Guest guest Posted March 16, 2009 Report Share Posted March 16, 2009 , The progestogen-related side effects of the coil can include acne, decreased libido, headache, lower abdominal pain, low back pain, nausea, period pain, sweating, tender breasts, water retention and weight gain. So perhaps some of your pain is coming from this. Or your leg pain and constant movement may be from Restless Leg Syndrome. (RLS) It has been linked to CMT type 2. The medication Mirapex may help, also drinking tonic water (it has quinine in it) or perhaps quinine tablets would help. Have you had your Iron levels checked? Are you hypoglycemic? Since you are taking Gabapentin (which was originally a seizure medication), perhaps this is aggravating your symptoms. Have you had any surgery recently? See http://en.wikipedia.org/wiki/Restless_legs_syndrome Good idea to talk to your doctor about all this. Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2009 Report Share Posted March 16, 2009 Thank you Gretchen for you reply, I think I may ask for my coil to be removed even though the only symptoms from what you have listed is a non existant libido, a little acne, tender breasts and lower back ache at times. I have had my iron levels tested may times over the years results ranging from anemic to my blood cells being small and low in count, I have never got to the bottom of why as they always find something else wrong with me along the way so get side tracked away from this. The Gabapentin is prescribed for the pain all over me. No surgery since 2002 on a heamangeoma on my foot, which was unsuccesful and I have been advised that amputation is the only option for that now. I will look into the restless legs as I know my father suffers like me too. I see my doctor at least once a month normally and every week at the moment because I feel so ill but he only has about 3 minutes to see me so every time I go I feel that I am wasting my time because I don't get sorted out. Here in the UK we do not have enough professional doctors etc who know what CMT is every time I see another new doctor, paramedic or nurse I have to explain what CMT is, and they look at me as if I have just made up a new thing. I am seriously thinking of carring a printed sheet around with me so I can hand it to them. Another thing I forgot to ask was does CMT affect hearing as I now have to have the TV that loud that my husband complains, he also says that I miss things that people say. I also find that my voice is going deeper as I get older.....very strange? Once again that you for listening to me it helps Kind Regards Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2009 Report Share Posted March 16, 2009 , Yes, in some types of CMT hearing can be affected. Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2009 Report Share Posted March 16, 2009 Dear , Reading your words my heart goes out to you! I am sorry you are going through all this anguish. I hope you will find a way out of some of these difficulties. Though I am not sick with CMT myself, I have this sickness very close to me through my eldest daughter. I have seen her also in difficulties that I feel resembles hers. I would therefore - and hope you don't mind - like to share some her experiences in case they can help you. 1. First of all the doctor issue. If you have read some of the mails on this lately, you may have seen this problem with uninformed doctors many meet as they meet their doctors. Many good advice have passed and maybe my daughters practice can be something for you to pick up. She has made a map for information concerning a) general info on CMT, - types, symptoms, where to read more about it, so on. she also collected copies from journals whenever she saw a doctor, had tests made, etc. so as to COLLECT the information about her. She also - of course - carries her diagnoses with her (dna-test) and what this says about her sickness. Anyway, this has helped her - and the doctors! - tremendously and whiped sarcastic or insinuating remarks about her psychological frame of mind, off many doctors lips! DOCTORS DO NOT REACT WELL TO NOT BEING ON TOP OF THINGS. - which is partly their trainings fault - " we must know all " and partly something else. Of course this does not apply to ALL doctors, but certainly to too many!! Doctors are also very stressed...which seemes to be the case with your doctor. It is absolutely unsatisfactory that you spend 3 minutes with him each time...and he needs to get all the information he can. YOU NEED TO PREPAIRE EVERY CONTACT WITH YOUR DOCTOR VERY CAREFULLY! - and you need to bring a bright person with you as an " advocate " for you, when you go. Also - have you thought of changing???????????????????? Try this...collect all the good answers here...make " workingtime " in you weekly scedule, to figure out who to contact, what to do..etc. as a next step. 2.just at last here: my daughter became terribly sick with Gabapetin. The nurse that helped her to reduce pain mentally so forth (a clinic at a hospital) told her this. She got a new life after ridding herself of this medicine. 3. At last: think intelligently.....use every good inch of your mind....bring other minds in to help you to....write things down - or get someone else to do it.... You maybe on a better road if you try. I just with this for you. love, Anne Quote Link to comment Share on other sites More sharing options...
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