[lmwent123]

Hi Everyone,

I have never done this before and am not sure where to start.... I guess the begining... In August of 2011 it started for me with numbness in my rt pinky finger, a kind of heaviness you get when you sleep on your arm all night if ya know what I mean. Actually thats what I thought the problem was. Well it slowly spread to my other fingers and by December my whole hand was effected and the heaviness/numbness started in my rt foot. By Feburary both feet where fully effected and I was having trouble keeping shoes on when walking, they would just twist off. I started getting extremely tired and by the end of the day the heaviness was getting painfull. Other strange things started happening, I would touch things and either not be able to feel it or my perception of what I was feeling was wrong.
I have Hypothyroidism and when I looked up the sympotoms I saw periphal neuropathy was one thing that could present. So I figured I had to get better about taking meds and everything will be fine. Nope, it got worse. I started losing my balance. It was getting so bad I stopped driving (i started hitting the wrong pedal cause I couldnt sense where my foot actually was) and I couldn't take my, then 1yr old son, to the park by myself anymore. I had to turn down a job offer at an optical shop because I cant pick up small objects. Holding utensils became extremely difficult....I finially called my doctor in April 2012, still convienced it was thyroid related. After testing I found out it wasnt and more testing began. She checked my b12 levels, blood sugars, thyroid and a bunch of other stuff, nothing. She began to suspect MS, but because of symptoms and the way it presented she doubted it. She did reffer me to a neurologist.
It took 2 months to get an appointment but finally saw one in November 2012. He R/O MS right on the first visit. I went for an EMG and it did find that I had ganglionopathy. Then I went for more testing to find out what was causing it. Between December 2012 -April 2013 I went for all kinds of testing, lumbar puncture, CT scans, Pet scan, MRI's, bloodwork up the whazoo and no cause for the ganglionopathy has been found. April, my doctors (two more joined my case) detrimined that its Pure Sensory ganglinopathy (aka Sensory Neuronopathy) and I started IVG infusions in June. I just finished my 2nd round of infusions this week.
After 1st treatment I did expierence a little improvement. I was on cloud nine! I had lovely visions of me taking my now 2 1/2yr old outside by myself again and wearing shoes with soles without falling. I even dreampt going back to work by the end of summer. But I lost most of the improvement by the time I started my 2nd treatment.
I saw my Doctor last week, I was detrimined I was going to get a better understanding of illness, what to realistically expect for recovery and future treatments....I only got a better understanding of the Sensory Ganglionopathy. I get why they can't get specific about to expect, but by god is fustrating. I feel like part of me in is in "the waiting place, the most useless place" (Dr.Suess anyone???)
Emotionally its been hell. My friends and family dont get it. Sometimes I dont think they believe me with how bad it actually gets, which is kind of funny. I am typically a "suffer in silence" type of person, which family knows. They know I do not usully complain unless its really really really serious. They have given me grief in the past for NOT turning to them for help. And now that I really need it...I'm pretty much alone. I just ask for help takng my son to the park and nothing. My Boyfriend has been supportive but it seems to come in waves lately. Its like he forgets and we end up arguing than he is supportive again. He wants me to be positive all the time, so fricken hard to do right now. When I'm down he turns it around that its about him some how, which it has nothing to do with him.
I'm embarrassed all the time. Im afraid when I walk people think I'm drunk and if I have my son with me the feeling is worse. I'm sad all the time cause its effected my ability to take care of son the way I want, I dont feel like I am a good mother. You see, He was born 3 months premature. He is the pictuce of health but does have some developemental delays, granted mainly in expressive language, but the worse I have gotten the slower his progression has gotten. I blame myself. With me not working, money has gotten very tight and my boyfriend works a ton of hours. He loses time with our son. So I feel a double whammy of guilt there. I dont feel like me anymore..... Wow this just turned into a pity party for one...not really the way I wanted to go.
I really wanted to contact with others that are going thru this. Get some advice on how to cope with the unknown. Maybe find people who have the same thing that can share what they are going through so I can get an idea of what may happen. I know its very individual and what happens with one person may or may not happen to another. I just need to know the possibilities, knowledge is power, right????

