Interested in an MP discussion group?
 

I'm brand new to this site, but unfortunately I have many years of experience with MP. And it's getting worse. I've been looking for a support group (one where you can talk with each other) but haven't found anything other than this site. I'd like to start one, ideally in the San Francisco Bay Area. Please let me know if you're interested. I'm also open to the idea of using Skype or something like it, which would remove any geographic limitations. I'm just not familiar with how best to approach that, so would welcome suggestions. This site is fine, but there's nothing like TALKING, ideally face to face, with people who suffer from a common condition. I look forward to hearing from other MP sufferers. It's a nasty condition, and my hope is that we can learn from one another how best to live with it.

Hello
 

I am also interested in joining a support group. I have been trying to figure out what has been causing my pain for almost two years now. I had my second appt with neurologist yesterday and he says he believes I have Meralgia Paresthetica. I am hoping to get an idea of treatments I should start doing that have worked for other people. I am wondering if people have pain to the the extent that I do. I have pain every second of the day that is a level 8-9 on a scale of 1-10. My pain is a severe stabbing, pin and needles, shooting pain that radiates up and down my left leg. Most of my pain is concentrated in the area where my femur is located. It often feels like that area is tightening and locking up. My leg often goes out while walking. I have been on Gabapentin 600 mg day for two months and have showed little improvement and yesterday he upped the dose to 900 mg a day. I'm taking ibuprofen for pain. Im hoping to find that it is possible to be cured from this.

May not be MP
 

Dear HoneyBun,

You mentioned something that makes me think you may not be suffering from MP, OR maybe you have MP PLUS something else going on simultaneously.

MP is caused by damage to the LFCN. (Lateral femoral cutaneous nerve) It is a purely sensory nerve and does NOT involve any muscles. When you said My leg often goes out while walking. a flag immediately went up in my mind because MP does not affect muscle.

shooting pain that radiates up and down my left leg. Below the knee? If so, it is not MP. MP is confined to the thigh ONLY.

It sounds like you may have a problem with the femoral nerve, not the LFCN.

MP alone is limited to cutaneous (skin) area of the thigh only. I have had MP for about 35 years. Your symptoms sound like you have more than MP.

I hope you investigate your situation more to be sure you have a proper diagnosis.

I agree... MP is sensory only.

Any muscle pain, or knee issues, or pain in the back of the leg, is something else. It is possible to have more than one thing going on, especially if you have some lumbar problem.

Dear JackyP,

I understand your desire to be able to "talk" with other MP sufferers. Personally, I do not have the technology to "talk" to anyone via computer. I do not Skype, or anything of that nature. I am lucky that I email and use this forum. I am not very computer savvy with all the advances that have been made since my days of DOS. (Can you tell by that statement that I am OLD?) I don't facebook, tweet, or use any social media either.

If you want to converse by typing on this forum, I will be happy to do so. Beyond that, I am unable to participate in your support group. Sorry.

I do like your idea, it is just not something I can do. Best wishes to you and I hope you can find the support you desire.

Hello Hopeless
 

Thank you for responding. I think it is possible I may have MP + Complex Regional Pain Syndrome, the doctor did say that is a possibility, but he does feel like I have MP for sure. He said it is possible for the pain from femoral nerve to cause a radiating feeling in my shin area as well in thigh and knee. I don't have a radiating feeling in my shin to often though, its mostly in groin area. I have found that one of the symptoms with MP is your leg will jerk/twitch and that could be what is causing my leg to go out while walking. He never mentioned anything about a LFCN, he just spoke about the femoral nerve and he said he believes it is whats causing me pain. I am wondering what is the difference between the LFCN and the femoral nerve, I will have to do some research on that. Thank you so much, your advice helps a lot. It is very important I do get a proper diagnosis.


I have a 6.5 in long x 1 inch wide scar that starts right over pelvic area. And at the top is a small blot clot that occurred about 4 months ago. The doctors say the blood clot should be no problem unless it gets bigger. I am wondering if it has any connection with what is causing my pain, the Dr's say it does not.

The femoral nerve is different from the LATERAL femoral nerve which causes MP.

Here is a link... illustration 2B shows both nerves in the drawing.
http://www.aafp.org/afp/2000/0401/p2109.html#

The femoral nerve affects a different area of the leg including the shin and knee. The lateral femoral nerve does not reach the knee, and is confined to the front and partial side of the thigh only.

The femoral nerve affects muscle functions. Pain from it will be in the groin area.

The LATERAL femoral nerve of MP does NOT affect muscle functions or strength and is not in the groin but on the side of the upper thigh.

Femoral nerve damage is NOT MP... MP is only a sensory thing, on the front and side of the thigh, and not typically in the deeper groin area.

If your doctor does not understand this distinction...find another doctor.

Again, your symptoms are NOT those that would indicate Meralgia Paresthetica. (MP) A quote from you is puzzling .... I have found that one of the symptoms with MP is your leg will jerk/twitch and that could be what is causing my leg to go out while walking. That is definitely NOT a symptom of MP and I am curious where you found information to make you believe it would be a symptom of MP. MP does NOT affect muscle and will NOT cause your leg to jerk/twitch or go out while walking.

The ONLY nerve involved in MP is the LFCN which is the lateral (meaning side) femoral (meaning femur) cutaneous (meaning SKIN) and the n for nerve. The lateral femoral cutaneous nerve is NOT the same as the femoral nerve.

You mention that the doctor thinks you have MP for sure but never mentioned the LFCN? he does feel like I have MP for sure. He never mentioned anything about a LFCN, he just spoke about the femoral nerve and he said he believes it is what is causing me pain. This is not consistent with MP at all.

You may have misunderstood what the doctor said but if you are sure about his statements, find another doctor quickly. Run, don't walk and get another doctor.

You mentioned a scar but not what caused the scar. Did you have a surgical procedure? Nerves can be damaged during surgical procedures and you might want to consider that possibility before jumping to conclusions of MP or CRPS.

mrsD knows a lot more than I do and I believe she and I both agree that your symptoms are not indicative of MP.

I have lived with MP for over 35 years so I feel like I know quite a bit about it.

How have you come to the conclusion that you have MP? Just this ONE doctor saying you have MP? What testing has been done if any? Has he ruled out other possibilities and by what means?

I think you are going down the wrong track and if you don't find the right diagnosis, you won't be able to get the proper help and treatment you need and deserve.

Please seek another opinion from another doctor and keep us informed.

I am new also...please keep me informed of any help you are getting and where..doctors etc. I live in southern nj and near cherry hill, n.j and philadelphia

Hi sidster,

Welcome to Neurotalk. I see that you have been diagnosed and having treatment for MP. May I ask how long you have had MP? What treatments have you undergone? I see in another post that you have received injections. Are you having the LFCN injected? I also see that you may be interested in radio frequency ablation of the LFCN, is that correct?

Knowing a bit more about your history with MP will allow better responses.

As you have probably read in some of my posts, I have had MP for over 35 years.

Someone I know just underwent surgery for MP which is a last resort when all other modalities of treatment have been unsuccessful and MP has been long term.

If you don't mind telling us more about your history, maybe we can be of some help.