I haven't been on for awhile now. I thought if I tried to stay away from here maybe I would be better off. Well, it didn't work. The only thing it taught me is that you need support from others in the same situation as you. So, most of you that do know me know that I've been having great difficulty with my legs. In fact, in August I lost total control of my legs both physically and sensory. I had to be carried and picked up off the floor. This happened 4 times. I went to several of my doctors who sent me for blood work and another MRI of my lumbar spine since I have a very bad herniated disc at L4-L5 level. According to the doctors my blood work was fine. They were looking for autoimmune and my MRI didn't really show to much of a difference but it did show extra bulges and that an EMG was warranted. One of my doctors actually made a comment that he believed it was psychosomatic and brought in by stress. I took this further and took it upon myself to go to a neurologist because I had other signs and symptoms that just were not adding up. I know when something is wrong. The fact that I was continually falling and tripping over my own feet told me this wasn't in my head. I also can't drive anymore because I can't hold the break without my right leg becoming so weak and shaking. Plus, there is of course our horrendous pain that we all know to well. If I had to drive it was a short drive and now I can't even do that. Most of the time it was around the corner from my house to get my favorite coffee Dunkin' Donuts lol. So, I went to my new neurologist and got lucky with a cancellation otherwise my appointment wouldn't have been till January. She was very smart and knew her stuff. She told me that my neurological test was pointing to lesions in my spinal cord and I needed further testing. She also said just because your blood work came back negative for autoimmune doesn't mean you don't have it. She said there is definitely something wrong with your legs and you and she will found out what it is. It's not in my head. 😔I was relieved but now I was frightened at the same time. What is the moral of this story. We all have to be advocates for our bodies and don't stop. If you know your body and know something is wrong. Don't let someone tell you it's just stress doing it. Be an advocate in this health care system today. I would be walking (or at least what I now consider my walking cause I look like a duck when I walk) around not knowing there could be another monster inside of me besides the Pudendal neuralgia. God bless you all. Prayers for a cure for all of us. Deb❤️🙏👍😩
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Good for you for not giving up, listenining to your body and not being intimidated! Keep up your search and your journey Deb. Prayers and hugs. God bless!
Hi deb, I'm so excited for u. Most people would not be excited, but I know the terrible emotional pain that comes from not having a diagnosis and from being treated like it is psychosomatic. I have a neuromuscular disease in addition to pudendal neuralgia. It's called myasthenia gratis. Try looking it up, u never know. Also, we have to do research anymore and investigate health issues. Many docs can be very dismissive. Myasthenia gratis made me fall,lose control of legs, there were times I couldn't even hold my head up. However, I did not have any lesions on my spine. I'm here for u. I have a new Tele number. I will send to u. God bless u in this terrible struggle. I hope u have a good support group. Lots of love going ur way! Misti
You are correct. It really stinks when you are told it's all in your head to find out yes there is something wrong and you can tell all those who doubted you this. There is a but to this though. I'm not too excited about the possible diagnosis. I know there is a big correlation with PN and autoimmune I just didn't want to be one of those statistics to be honest with you. Yes, it does explain a lot though. I wasn't your typical PN patient. I had all the trimmings of PN but my legs are very badly effected and this isn't classic PN. So, they definitely know it's something further than just PN. When I asked the neurologist is it possible that it could be causing the PN I didn't get a really clear answer I was told the the spinal lesions could mimic PN. I didn't exactly know what that means because my MRN did come back showing damage to my Pudendal nerve. The perineal branch If I recall. I would have to look it up. So, I didn't really understand what she was talking about since she knew I had damaged to the Pudendal nerve. Then again why would I ask such a silly question knowing I have damaged to the nerve itself. I guess what I was looking for is that could MS be a cause of the nerve damage to the Pudendal nerve. I wasn't sure. If anyone could shed some light on this I would greatly appreciate it. Thank you for replying like you did but yes you know I've been going through a lot. I reached out to you today personally I'm sorry I missed you. God bless Deb. 👍🤙🙏🤗
Also remember this. If I come back positive for the MS. It isn't going to change my PN. I still have all the horrendous signs and symptoms we all go through now with an added whammy on top of it. When it was just nerve damage from surgery or a fall that no doctor seems to want to say which came first, I could handle that like I've been doing like we all do. Fighting everyday and living the best we can with this horrible disease. I can't be to excited that now I'm gonna have to worry how much longer my legs are gonna work for me😔 I already can't walk and when I do I walk like a duck and it's so painful. So, I am glad that I know what's wrong with my legs but in some ways I guess I wish it really was just stress. Stay strong everyone and we all can beat this. Remember God doesn't give us what we can't handle and something positive has to come out of it. It's just finding the positive. God bless you all. Stay strong and STAND.
I do need to ask you all something before I close up.
I, too, have pelvic neuralgia when the doctors at the Mayo Clinic did not zero in to PN even though the symptoms are much the same. All of my pain began after a partial hysterectomy.
A fibroid had grown to the size of an orange and was located on the outside of the uterus.
Not only did the pain worsen, but I developed major stinging from the bottom of my left foot all the way up to my pelvic area. It is like sitting in a fire ant bed.
Have any of you had anything similar?
God bless you all.
I don't wish anything like this on anyone, but it is comforting to know I'm not alone.
