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Old 03-10-2011, 06:27 AM   #16
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Thumbs up Re: I am new - neuropathy symptoms undiagnosed

It's been a little over a year since I posted my first message. In Aug 2010 I finally saw a Rheumatologist and told him everything I've been through and I mean EVERYTHING. He wanted to hear all the details and then asked me more questions. He ordered a multitude of lab work and ruled out IBS and lupus (autoimmune diseases). Labs indicating an inflammatory process were all negative with the exception of CCPS which was 4 times the norm. I was diagnosed with rheumatoid arthritis and immediately placed on methotrexate, folic acid and prednisone. Within a week, my body aches and joint pain started feeling better. In the meantime my internal med doc started me on gabapentin and didn't get relief from the neuropathy in my legs and hands until I reached the max dose of 2700 mgs per day (900 mg 3 x's a day). I was finally relatively pain free for the first time in 5 years. My body temperature regulation was back to normal wih no more hot flashes altering with chills, and cold aching hands. Unfortunately gabapentinr's side effects caused loss of balance, visual changes, slurred speech, difficulty thinking, finding words, emotions were all over the place. I was a danger while driving. I ran into two cars while backing out of my own driveway. I was dysfunctional at work and found it embarrassing because I couldn't string a coherent sentence together. Saw a Neurologist who took me off gabapentin and put me Lamictal 75 mgs daily. My cognitive facilities are back to normal but neuropathy, hot flashes/chills and intolerance to cold is back. I don't know what to think. I've had 4 MRI's just this year-2011. Now i can add knee and hip pain. Started on Humira injections which can take up to three months to kick in.

Enough about me. BiancaSing, thank you for your info on ricketssia. I rejoice in your relief from pain. How long ago did you go to Thailand? I immediately researched ricketssia after receiving your message. From what I read, some diseases caused by ricketssia are self-limiting and my symptoms started 5 years ago. I will definitely discuss this possibility with the rheumatologist. Again, thank you for sharing this information.

Mandymia - I am so sorry your mum is suffering so much. From my experience and research I've done on neuropathy, there are multiple causes of this pain: rheumatoid arthritis, alcoholism or heavy alcohol consumption (for women that would equate to 2 drinks a day), spinal lesions such as what you described your mum has. These are just a few causes. A spinal surgeon told me the longer a patient has radiculopathy, the longer in takes for it to resolve. If permanent nerve damage occurred, neuropathy could also be permanent. Did your mum go through a Pain Management program? They may be able to help in managing her pain. Steroid injections may also provide some relief.

 
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Old 03-10-2011, 02:10 PM   #17
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Re: I am new - neuropathy symptoms undiagnosed

Yeah gone through all of the pain medication treatments. My mother was on Lyrica, don't know what they call it in the U.S but the spine surgeon in Florida gave her oxycodone and took her off Lyrica as there were bad side effects as well as you mentioned. Suffering the burning and numbness in your legs constantly disrupting your sleep can be nerve wrecking. Difficult to put up with as I am her carer. I took her all of the world basically starting from Florida to 5 diffent cities across Australia and still the dam neuropathy obviously hasn't lessoned after successful surgery in the Lumbar L2-L5 and S1.
Thanks for your response. Hope you keep fighting to get better, cause I can't give up.

Mandymia

 
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Old 03-11-2011, 06:03 AM   #18
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Re: I am new - neuropathy symptoms undiagnosed

MandyMia, I was reviewing responses to my posting from beginning to end. Jusbcuz mentioned IMS. I must have missed or forgot about the information he/she provided last year, but I started looking into IMS (Intramuscular Stimulation). Patient testimonials, including Jusbcuz's reported almost immediate pain relief. Have you looked into this as a possible treatment? Sounds too good to be true, but I'm going to look into this further. Drugs aren't cutting it for me either.

 
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Old 03-11-2011, 06:57 PM   #19
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Re: I am new - neuropathy symptoms undiagnosed

Thank you very much for that. Anything that you can find would be very helpful to me and my mother. Yes drugs are only temprary relief but even then they seem useless and they make you drowsy. It's like you forget the world around you inside and out. With my mother being stuck in the house not able to go anywhere because of the pain is heartbreaking for me.

Thanks again, Keep me posted.

