Aa
Hello,again
Hi everyone, I haven't posted here in a long time. None of you know me except dear Maria, Jibs and Binx. So many struggling in neurological limbo land. My heart goes out to all of you and pray you find relief.
I'll fill you in on my story. Four years ago I was an energetic, active 68 year old. I could run rings around my kids. Well I thought because I was getting older I should get a check up. Everything was fine except for an achy back from stacking fire wood. It was not bad enough to warrant a doctors visit but I was there so I mentioned it. He thought a little PT would help but lets get an MRI anyway.
What a "can of worms we opened". The MRI showed large growths on both my ovaries. I had no symptoms at all. So off to the gyno. He was adamant that I needed a total hysterectomy. I agreed but had to have a CT scan. This confirmed the growths but also showed something in my stomach that they could not identify. Off to the gastro doctor.
Had an endoscopy which found nothing and then an endoscopic ultrasound also nothing. They concluded there was a flaw on the first CT scan. They did do a stomach biopsy and found I had H-pylori (again, no symptoms).
Three months later I finally had the hysterectomy. Everything was benign. Thank God!
While I was recovering I came down with shingles on my left sciatic nerve. The rash was on my foot and up to my knee but the pain was in my hip and butt. I never felt pain like that before! After seven weeks I consented to a steroid epidural. The shingles pain finally lessened but then tingling started in the other leg. Then my fingers started to tingle. My digestion was next, nothing would go through.
Back to the gastro doc. They decided I needed to treat the H-pylori. They gave me Prev-Pak (heavy duty antibiotics and prevacid) for two weeks. The day of the last dose all my neuro symptoms really began. I was tinglng from head to foot. Electric shocks everwhere. It felt like there were ants with pins on their feet walking all over my body. My skin was burning, my vision was blurred and I could not eat.
Off to the neurologist. Brain MRI and a zillion blood tests. Nothing. She said my immune system got confused and started attacking my nerves. Just wait it out and maybe it will get better. They offered me anti-siezure meds and antidepressants which I refused.
The next two years were a nightmare. I could barely sit down, the nerves going down my legs were so inflammed, I could not sleep. I was a total mess.
Then little by little it started to improve a bit. Here I am four years later and I can say I am 50/60% better. I still have neuropathy in my feet, some scalp, face and body tingling everyday, some double vision but I seem to be able to handle it. My stamina has improved but I have to be careful or I will relapse.
I stopped going to doctors!
Thanks for listening,
Georgia
I'll fill you in on my story. Four years ago I was an energetic, active 68 year old. I could run rings around my kids. Well I thought because I was getting older I should get a check up. Everything was fine except for an achy back from stacking fire wood. It was not bad enough to warrant a doctors visit but I was there so I mentioned it. He thought a little PT would help but lets get an MRI anyway.
What a "can of worms we opened". The MRI showed large growths on both my ovaries. I had no symptoms at all. So off to the gyno. He was adamant that I needed a total hysterectomy. I agreed but had to have a CT scan. This confirmed the growths but also showed something in my stomach that they could not identify. Off to the gastro doctor.
Had an endoscopy which found nothing and then an endoscopic ultrasound also nothing. They concluded there was a flaw on the first CT scan. They did do a stomach biopsy and found I had H-pylori (again, no symptoms).
Three months later I finally had the hysterectomy. Everything was benign. Thank God!
While I was recovering I came down with shingles on my left sciatic nerve. The rash was on my foot and up to my knee but the pain was in my hip and butt. I never felt pain like that before! After seven weeks I consented to a steroid epidural. The shingles pain finally lessened but then tingling started in the other leg. Then my fingers started to tingle. My digestion was next, nothing would go through.
Back to the gastro doc. They decided I needed to treat the H-pylori. They gave me Prev-Pak (heavy duty antibiotics and prevacid) for two weeks. The day of the last dose all my neuro symptoms really began. I was tinglng from head to foot. Electric shocks everwhere. It felt like there were ants with pins on their feet walking all over my body. My skin was burning, my vision was blurred and I could not eat.
Off to the neurologist. Brain MRI and a zillion blood tests. Nothing. She said my immune system got confused and started attacking my nerves. Just wait it out and maybe it will get better. They offered me anti-siezure meds and antidepressants which I refused.
The next two years were a nightmare. I could barely sit down, the nerves going down my legs were so inflammed, I could not sleep. I was a total mess.
Then little by little it started to improve a bit. Here I am four years later and I can say I am 50/60% better. I still have neuropathy in my feet, some scalp, face and body tingling everyday, some double vision but I seem to be able to handle it. My stamina has improved but I have to be careful or I will relapse.
I stopped going to doctors!
Thanks for listening,
Georgia
Thank you for your comments.
Jibs - I cancelled my last appointment with the neurolgist. She claims that they tested me for everything and she doesn't know why I have these issues. She keeps wanting me to try different drugs and everytime I do I feel worse. So I try to do my own thing with my supplements. As for relapses, I guess you could say I am exercise intolerant. If I overdo I am back to square one. Recently though I have been able to ride my bike around the block! Hurray! But I know easy does it. I see you have started on Avonex. I am so glad you are getting some treatment that will help you!