Yes, I had a partial hysterectomy and as I did tell you. My leg pain ironically began after it. But I also fell around that May and hysterectomy was in June. Doctor was telling me it was from a herniated disc that I got from the fall. But that was effecting my right. At the time most of my leg pain was in the left. It would be more like a dull ache and pins and needles. I would definitely get burning from my buttock to my toes though. They would tell me I'm insane the doctors when I would say to them but look how the dermatome map is of the sacral nerves. And if you look at this map those nerves the one that innervate your private areas run down the entire leg. So, I would just get angry and let them tell me Pudendal neuralgia can't effect your legs. B.S. They don't live our lives everyday now do they. We can teach the doctors quite a bit if they would just truly listen. And that's my thought for the night because I'm in agony and sleeping is out of the question tonight. Bye God bless and praying for our cure everyone. Stay strong and Stand. Deb.
I want to say AMEN to being your own advocate in this world of running across doctors who want to skip around the periphery of your explanations of your pain and suffering by heming and hawing saying well it could be stress.....it's in your head...
The truth is is that they don't know what is going on but way too proud to say I don't know what is going on. Therefore, it is all in your
head. They don't know their business.
Sorry, I just got caught up and couldn't shake that burst of madness when reading your info.
It happened to me on my long, unfinished journey I have been on for the last three plus years. I will comment more later but the pain is stopping me for now.
I do have a a previous post explaining most of my dilemma. I am hurting quite a bit now and will comment and ask questions later.
wondered where you had been, just couldnt keep away from us could you!!!!!!!!!!!!!!!!! you are sounding a lot stonger in your mind than a few months ago, thats great you go girl
Thank you Andrea. There hasn't been a day that has gone by that you haven't crossed my mind In thoughts of how you are and I'm always praying for you. I pray for all of us on here. Even the ppl I don't know. I just feel like we are all one in some way. We all struggle the same way and we can all tell each other's story. So, I feel when I pray I add the entire site to it. Because in reality when I pray for the site I'm in fact praying for those I care about and myself since I truly believe it's like one big family on here. We all share our secrets that are sometimes very disturbing to others but no one can understand us like an other member of our family on here. Thank you Andrea. You are a dear friend. You are never a second away from my mind and i hope you are doing well. With all my love and lots and lots of positive energy your way and good prayers for you my friend. As always Deb. 👍🤗🙏🦋💕🌟😂
not doing to well at the moment, approx 5 months out of surgery and still have a lot of pain, still got to stay positive though.
i am waiting to have a bulkamid injection for my incontinence, the consultant is really and listened to me when i said i didnt want any more major surgery, like a tvt for the incontinence and agreed it would be better to try the injection first, maybe if it works its another problem ticked off my list
Took 6 years for a friend of mine to get a correct diagnosis of myasthenia gravis. Her symptoms were so similar to yours. Maybe you should check it out.
Thank you. They are spinal cord lesions which I know can be MS. I know there are others I just wasn't sure what others. To be honest I'm very down right now even though I seem up beat. I have contemplated the unthinkable several times in the last month which is one of the reasons I looked for support from all of you. My family that use to be so supportive is no longer for personal reasons unrelated to the illness and I feel like I'm such a burden and I've been like this for just for the last 3 and half years. I was able to deal with the pain prior to that. Now I feel like I'm on a roller coaster and I just can't get a hold of it. I hate all the medications, I hate all the sits baths and ice and heat and everything else we all do to get an ounce of relief. It's starting to wear on me. I can't believe alone in feeling this way. I just wish they would come up with a solution for us and at least not charge astronomical prices for treatment out there that may help. I'm just down in the dumps and on absolutely no sleep. Sorry Deb
It took me about two plus years by the time I had a doc diagnose me, I was having over 100 seizures a day. My story is too long to post but I lost a lot of cognitive function from all the damage. The neurologist I was seeing kept telling me that the brain can repair itself. I am living proof of that. It literally amazes me where I am at today when at the start of that journey, I couldn't string together an entire sentence. My point is there is hope for all of us. Hope the pudendal nerve can be repaired, hope for me, hope for myasthenia gratis I had a thymectomy for the myasthenia and after two years, no seizures, no weakness. That was twenty years ago and I take zero meds for the myasthenia. I believe in miracles because they have happened to me and I pray for them for all of u
Firstly you were contacted as the treatment you were promoting is still very experimental- there are no large scale scientific studies to support its use in any condition. Any doctor or scientist guaranteeing success or stating they have a high success rate is either misleading patients or the patient perhaps didn’t have the medical conditions that they were diagnosed with. Mistakes with diagnosis do unfortunately occur. Secondly the admin who contacted you was correct in that we have stated in one of the pinned posts that doctors, personal information should not be posted. This is for your own safety. It is why both myself and Suzanne edited one of your posts to remove personal information and also your Facebook and eBay pages as these aren’t allowed. It is also the guidelines we have received from the Healthunlocked team. For that reason please don’t bad mouth any of the admin team as we are here to help. If you have any grievances or concerns please contact us using the messaging option as we are always happy to help and provide advice
I have made the decision to lock this post so no further replies can be posted. We do have reasons to suspect that the the poster Rarediva who has been very ‘aggressive’ in her promoting of stem cells for PN might not be completely honest. Unfortunately one of our members on here got taken advantage of and paid for this type of surgery by another member who again was very aggressive in promoting stem cells/amniotic fluid as a cure. This makes both myself and others on here upset as we would all love to have our conditions cured. But most of all it makes me angry as we all work on the basis that people are going to be honest. We absolutely support those that perhaps have been helped by a recognised treatment or medication and say so on here. But what we can’t have is people building up others hopes on a treatment that doctors are using and charging for that has no scientific basis at all. Stem cell/amniotic fluid research is an exciting area of research that perhaps will in the future be able to help those with heart disease,cancer and complex neurological conditions etc but for the time being please please don’t be taken in. If it seems too good to be true it usually is and if your not sure send one of us a message- we are only to happy to take a look into it for you. And as usual please feel free to contact either myself or another member of the admin team. Take care and good night 😊
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