[paperbag]

I fear I have meralgia paresthetica. I am wondering if anyone still reads this forum?
The pain started just last month, when I tried to do yoga. It is the worst pain I have ever felt. I am terrified of this becoming permanent. I am already on disability for other reasons. I am so scared right now.

I have already been through hell with misdiagnoses from doctors, and it's only been 1 month since I first developed this pain.

If anyone is still around, please post a reply. I'd love to speak with someone who also has meralgia paresthetica.

[Hopeless]

Originally Posted by paperbag

I fear I have meralgia paresthetica. I am wondering if anyone still reads this forum?
The pain started just last month, when I tried to do yoga. It is the worst pain I have ever felt. I am terrified of this becoming permanent. I am already on disability for other reasons. I am so scared right now.

I have already been through hell with misdiagnoses from doctors, and it's only been 1 month since I first developed this pain.

If anyone is still around, please post a reply. I'd love to speak with someone who also has meralgia paresthetica.

Hi paperbag,

There are a few of us still around but many MP sufferers come and go because for many it is a short term problem and they recover. That is the good news. I guess a lot depends upon the "cause" of the MP. MIne was due to damage of the LFCN during a surgical procedure and I have been dealing with it for about 35 years. If you wish to talk more about it, I would invite any questions you may have. A lot of us know the misery of being undiagnosed, mis-diagnosed, etc. on many neuro conditions so we can relate.

I am here for you any time you want to talk.

Hopeless

[paperbag]

Hi Hopeless,

Would it be ok with you if we exchanged emails? I would really like to have someone to talk to about MP. I am suffering a lot right now, because all of the doctors are on vacation due to the christmas/new year's holiday period. I would really appreciate advice from someone who has been through this.
If that's not ok, I can just keep posting to you here.

Originally Posted by Hopeless

Hi paperbag,

There are a few of us still around but many MP sufferers come and go because for many it is a short term problem and they recover. That is the good news. I guess a lot depends upon the "cause" of the MP. MIne was due to damage of the LFCN during a surgical procedure and I have been dealing with it for about 35 years. If you wish to talk more about it, I would invite any questions you may have. A lot of us know the misery of being undiagnosed, mis-diagnosed, etc. on many neuro conditions so we can relate.

I am here for you any time you want to talk.

Hopeless

[Hopeless]

Originally Posted by paperbag

Hi Hopeless,

Would it be ok with you if we exchanged emails? I would really like to have someone to talk to about MP. I am suffering a lot right now, because all of the doctors are on vacation due to the christmas/new year's holiday period. I would really appreciate advice from someone who has been through this.
If that's not ok, I can just keep posting to you here.

Any form of communication is fine with me. I sent you an email.

[DebbieK]

Originally Posted by Hopeless

Any form of communication is fine with me. I sent you an email.

Hello Hopeless and or other sufferers:
My 24 year old daughter has had a numbness tingling in her thigh since she was
8 years old.Into her teen years we tried over and over to get to the cause but it was not hurting and very off and on.Last year the pain started a nd so do sdf our search for help and a diagnosis.Went to as neurologist knew right away it was
M.P Glad to have a name for the condition but it's been a merry go round of nuerontin Lyric a Tegretol cortisone injection,pain patches and a nerve block in her lumbar region to try and reach the nerve that way. Neurologist says not a candidate for surgery as well as orthopaedic doctor say no point in surgery. Have read that in rare cases surgery can help. She is age 24 not over weight and not diabetic.SHe is so depressed from th he pain and feels defeated.please any help or adviCE.We feel alone and lost.Thank you, Debbie K

[Hopeless]

Originally Posted by DebbieK

Hello Hopeless and or other sufferers:
My 24 year old daughter has had a numbness tingling in her thigh since she was
8 years old.Into her teen years we tried over and over to get to the cause but it was not hurting and very off and on.Last year the pain started a nd so do sdf our search for help and a diagnosis.Went to as neurologist knew right away it was
M.P Glad to have a name for the condition but it's been a merry go round of nuerontin Lyric a Tegretol cortisone injection,pain patches and a nerve block in her lumbar region to try and reach the nerve that way. Neurologist says not a candidate for surgery as well as orthopaedic doctor say no point in surgery. Have read that in rare cases surgery can help. She is age 24 not over weight and not diabetic.SHe is so depressed from th he pain and feels defeated.please any help or adviCE.We feel alone and lost.Thank you, Debbie K

Hi Debbie K,

I am so sorry to hear what you and your daughter have been through in your quest to find answers. Yes, it is great to finally have a diagnosis and a name but you also need to find relief. I, too, began with it off and on, when I was in my twenties so I can certainly relate to what is going on in your daughter's life. (I am now in my sixties.) It took decades for me to get the "proper" diagnosis. As far as treatments once I finally got a diagnosis, I have been through the gambit. As far as surgery, I believe it should be a LAST resort. You mentioned various treatments attempted and I have a question regarding one of them. Exactly "where" was the cortisone injection done anatomically? Did they do an ultra-sound guided injection into the LFCN? There is also a procedure called radio-frequency ablation that can be done if injections into the LFCN do not help.

