Posted on 12/06/2019 11:31:15 PM PST by Oshkalaboomboom
In early September of this year my wife starting having problems with her feet going numb. Because she had no feeling in her feet she couldn't maintain her balance and it's become harder and harder to walk. The numbness has spread and now she can't feel her legs and even has occasional tightness in her chest. When we have to do any walking outside she now sits in a wheelchair and I push her around.
She has been getting a lot of tests done and the doctors believe it is now either Sarcoidosis or Lymphoma. She is going in for a surgical biopsy next week, which will involve a stay in the hospital of 4 days.
I'm grateful she is getting treatment but I can't get my head around how a problem in the lungs can make your feet numb. Are there any FReepers who have had a family member in a similar situation so they can explain it to me?
Another problem is that from what I've read about Lymphoma it causes a breakdown of the immune system but my wife hasn't had any health problems besides this numbness, not even a case of the sniffles. I just don't get it.
First, I will say prayers and I will tell others I know to say prayers.
Second, maybe it’s an unrelated ailment? Sounds crazy but it’s possible.
Either way Prayers will be coming and please keep us updated.
Your docs should have explained this to you. Sarcoidosis can include neurological issues, and numb extremities are often a first sign.
https://www.stopsarcoidosis.org/what-is-sarcoidosis/symptoms/
My husband and I are following a very low lectin diet. It’s not easy but the rewards are quick and substantial. If you want help with this, let me know.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1417731/
Most common types of this come on slowly (diabetes for example). But you describe sounds like an aggressive cause, probably from something affecting the immune system...that is why they will do a biopsy, to see if it is lymphoma or sarcoidosis.
Once they find out the cause, they will know how to treat it...
But treatment only stops the cause, then you have to wait for the nerves to recover. This may take months and may not be complete.
So be patient...and if the doctors aren't certain, ask for a referral to a bigger hospital that has a specialty clinic in the disease.
I have only seen one case like your wife and we had to refer him out of state to get diagnosed. The treatment took time but after 2 years he was our of his wheelchair.
You are in my prayers.
Ask the doc or nurse to explain it to you
Do not give medical sdvice.
Could be peripheral neuropathy caused by gullain-barre or CIDP. No fun. I’m in my 20th year.
My best to you both.
Hmmm. Weird one. I’m to the point of using a walking stick and my doc wants me to use a walker, becuse I’m always in danger of hitting the ground like a duckpin (four times in 15 months so far, with two fractures and two torn muscles to show for it). I’ve got hardcore neuropathy in both feet and lower legs due to diabetes and neural damage from infections, but that sort of numbness is usually confined to below the knees. That chest issue is throwing me though. Has she had an upper GI ultrasound yet? Could be stress-related ERD. I had a bout that put me in the ER and they thought it was a coronary, same symptoms. Tightness in the chest. Erosive reflux can mimic a heart issue, it isn’t your generic heartburn. It’s far worse. And did they rule out a nerve in her lower back? She could have done something as innocuous as twist the wrong way, and is binding a nerve. That would get worse over time if it’s continually aggravated. They’d probably have to do a little surgery to relieve the pressure if PT doesn’t help. Good luck to her and keep us posted.
It started out with a lumbar puncture and suspected inflammation of the spine. They prescribed steroids and her condition seemed to improve. They have now stopped the steroids as they focus on her lungs, and her legs have gotten worse. Then they knocked her out and stuck a tube down her throat and into her lung to take a sample. That wasn’t conclusive enough so now they are going in, either through her side or her chest we don’t know where yet. She’s had lumbar punctures, brain scans and MRIs. We took reports of everything they have done so far to our GP and, after a thorough read through, came to the conclusion that it’s complicated. They are trying their best but it looks like a fishing expedition.
Sounds like peripheral neuropathy. My 87-year old mom has had it for the last 10 years or so. Numb feet and lower legs. Said she feels like she’s always wearing socks. Balancing / walking very difficult. Sometimes shooting pain.
The cause of PN is often diabetes, but not always. Could also be the result of physical trauma or disease. My mom had both shoulder (rotator cuff) surgery and shingles right before the PN came on. Either of them could’ve been the cause. Or a combo. (She doesn’t have diabetes). In some people, there’s no identifiable cause.
I didn’t. And btw, shove off.
I will say a prayer for you.
The body is a system. When I went for my first set of surgeries long ago for something, I was amazed that afterwards, I could clearly read road signs for the interstates. I realized then that my body had been dragging all of my systems to fight what I had, including my sight.
Maybe there’s something similar going on with your situation. I’m no physician, so please just take this as one person’s commentary.
Had a friend recently lose sensation in feet but maybe more rapid onset. About a week or two before he lost all sensation. Prob was bad discs in neck, which surprised me because I thought it would be lower in spine. They did a cervical fusion to correct.
Infections in spinal cord can also do this.
Disc thing easily detectable with MRI though. May have ruled that out already.
I might have the wrong person but don’t you now live in Spain?
One point on the lymphoma angle - there is a new type of polio going around which usually only affects kids but with a reduced immune system an adult could pick it up maybe. Would explain the breathing difficulty too.
My girl friend is a Navy vet so she gets her medical care from the VA. She was diagnosed with MS long ago.
More recently she’s been diagnosed with RA, Sjogrens and the latest, adrenal fatigue. All are autoimmune diseases.
With her medical background; DVM, PhD & MSFNP, she’s often more up to speed than her medical providers. It’s a conversation of equals. That’s helped move treatment along.
The VA does research. One report from the Portland VA was a study that found Alpha Lipoic acid helped those with neuropathy. She recently started taking R Lipoic acid for her neuropathy.
The myelin won’t regenerate overnight. She’s already experienced some beneficial changes.
Ongoing research is finding correlations with the gut microbiota and autoimmune disease. She thinks all autoimmune issues have the same source, the gut, and differ in effect due to genetics and environment.
That’s where diet and possibly probiotics and prebiotics may be of benefit.
The knowledgeable VA doctors we’ve talked to are aware of the research into the gut microbiota. It’s being viewed as the next big advance in medical knowledge.
Sure you did.
You know nothing about this man’s wife’s situation. Recommending anything is pointless
Let the medical staff answer his questions. He needs to continue to ask until he’s satisfied
We can offer support and prayers
Agreed. Try investigating CIDP.
Very frustrating while doctors had no idea.
Pressure on the spine can cause numbness of the feet and legs.
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