Thank you for letting me go on and on.
Lynn

[Dr. Smith]

Originally Posted by lmwent123

knowledge is power, right????

Right.

Welcome Lynn,

There are many people here dealing with similar issues -- invisible chronic medical conditions, their effect on relationships, and the baggage, guilt, and stigma(tization) that so often accompany them. And we're all in different stages. (See also: Kübler-Ross model, stages of grief chronic illness).

We believe you and we get it, because we've been and are there, with experiences (and hopefully some wisdom) to offer/share.

Doc

[Rrae]

Welcome to NT!

You sure have come to the right place for support and understanding. This is the perfect place to be for all the reasons you are struggling with. There are forums here that will address these issues, so feel free to look thru them and post wherever you'd like.

Probably, the best place to start would be the Peripheral Neuropathy forum because so much of what you shared seems to point in this direction. There are SO many variations of neuropathies. So, DO check out the PN forum. So much wisdom to be had there!

Here's a shortcut link to get you there:

http://neurotalk.psychcentral.com/fo...sprune=-1&f=20

It's great to have you!
Caring,
Rae

[lmwent123]

Thank you Rae, I will start there.

[lmwent123]

Doc,
Thank you for the links. I honestly never thought of what I am going thru as grief, makes perfect sense now. Its nice to put a name on it, yet at the same time I feel foolish for grieving. Like I'm being dramatic or something, but I wouldn't think twice about someone else going thru the stages for their own chronic illness.
Lynn

[Dr. Smith]

Originally Posted by lmwent123

Doc,
Thank you for the links. I honestly never thought of what I am going thru as grief, makes perfect sense now. Its nice to put a name on it, yet at the same time I feel foolish for grieving. Like I'm being dramatic or something, but I wouldn't think twice about someone else going thru the stages for their own chronic illness.
Lynn

There are many things we don't think about until they affect us, or someone we know, personally, and nothing can prepare us for these things. Whatever you feel, that's part of being human.

Doc

[ChinChunPie]

Hi Everyone. . . Am finding as time passes, more symptoms come. . . . Several years ago, was dx with Chiari Malformation, and was decompressed and C1/2 were laminated. . . . Anyways, here I am 2 years later, and still have the same symptoms, and no relief. . .
Recently in hospital with severe back issues, and keeping that in check with bimonthly injections done by the neurologist.
Last week went to my MD and I now have inappropriate sinus tachycardia. . . my heart rate is 175. . . way too fast - normal heart rate is 60/70. . . .so, again, on medication and also on a heart monitor for another several weeks. . .
As I said, one thing after another. . . am tired from talking to family, who is totally not supportive of my condition, asking all kinds of dumb questions and forcing food on me when I am in the middle of nausea/vomiting stage. . . .
IDK, but, maybe next time I go to the doc, they will all come with me. . . .
Well, hope all is good for everyone!

[Hopeless]

Wow, hope they get your heart rate back to a normal sinus rhythm. Glad to hear you are on a monitor.

[ginnie]

Welcome to Neuro Talk. You do have a right to complain. What you are experiencing is not easy. If you have a good doctor who can empathize, this would help you. I also think council would be of benefit, just to be able to cope with all that is on your plate. This is the place, to meet some good people who will listen and try to respond to you. You are not alone, there are many of us who go through lots of medical issues, and then have families that just don't understand all the time. We will be here to listen and try to help. Have you gone to several neurologists for opinions? ginnie

[Ouchnic]