After many years of intermittent pain, my MP had progressed to constant pain at which time I was willing to try anything. In many cases, MP will resolve on its own as you have probably read in your research of the topic. But for the ones that it becomes a chronic lifelong problem, finding the right treatment is our only hope. It can become debilitating so I hope for your daughter's sake, she can find the proper help NOW.

Please keep us informed. We are here to listen and help in any way we can.

If other treatment modalities have not worked, she might want to consider having a direct nerve block into the LFCN. Good luck and looking forward to hearing from you again.

Hopeless

[WSprings]

Originally Posted by paperbag

I fear I have meralgia paresthetica. I am wondering if anyone still reads this forum?
The pain started just last month, when I tried to do yoga. It is the worst pain I have ever felt. I am terrified of this becoming permanent. I am already on disability for other reasons. I am so scared right now.

I have already been through hell with misdiagnoses from doctors, and it's only been 1 month since I first developed this pain.

If anyone is still around, please post a reply. I'd love to speak with someone who also has meralgia paresthetica.

WSprings

The best explanation is in Wikipedia.
My own experience of it started about 1 month ago. Few Doctors recognize it unless it is pointed out to them.
Do not where belts. The top of your hip must be free from any pressure. This does not cure it. but it certainly reduces the intensity. As I self diagnosed a short time ago, my hunt for permanent relief is just starting.
Hang in, if I find out anything significant, I'll let you know.

[DJ928]

Hi I have Meralgia Paresthetica
I have been frustrated for years now I have been to countless doctors and specialists and it seemed every time I found or thought I was getting close to finding out what it was and how to treat it almost every time I had to start at the beginning again. I was so sick and tired of everyone telling me that it was the slightly herniated disk in my lower spine. I found a specialist that said it was not my disk and still I was searching. My PCP had put me on Lyrica and it has been helpful but after all this time of using drugs I am now experiencing side effects similar to E.D. My PCP finally sent me to a Neurologist and he diagnosed me with Meralgia Paresthetica and again I thought I am getting close to a solution. He even mentioned a surgical treatment that may fix it. Months went by and I hadn't heard a word keep in mind I am not on disability and working at minimum 40 hours a week. So I called him back and asked about the surgery and guess what he told me... Well there is no surgeon that will want to just go in and attempt to fix it even with a diagnosis lets have a look at a MRI of your lower back. I wanted to shoot him! So I go down and get yet another MRI and send it to him months go by, finally a call from him and he says it is not your lower back. So I ask again about the surgery he says that there is no surgeon that will want to do the surgery because the nerve is so small and difficult to locate. So I am now back at square one. I have been chasing a cure for at least 8 years now and yet to no avail. I am planning on asking my doctor about disability and seeing where it goes from there. I will also be investigating the corticosteroid injection into the groin it is said to help. Of course lucky me I have it on both sides so that means two injections in the groin I only weigh 140 lbs and my pants are so loose they almost fall off so I am wondering what caused this condition. Any way I hope at least some of this information helps someone out there.

Originally Posted by paperbag

I fear I have meralgia paresthetica. I am wondering if anyone still reads this forum?
The pain started just last month, when I tried to do yoga. It is the worst pain I have ever felt. I am terrified of this becoming permanent. I am already on disability for other reasons. I am so scared right now.

I have already been through hell with misdiagnoses from doctors, and it's only been 1 month since I first developed this pain.

If anyone is still around, please post a reply. I'd love to speak with someone who also has meralgia paresthetica.

[Hopeless]

Hi DJ928,

Welcome to NeuroTalk. I know exactly how you feel. I spent years going through very similar situations. At one point, I was sent to an orthopedic doctor that wanted to operate on my lumbar spine and I declined as I knew THAT was not the source of my leg pain. Anatomy 101 was enough to know that. It was not radiculopathy. (I do have spinal issues, both thoracic and lumbar but they have nothing to do with the MP.)

So you have bilateral MP? Have you tried any conservative treatments other than taking Lyrica? Physical therapy? Lidoderm pain patches? TENS unit? The injections are painless and very beneficial to some with MP.

Another option is radio frequency ablation of the LFCN, lateral femoral cutaneous nerve. Surgery is a last resort.

You may want to find a good pain mgt. clinic with a board certified anesthesiologist for treatment.

Don't give up. Help is out there. It may be elusive but I finally found help after decades. After 35 years, I found my pain mgt. doc.

And if you do get the injections, don't give up if they do not work on the first or second try. Sometimes it takes several before you will get relief. If the compression remains, so does the MP, but the symptoms can be reduced. It is not a one shot cure all by any means for someone that has an 8 year duration. The only time I have ever heard of a first and only injection resulting in no return of MP symptoms has been in acute cases of short duration.

The trick is to find the right doctor. Don't give up.

[sinisterporpoise]

DebbieK, how far are you from Terre Haute? I'm not entirely sure, but I believe the Christian Hand center deals with chronic pain issues. (Of course, I've never been sure if Christian Hand is the guy's name or if it's a Christian center dealing with hand issues.)