I am desperately seeking any advice, October 2019 I had bad back and thigh pain on my right side after working too hard on my business sewing baby clothes I sew using my right leg with a pedal, I asked my husband to massage my leg as the pain was so excruciating and within a minute of him massaging it quite vigorously my feet had pins and needles and within five minutes I couldn’t feel my legs, my right one was definitely the worst. I couldn’t feel my bottom, legs, ankles and feet.

I went in and out of hospital over 5 days and had multiple MRIs of my lower back, neck and brain. and blood tests and they had no idea what was causing it. In February I saw a neurologist who sent me for a CT scan with contrast dye and again nothing showed of my pelvis and concluded that she thought it was inflammatory lumbosacral Plexopathy .

I have payed to see an osteopath and had physiotherapy and nothing really helped. I can now feel my left leg and my symptoms are as follows

•Right outer and front thigh numb
•Right outer thigh hypersensitive to touch and heat
•Right foot feels cold constantly
•Right outer thigh extreme pain, dull stabbing pain
•Right calf and foot patchy numbness
•Symptoms get worse if I stand in one place
•Pain gets worse if I walk to far
•My right knee feels full of water and if I stand in one place for too long I get a red hot knee with a red circle about 2 inches wide and immediately eases if I elevate my legs
•Numbness also gets worse if I lay on my right leg

I am at a total loss as to what to do, I am not convinced it is lumbosacral Plexopathy and feel like it’s a easy diagnosis for them to make because there is no simple test. And no point has anyone assessed my leg or taken a scan so I’m hesitant to believe it.

Does anyone have similar symptoms or have any advice please

Welcome Holziab. Hope you find an answer.

Kitt

Well, I have a almost whole right side from waist down with numbness and just "dead" but this issue is from hip replacement 10 yrs ago. I'm 82 and live with this now 10 yrs.

Hope you get some help.

Hi Holziab

Welcome to NeuroTalk .

This information about lumbosacral plexopathy might help you.

Lumbosacral plexopathy and sciatic neuropathy: differential diagnosis and treatment | PM&R KnowledgeNow

Best wishes.

Welcome, Holziab,

Your condition is clearly limiting you considerably and must be difficult to put up with. I wonder if it could be connected with the work you mention doing, involving your right leg and a pedal.

Have you tried a different position, or maybe a different type of chair to sit in? Is there a way you could try resting from that right-leg pedalling for a while, to see if your symptoms go away?

So often back and leg problems can be helped by changing the way we do something routinely.

It sounds to me as if putting a name on your disorder hasn't helped you to find a way to end the symptoms. Maybe it's time to try first one change and then another until you figure out what helps and what doesn't.

It's just my take on it--I've had quite a few problems with sciatica over the years (similar to your symptoms) and have noticed how the position I'm in for sitting, lying down, etc., really matters.

Thank you for the reply, I haven’t been able to sew since this happened I had to shut my business, since all the numbness started I have been unable to drive and do the most basic of tasks without my crutches I even struggle to shower unaided.

I have tried sleeping and sitting in different positions and really been working on my posture, I was thinking of seeing a chiropractor as I think now my body is overcompensating because of my bad leg

Many people have good luck with chiropractors. I've never been to one but I understand that they can be helpful.

I'd find another physical therapist myself. If you have a primary care doctor, you could go to one recommended by that doctor. You may already have gone that route since you mention having physiotherapy?

If that physiotherapist was recommended by your primary care doctor, why not tell your PCP that you'd like a different referral because this one didn't help?

I've been for several courses (usually 8 sessions) of physical therapy over the years, usually in connection with sciatic pain that was sometimes as severe as what you're putting up with, and usually the therapy didn't just involve exercise routines. Ultrasound and electrostim were used too, and they seemed to help.

There are good physical therapists and then there are some mediocre ones. I've been lucky in having mostly good ones. I hope you'll get lucky too because the kind of pain and limitations you describe are miserable.

OP: You mention osteopath and I had the good fortune to have a wonderful D.O. work on my body for many years....had a lot of chiro work too.

And doing repetitive things with our bodies can do damage...reminds me of a friend who has been hit with hip osteoarthritis and she believes NOW that using a gear shift car for years stressed that part of her body.

Yes , yes , yes... Maybe even low level laser therapy..my chiro used many of those treatments mentioned and the LLLT.. and I got Ultrasound & IFC stim devices online (amazon under 100.00 each) and used them at home too. I also use far infrared heating pad... treats deeper than regular ones.

Don't give up, keep trying and seeking out better skilled & advanced PTs or chiropractors that uses a mix of therapies.

Bore da, good morning Holziab,

What a terrible thing to happen to you. All these awful, symptoms and to lose your own self made business becuase you can't work. It's heartbreaking. I note that you have seen a neurologist but are unhappy with the tentative diagnosis. I note you are from Wales.

The only suggestion I can make is to contact the Senedd, The Welsh Parliament. Recruit a local politician to help you. Explain your position to your local member ( which you can find via the link below) Members of the Senedd are on the whole decent people who don't actually do a lot. They would jump at the chance to help someone like you by writing on your behalf to your neurologist for example. Complaceny is endemic in the Welsh NHS and no consultant will enjoy receiving a letter from a politician. But I can guarantee you and your condition will be taken more seriously. Demand the help you feel you need. For example, another appointment, a second opinion, or further tests or appropriate NHS physical therapy.

In addition you are probably a Sole Trader, there are grants and financial help available for Welsh businesses. Again the Senedd is the place to contact.

Contacting the Senedd

If you find the help you get from your Senedd member is inadequate, write to another member. ( All can be done via email)

You can, in addition email your local London Parliament MP. See link below

Contact an MP or member of the Lords - UK Parliament


Pob hwyl cariad,

Atty