Guest guest Posted July 11, 2001 Report Share Posted July 11, 2001 Rita, Hi, I'm Sue L. from Boston and have some experience with headaches, numbness and nerve pain with RP. I kept getting headaches, either at the back of my head or at the temples with lots of numbness in my fingers (especially on the sides of the fingers), toes and arms. I would get a buzzing pain through my shoulders and arms, especially at night when I tried to sleep. I even had trouble moving my hands or walking, it got so bad. I ended up seeing a neurologist, had an MRI and my problems seem to come from inflammation of my neck. All the nerves to your body have to go through your neck -- this is a pretty small space. I seem to have RP in my spine and when I flare up, I get these symptoms too. If the numbness or nerve pains seems to get better or worse if you move your neck forward or back, this might be a clue. Some people get this anyway without RP, just from wear and tear or a naturally tight spinal space. I went through physical therapy for my neck and am now careful to do stretches and keep my neck strong and watch what position I sleep in. It hasn't gone away but the headaches are mostly gone. I take a low dose of elavil (generic name, amitripyline) every night at bedtime and this helps a lot. I also take voltaren (a NSAID) for my RP and if you're not taking an anti-inflammatory drug, this may help. Now that I know what my symptoms mean, it's not so scary. I was pretty miserable until the diagnosis. Headaches, nerve pain and numbness can also be a sign of vasculitis (inflammation of the blood vessels) which is a more serious thing. You should definitely try to find out the source of your problem. Good luck to you, SUE L. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2001 Report Share Posted July 11, 2001 --- " T. Lovett " lovett@...> wrote: > Rita, Hi, I'm Sue L. from Boston and have some > experience with > headaches, numbness and nerve pain with RP. I kept > getting > headaches, either at the back of my head or at the > temples with lots > of numbness in my fingers (especially on the sides > of the fingers), > toes and arms. I would get a buzzing pain through my > shoulders and > arms, especially at night when I tried to sleep. I > even had trouble > moving my hands or walking, it got so bad. I ended > up seeing a > neurologist, had an MRI and my problems seem to come > from > inflammation of my neck. All the nerves to your > body have to go > through your neck -- this is a pretty small space. > I seem to have RP > in my spine and when I flare up, I get these > symptoms too. If the > numbness or nerve pains seems to get better or worse > if you move your > neck forward or back, this might be a clue. Some > people get this > anyway without RP, just from wear and tear or a > naturally tight > spinal space. > > I went through physical therapy for my neck and am > now careful to do > stretches and keep my neck strong and watch what > position I sleep in. > It hasn't gone away but the headaches are mostly > gone. I take a low > dose of elavil (generic name, amitripyline) every > night at bedtime > and this helps a lot. I also take voltaren (a NSAID) > for my RP and if > you're not taking an anti-inflammatory drug, this > may help. Now that > I know what my symptoms mean, it's not so scary. I > was pretty > miserable until the diagnosis. Headaches, nerve pain > and numbness can > also be a sign of vasculitis (inflammation of the > blood vessels) > which is a more serious thing. You should definitely > try to find out > the source of your problem. > > Good luck to you, SUE L. Sue, Thank you so much for responding. So many strange things are happening. RP is a very puzzling disease. So many different symptoms are related to it and yet so many are not. Today I have experienced some pain in my back around my kidney area. Not bad but irritating. Here again, is this RP, strained back, kidneys (who knows). Again, thanks for responding. How are you doing. How long have you had RP. I live in Montgomery AL and only know of one other person in AL with the disease. Let me hear from you. Rita > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2001 Report Share Posted July 12, 2001 In a message dated 7/11/01 3:18:10 PM Pacific Daylight Time, lovett@... writes: << Rita, Hi, I'm Sue L. from Boston and have some experience with headaches, numbness and nerve pain with RP. I kept getting headaches, either at the back of my head or at the temples with lots of numbness in my fingers (especially on the sides of the fingers), toes and arms. >> Sue thanks for the great post... I have the same symptoms and through an MRI found out basically the same results. I also have fusion in my neck. You are sooo right about once you find out the cause, it isn't as scarey. At first they thought I had MS. It is so good to see you post. I have missed you. Hope you are doing better. Know you are in my thoughts. Are you enjoying your summer? Keep the posts coming. hugs C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2001 Report Share Posted July 14, 2001 Hi Everyone: Cath here. I'm trying to get to my messages and saw this one and boy does it hit home. I did not however have any fusion in my neck, but did have stenosis, and a herniated bulging disc at C3-C4. I was also being worked up for MS but MRI of the brain was absolutely normal (ha ha little do they know huh!) Just wanted to let everyone know I am doing