Originally Posted by lmwent123

Hi Everyone,

I have never done this before and am not sure where to start.... I guess the begining... In August of 2011 it started for me with numbness in my rt pinky finger, a kind of heaviness you get when you sleep on your arm all night if ya know what I mean. Actually thats what I thought the problem was. Well it slowly spread to my other fingers and by December my whole hand was effected and the heaviness/numbness started in my rt foot. By Feburary both feet where fully effected and I was having trouble keeping shoes on when walking, they would just twist off. I started getting extremely tired and by the end of the day the heaviness was getting painfull. Other strange things started happening, I would touch things and either not be able to feel it or my perception of what I was feeling was wrong.
I have Hypothyroidism and when I looked up the sympotoms I saw periphal neuropathy was one thing that could present. So I figured I had to get better about taking meds and everything will be fine. Nope, it got worse. I started losing my balance. It was getting so bad I stopped driving (i started hitting the wrong pedal cause I couldnt sense where my foot actually was) and I couldn't take my, then 1yr old son, to the park by myself anymore. I had to turn down a job offer at an optical shop because I cant pick up small objects. Holding utensils became extremely difficult....I finially called my doctor in April 2012, still convienced it was thyroid related. After testing I found out it wasnt and more testing began. She checked my b12 levels, blood sugars, thyroid and a bunch of other stuff, nothing. She began to suspect MS, but because of symptoms and the way it presented she doubted it. She did reffer me to a neurologist.
It took 2 months to get an appointment but finally saw one in November 2012. He R/O MS right on the first visit. I went for an EMG and it did find that I had ganglionopathy. Then I went for more testing to find out what was causing it. Between December 2012 -April 2013 I went for all kinds of testing, lumbar puncture, CT scans, Pet scan, MRI's, bloodwork up the whazoo and no cause for the ganglionopathy has been found. April, my doctors (two more joined my case) detrimined that its Pure Sensory ganglinopathy (aka Sensory Neuronopathy) and I started IVG infusions in June. I just finished my 2nd round of infusions this week.
After 1st treatment I did expierence a little improvement. I was on cloud nine! I had lovely visions of me taking my now 2 1/2yr old outside by myself again and wearing shoes with soles without falling. I even dreampt going back to work by the end of summer. But I lost most of the improvement by the time I started my 2nd treatment.
I saw my Doctor last week, I was detrimined I was going to get a better understanding of illness, what to realistically expect for recovery and future treatments....I only got a better understanding of the Sensory Ganglionopathy. I get why they can't get specific about to expect, but by god is fustrating. I feel like part of me in is in "the waiting place, the most useless place" (Dr.Suess anyone???)
Emotionally its been hell. My friends and family dont get it. Sometimes I dont think they believe me with how bad it actually gets, which is kind of funny. I am typically a "suffer in silence" type of person, which family knows. They know I do not usully complain unless its really really really serious. They have given me grief in the past for NOT turning to them for help. And now that I really need it...I'm pretty much alone. I just ask for help takng my son to the park and nothing. My Boyfriend has been supportive but it seems to come in waves lately. Its like he forgets and we end up arguing than he is supportive again. He wants me to be positive all the time, so fricken hard to do right now. When I'm down he turns it around that its about him some how, which it has nothing to do with him.
I'm embarrassed all the time. Im afraid when I walk people think I'm drunk and if I have my son with me the feeling is worse. I'm sad all the time cause its effected my ability to take care of son the way I want, I dont feel like I am a good mother. You see, He was born 3 months premature. He is the pictuce of health but does have some developemental delays, granted mainly in expressive language, but the worse I have gotten the slower his progression has gotten. I blame myself. With me not working, money has gotten very tight and my boyfriend works a ton of hours. He loses time with our son. So I feel a double whammy of guilt there. I dont feel like me anymore..... Wow this just turned into a pity party for one...not really the way I wanted to go.
I really wanted to contact with others that are going thru this. Get some advice on how to cope with the unknown. Maybe find people who have the same thing that can share what they are going through so I can get an idea of what may happen. I know its very individual and what happens with one person may or may not happen to another. I just need to know the possibilities, knowledge is power, right????

Thank you for letting me go on and on.
Lynn

Your family and boyfriend do not understand because your pain and hardship is not visible from the outside. Most people think I am faking it or that I am drunk except for my immediate family. They know they need to push buttons for me and hold on to my arm when my cane isn't there. But they sometimes forget also and it is ok to let me struggle on my own. I think your family and boyfriend miss the old you maybe even more than you do. It is good that you could go on : you had a lot to say!