What would YOU do?

My sister has had an undiagnosed condition for three years now... twitching in her legs daily, muscle pain like you just ran 1000 miles, and leg fatigue. She has seen neurologists, physical therapy, rhematoid doctors and her PCP. Multiple MRIs and blood work. All negative. She's had some genetic testing...that was negative. She has wanted to end her life because the symptoms are there EVERY day, all day. She tried to do a study, but was rejected as they could only accept so many participants. She's at a dead end, what would you do? She does have another appointment with a sixth neurologist, but that may lead to no answer as well. Any ideas?

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Threepio

Any ideas?

My spouse went through the same thing for a YEAR...(with the same symptoms).... FINALLY a young intern (Hip/thigh doctor) listened to her complaints and told her "You have just described what happens when you have a pinched nerve in your spine". So he ordered another MRI (4th one this past year). We have spent 1000's on co-pays this past year.... and when the MRI came back.... a spine doctor at the same institute that the young intern works at told my wife "The MRI shows a pinched nerve in your spine."

She has seen like 8 doctor "specialists" for her thigh/leg pain and numbness and a doctor in training sees her for 5 minutes and tells her exactly what the problem is.

SMH: I feel like the past year has been an exercise in "Finding our wallet" and the medical professionals certainly have done that....

cherokeepatti · 61-69, F

@Threepio for some reason regular doctors do not diagnose such things very well. I had better results with a chiroractor than a MD with my back. MD’s want to sit down and write out prescriptions for drugs. Also sometimes there is a parasite lodged near the spine that can cause all kinds of continuous back pain and the doctors can’t seem to figure it out but a chiropractor can. Happened to man in my city, he went to over 2 dozen doctors with no relief and them saying they couldn’t find anything wrong. The chiropractor ran a test for parasites and gave 2 doses of meds to kill it out and the pain was gone within hours of the second dose.

Coralmist · 41-45, F

@Threepio Wow, what an experience...Ill tell my sister. To think a doc in training,!

BlueVeins · 22-25

If the neurologists arent finding anything, maybe see a rheumatologist? The symptoms you describe sound neurological but it's worth a shot I guess.

cherokeepatti · 61-69, F

have they ruled out neuropathy? I have read that some with that have been treated with alpha-lipoic acid and had good results. It’s a fatty acid and a nutrient.

Coralmist · 41-45, F

@cherokeepatti They did rule out neuropathy but heck at this point maybe they can treat her with a med they use for that..the symptoms are similar. However she doesnt have the typical burning needles in feet or hands.

cherokeepatti · 61-69, F

@Coralmist maybe the nutrients is what she needs. Sometimes they miss a diagnosis until the condition gets full-blown. They did that with my daughter’s thyroid condition. They tested her and she kept having symptoms that would get treated individually and then I asked for her thyroid to be retested and it made the doctor mad. I told him it was time to get it done again. I got home school forms that he had to fill out so backed him into a corner where he would have to do testing. Oh he was mad about it, left us sitting in a room for over an hour by ourselves after I handed him the papers. He tried to tell me she could have parasites or whatever and had her tested for that and some other things too. Tests came back that she had Hashimoto’s thyroiditis….sent her to a pediatric specialist and we never had to deal with his ass again.

gdon39 · 46-50, M

I’m suffering a lot of that too. Three years and counting.

I’m waiting on my Spinal Cord Stimulator (SCS) to be implanted. Look it up. It may only provide 40% relief but when you can’t sleep, eat, work a 40% reduction sounds incredible to me.

They will rum wires up and down her spinal cord and the desired outcome is to block pain and the pain that is interfering with other signals in her body May be able to resume connections to the brain.

I hope that helps and feel free to message me if you want to talk more about it

MrBrownstone · 46-50, M

Cannabis

RadiantRuby

I'm so sorry Coral
It's probably expensive but if the local doctors are not finding the condition, maybe she can go to another state. Does she live in a big city?

Coralmist · 41-45, F

@RadiantRuby We are right near Boston but two major hospitals dont take her insurance...ugh.

GovanDUNNY · M

Leg spasms are a sign of arthritis ,I would take her swimming a few times a week Michelle

InOtterWords · F

Are you seriously asking SW for medical advice?

This is worse than googling stuff

Coralmist · 41-45, F

@InOtterWords We are at a loss for any answers..you ask anywhere that someone might have an opinion..you never know if they've gone through it.

SW-User

Tell her to STOP drinking coffee

My Sis had the same.

Stopped when she quit coffee

Coralmist · 41-45, F

@SW-User wow She had the symptoms of horrible leg pain, stiffness, twitches 24/7? I drink coffee and dont have my sisters condition...🤔

SW-User

@Coralmist Because caffeine is a stimulant, it can interfere with sleep if it’s consumed too close to bedtime. It’s long been on the list of restless legs triggers, but Dr. Salas says recent research shows it may not be that big of a problem. In fact, she says, it may be beneficial in some people. Try cutting out coffee, tea, colas, sports drinks, and even chocolate to see if your symptoms improve or worsen.

Clinical study of 362 patients with restless legs syndrome and associated anxious-depressed and other clinical states seems to indicate that caffeine is the major etiological factor in the causation of the restless legs syndrome. Anxiety, while modifying the subjective experience of the dysphoric sensation of restless legs, is not a causative factor. Caffeine is responsible for the increased nervous system arousal as well as for the direct peripheral contractile effect on the striated muscle. This arousal is often reflected psychologically in anxiety and sometimes depressive manifestations, insomnia, heightened proprioceptive awareness and physiologically in the toxic sensory experience of restless legs associated with increased neuromuscular reactivity which may include myoclonus and myokomia.

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