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12-07-2013, 11:04 PM | #1 | |||
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Junior Member
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Hello! I just went back to the neuro last Friday and he has suggested I go on the immune globulin (IVIg) treatments every month. I've done research but would like to hear from those that have done this/had success/no success. Thank you!
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Obstructive sleep apnea, Stiff person syndrome, fibromyalgia, anxiety, and MDD (major depressive disorder) . . |
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12-08-2013, 07:33 PM | #2 | ||
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I do receive IVIG and have had some success with it. I get one RX a month. It stays with me for about 10 days. I wish it lasted longer. They tried to increase the number of treatments per month but I got too sick from them. I hope this helps. |
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12-09-2013, 08:12 AM | #3 | |||
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Thanks for the reply!! I do hope it does well with me too.
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Obstructive sleep apnea, Stiff person syndrome, fibromyalgia, anxiety, and MDD (major depressive disorder) . . |
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12-09-2013, 01:06 PM | #4 | |||
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Its good to hear that you are having some success with IVIG. Can I ask you what kind of Neuropathy you are be treated for? I was diag with SFN around 2 yrs ago. by skin biopsy. My Neurologist does not think I am a "candidate' for IVIG these treatments. My SFN is widespread meaning I feel it in my legs, feet, arms , hands, Torso and face and mouth. Ive had a million blood tests, MRIS, you name it. They are calling it Idiopathic for now. My symptoms are pins and needles, a buzzing sensation that starts in my head and goes down thru my body and I feel burning patches on my skin as it travels down into my feet, leaving me with burning feet. Ive developed tinnitus , I never had it before. I'm almost embarrassed to write this because I know it sounds crazy. Its difficult for me to tell any of my family members what I am going through because of the way it sounds. I appear normal and healthy to everybody else, except for the suffering in my eyes. I take 325 mgs Lyrica, not helping much. My question is does this sound like anything you suffer with. Should I be more persistent for the IVIG. Do you think it could help with my kind of symptoms? I am at my wits end. Dont know what to do or think anymore. This buzzing, tingling and burning for no apparent reason (Idiopathic) is driving me crazy and depressed. Maybe I will make this a new post so other people can read it and offer some advice or help.Thank you for any advice.. Marie |
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12-09-2013, 10:25 PM | #5 | ||
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Hi Marie,
Actually, your symptoms sound exactly like mine. I also had a skin biopsy and was dx'd with SFN. My symptoms work from my feet to my head. The only place spared was the left side of my face. It started in 2008 in my feet. Within the next few weeks it had moved everywhere. I also have tinnitus but it isn't too bad. Some medications can cause it. As you have, I had every test possible and the answer was idiopathic. Both of my doctors say it is Sjogrens. My neurologist did believe that the IVIG would work for SFN but could not get the insurance to agree to it. My rheumo put it into insurance under Sjogren's Syndrome and they finally agreed to pay. He put Sjogrens, SFN and Fibromyalgia. Lucky me!! Currently, I get 20mg of Solumedrol with it. They started that to increase the results from IVIG and after they tried to increase the dose and I got really sick. Please don't ever be embarrassed to post anything here. We are all going through so much and need one another's support. I know how hard it is to help people to understand our illness because we look fine. I am on a medical leave from work and had to go in one day. One of my co-workers told me maybe I shouldn't come in looking so good because people will not believe me. I was not quick enough on my answer and just told her you can see pain. At your next appt. speak with your doctor about IVIG. Do your research and be ready with your reasons you think it will work. I hope this helps. hopeful |
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12-16-2013, 10:43 PM | #6 | ||
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... sounds like it could be Lyme Disease! |
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12-17-2013, 11:29 AM | #7 | |||
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Junior Member
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At first, my neuro had me do the lyme test too. Ive never had a tick on me to my knowledge but surely one would feel that! He had me tested for cat scratch fever as well. Fortunately they came back negative.
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Obstructive sleep apnea, Stiff person syndrome, fibromyalgia, anxiety, and MDD (major depressive disorder) . . |
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12-17-2013, 04:53 PM | #8 | |||
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actually you wouldnt usually feel a tick on you. most are discovered by being seen by yourself or someone else. ticks that carry lyme can be very small
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"Thanks for this!" says: | Kitt (12-17-2013) |
12-10-2013, 08:34 PM | #9 | |||
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Junior Member
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I have the pins/needles feeling in the bottom of my feet every morning I wake. Also, it will randomly creep up in my body and skin in all parts. Even......private parts. (Maybe tmi but it is so true!) When that happened, i thought i had lost it!
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Obstructive sleep apnea, Stiff person syndrome, fibromyalgia, anxiety, and MDD (major depressive disorder) . . |
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12-11-2013, 04:56 PM | #10 | ||
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You did not lose it. It happens to me to. My doctors gave me a cream for it. It is a combination amitriptyline and Baclofen. I had to special order it. You might to speak with your doctor about it.
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