 
Old 03-13-2011, 09:52 AM   #20
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Re: I am new - neuropathy symptoms undiagnosed

Quote:
Originally Posted by Frustrated10 View Post
MandyMia, I was reviewing responses to my posting from beginning to end. Jusbcuz mentioned IMS. I must have missed or forgot about the information he/she provided last year, but I started looking into IMS (Intramuscular Stimulation). Patient testimonials, including Jusbcuz's reported almost immediate pain relief. Have you looked into this as a possible treatment? Sounds too good to be true, but I'm going to look into this further. Drugs aren't cutting it for me either.
When I first went to this pain doctor and he told me about the intramuscular stimulation treatment and the fact that I had the possibility of being pain free within 5 minutes, I laughed at him. I've been dealing with this pain for over 13 years and have had hundreds of appointments with various practioners and take pain pills around the clock which only take the edge off of the pain. After the treatment, I was PAIN FREE and I told him it was an absolute miracle. Although I have to go back every 3 weeks to 2 months for another treatment, I do get to experience some time pain free which I still consider a miracle. I must say though, that the treatments are very painful (a large part due to the neuropathy), but it is worth the pain for the end result. Let me know if you have any questions.

 
Old 03-13-2011, 09:18 PM   #21
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Re: I am new - neuropathy symptoms undiagnosed

Hello Jusbcuz thanks again for your reply. Can you tell me is this treatment offered in Australia as well? Does it reduce the burning and numbness in the lower legs as well?

Mandymia

 
Old 03-14-2011, 05:00 PM   #22
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Re: I am new - neuropathy symptoms undiagnosed

Hi there,

You asked about my Rickettsia. I wish it would be that simple, but it seems like I have the more full blown version of Lyme+ co-infections, so will have fun with antibiotics for a while. They are still struggeling to tie up the blood tests, as most of them look normal, apart from 1-2 results which are staring to change (like some thyroid anti-bodies). No sign of Lyme in my blood, but full blown symptoms and antibiotics is working, so it is all based on clinical symptoms at the moment. Nevertheless, my nerve pain is gone, no more numbness, eye pain, etc, etc. Still some diziness and muscle pain in my arms and legs (which is new), which looks more like a co-infection with Bartonella then a rheumatic disease, as don't have any RA or other antibodies. It's all strange and confusing and I am now struggeling not be be declared "cured" after a 4 weeks course of abx, as I am clearly not.

Symptoms started 1-2 weeks after I returned back from Thailand and I remember i had quite a few mosquito bites, can't remember ticks though. Aparently, mosquitos can carry that crap as well.
Will see another infectious disease specialist when I am back in Singapore, just in case, this time from the university hospital, to get the "local perspective" on what they have come accross from people travelling in the region. All I want is a clear diagnosis, which seems so difficult to get. It's just frustrating.

 
Old 03-17-2011, 05:58 AM   #23
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Re: I am new - neuropathy symptoms undiagnosed

I totally understand your frustration....thus my screen name "Frustrated10"!! Keep up the good fight and don't let them declare your are cured until you know in your heart that you are. Only you can be the judge of that. Unfortunately there may be permanent damage caused by the disease process that will result in lingering symptoms which can only be managed, not cured. This outcome is very difficult to accept. On the flip side, once the antibiotic therapy is completed, all you may need is time for your body's own defense mechanisms to take over to cure itself now that the infection has been knocked down by the meds. Please keep me updated on your progress....you sound like a very strong person but sometime you need to vent and I'm listening.

 
Old 03-17-2011, 03:31 PM   #24
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Mandymia HB User
Re: I am new - neuropathy symptoms undiagnosed

Thank you Frustrated10. The name itself says it all. I don't blame you. Yes I am a very strong person and I will not give up the fight. Mums spinal operation is very good as we had reported twice in the six months. No problem there but the nerves obviously are damaged which is why mum can't walk again, Unfortunately so far I am fighting a losing battle taking mum across to the ends of this earth but I won't stop there. As you know pain, burning numbness can really screw up your life and I am a carer and watch mum go through so much suffering and makes me very cross that no matter how much you tried it still remains medically undiagnosed and untreated other than drugs that dose you off feeling like a zomby.

I will keep you updated. Thanks for chatting with me.

Mandymia

 
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