disturbance, peripheral neuropathy due to diabetes or hypothyroidism or due to bad posture. Lyme and lupus are the other possibilities.
Electromyography (EMG), nerve conduction velocity (NCV), muscle biopsy, etc are done to confirm diagnosis or rule out ALS. Do discuss this with your family member. Take care!

The medical advice given should not be considered a substitute for medical care provided by a doctor who can examine you. The advice may not be completely correct for you as the doctor cannot examine you and does not know your complete medical history. Hence this reply to your post should only be considered as a guiding line and you must consult your doctor at the earliest for your medical problem.