better. Was able to get off the pred from after by spells attacking my nervous system. I did find some reference in the RP literature where they reported one other person who had lower paralysis like I experienced when I collapsed. Thank goodness I had strong elbows to pull me to my purse and chew the Ibuprofen and Pred. I have total feeling back now in my legs. No more horrible headaches like before either. Still get an occassional one, but nothing like the one that caused such pain and drooped my left eyelid almost closed. I tried to research what I had changed during those times and the only thing I can think of is that I did put down a pellet form of bug killer and fertilizer on the grass with a spreader. It wasn't liquid, but I did water lightly after putting it down as directed. I think I nuked myself with the chemicals and it attacked my nervous system. This would directly correlate with what some of us have noticed with other chemical and why RP is now presenting in Gulf war vets. I know a Citronella candle can cause a flair within 1-2 minutes and I can hardly breathe when I am exposed for even a fleeting period of time. I strongly believe their is some allergic component to this disease with my body and when I talked with my pulminologist (the one who worked with RP patients at Yale), he felt that this was very likely and that is why the Adipex-p I take (which has an ephedrine like property) is so helpful in keeping my respiratory system in good shape. It keeps a constant amount in my body so that it prevents my respiratory system from being destroyed. He was absolutely amazed that my PFT was normal in December and had no explanation as to why I am hanging in there so well regarding that other than the Minocin and Adipex-p. Ephedrine is also given to patient's who are having severe allergic reactions to things and has been documented to help in a nebulized form in severe cases of RP. Wanted to let everyone know to be careful if using chemicals or around them since they attack my nervous system so dramatically. Hope everyone is doing well and I do think of you often. I am still fighting the bank trying to get Blain off of the Mortgage but this company is absolutely awful. The house is already in my name only and I have paid all the payments for almost 2 years on time, but they are trying to add thousands on to doing the qualifying assumption. Thank goodness God has brought me an angel there in the form of a supervisor that has now intervened and states will handle it directly from here. The stress from this has been horrible, but once again I'm giving it to God and he is carrying me through the rough times. I will truly celebrate once this is totally over and this part of my life is closed. Work is still hard, but I resigned as the team leader of the major doctor since I was up against someone who is mad I got the position so quickly and determined to see me fail. It doesn't mean a cut in pay so I am learning to let go and simply do the best I can. It's still very hard there, but my health is starting to get better and I know God has stepped in again to get me through this. Heidi, Let me know the phone number where you will be and we will work on getting together. I should be able to drive over to meet you and would love to give you a hug! Again, my best to all and I continue to send prayers your way. God has brought me through so much as he has with others, I know that he will find a way for all of us to somehow deal with all the difficulties with this disease. To the new members, hang in there and keep fighting the docs that don't listen. It's very hard, but there are some that you can still find that will work with you and the longer you have this, the better you know your body and can predict early flares and work to control. I'm only 38 with a 7 year old child who I'm raising as a single parent and keep a fulltime job and take care of my house, lawn, pool etc. I won't pretend it's easy, but with God and my knowledge, I will work to fight this darn disease at all cost. Hope everyone has a good weekend. Take care, Cath RCColloran@... wrote: In a message dated 7/11/01 3:18:10 PM Pacific Daylight Time, lovett@... writes: << Rita, Hi, I'm Sue L. from Boston and have some experience with headaches, numbness and nerve pain with RP. I kept getting headaches, either at the back of my head or at the temples with lots of numbness in my fingers (especially on the sides of the fingers), toes and arms. >> Sue thanks for the great post... I have the same symptoms and through an MRI found out basically the same results. I also have fusion in my neck. You are sooo right about once you find out the cause, it isn't as scarey. At first they thought I had MS. It is so good to see you post. I have missed you. Hope you are doing better. Know you are in my thoughts. Are you enjoying your summer? Keep the posts coming. hugs C DISCLAIMER!! WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2001 Report Share Posted July 20, 2001 Dear Sue L., I live in Kittery Maine but am from Mass and My Rheumy is in Boston. I see Dr. Jack Bukowski at Brigham and Womens. I know you don't see him because he said my sister (who also has RP) and I are the only RP patients he has seen. Who do you see? I understand you live in Boston. My sister lives in Plaistow NH. Thanks, Ellen Quote Link to comment Share on other sites More sharing options...
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