Sarah - I have been reading some of your posts. You give so much comfort to everyone. I'm glad you fianlly have a dx and are getting some symptom relief. What are you taking?
Niko - In the beginning I used to cry and say they ruined me(the doctors). I can't go back and I can't live in that angry place. I have tried to accept what has happened and trying to figure out what God wants me to learn from this.
I have become more tolerant and patient and found that love overcomes fear.
I also have this desire to learn all I can about natural healing. I am always researching something. lol.
Let me run some things by you:
I am not celiac--I have been tested a few times and always negative. Also because I have been told to be gluten free anyway I tried for months at a time but never felt any better. My body likes grains.
Milk is another story. I am not lactose intolerant but it makes my inflammation worse.
I went on a fruit and vegetable diet with Xymogen protein shakes for three weeks. I had to stop because my skin was burning so much.
I think I remember you saying something about an alkaline diet not always being good.
I thought maybe candida...took the usual supplements for that but no real difference.
Leaky gut...took whey protein and probiotics. glutamine makes me worse as does quercitin.
Been reading about the Th1 and Th2 sides of the immune system. I think I may be Th2 dominant.
One other thing... In the very begining I went to a alternative MD and he put me on a low dose of thyroid even though my blood test was normal. Now I can't get off it because I get really fatigued. My PCP checks me every six months and my tsh is normal but still has me take it.
Sorry this is so long. I get carried away. lol
Thanks,
Georgia
Jibs - I cancelled my last appointment with the neurolgist. She claims that they tested me for everything and she doesn't know why I have these issues. She keeps wanting me to try different drugs and everytime I do I feel worse. So I try to do my own thing with my supplements. As for relapses, I guess you could say I am exercise intolerant. If I overdo I am back to square one. Recently though I have been able to ride my bike around the block! Hurray! But I know easy does it. I see you have started on Avonex. I am so glad you are getting some treatment that will help you!
Sarah - I have been reading some of your posts. You give so much comfort to everyone. I'm glad you fianlly have a dx and are getting some symptom relief. What are you taking?
Niko - In the beginning I used to cry and say they ruined me(the doctors). I can't go back and I can't live in that angry place. I have tried to accept what has happened and trying to figure out what God wants me to learn from this.
I have become more tolerant and patient and found that love overcomes fear.
I also have this desire to learn all I can about natural healing. I am always researching something. lol.
Let me run some things by you:
I am not celiac--I have been tested a few times and always negative. Also because I have been told to be gluten free anyway I tried for months at a time but never felt any better. My body likes grains.
Milk is another story. I am not lactose intolerant but it makes my inflammation worse.
I went on a fruit and vegetable diet with Xymogen protein shakes for three weeks. I had to stop because my skin was burning so much.
I think I remember you saying something about an alkaline diet not always being good.
I thought maybe candida...took the usual supplements for that but no real difference.
Leaky gut...took whey protein and probiotics. glutamine makes me worse as does quercitin.
Been reading about the Th1 and Th2 sides of the immune system. I think I may be Th2 dominant.
One other thing... In the very begining I went to a alternative MD and he put me on a low dose of thyroid even though my blood test was normal. Now I can't get off it because I get really fatigued. My PCP checks me every six months and my tsh is normal but still has me take it.
Sorry this is so long. I get carried away. lol
Thanks,
Georgia
Sorry, but what am I missing?
Please correct me here if I'm wrong but this is a typical case
of Iatrogenic Disease (Any adverse condition in a patient occurring as the result of treatment by a physician). The 3rd most fatal disease in North America and the Top most fatal disease, when combined with Nosocomial Disease (Hospital acquired Disease).
My understanding of this case.
Hysterectomy.
Total Hysterectomy???? When no symptoms are present???.
Without an Endometrial Biopsy??
Reasons for choosing this operation -when confirmed benign following the Endometrial Biopsy-are treatment of various common noncancerous uterine conditions such as fibroids, endometriosis, prolapse that leads to DISABLING levels of pain, discomfort, uterine bleeding, and emotional stress.
Ref:Hysterectomy
Author: Hetal B Gor, MD, FACOG; Chief Editor: Michel E Rivlin, MD
H-Pylori.
According to the National Institute of Health, approximately 20% of people under 40 years old and HALF of adults over 60 years old are infected.
Having H. pylori infection doesn't necessarily mean you'll have ulcers or develop stomach cancer. In fact, most people infected with the bacteria NEVER have symptoms or problems such as ulcers.
Prevpac.
Huge issues with this. many lawsuits, defective batches dispensed and administered, numerous serious side effects.
Go to drug side effects 101 website for details (patients polls and reviews)
Epidural Steroid Injections
1.From the steroid medication.
Localized increase in pain,Non-positional headaches resolving within 24 hours, Facial flushing, Anxiety, Sleeplessness, Fever the night of injection
High blood sugar, A transient decrease in immunity because of the suppressive effect of the steroid, Stomach ulcers, Severe arthritis of the hips (avascular necrosis) Cataracts
2. From the injection
Infection, Dural Puncture, Bleeding, Nerve damage.
Source: Spine Health website
Shingles.
Unless the immune system is compromised (following the unnecessary to my opinion hysterectomy and the amount of stress in the midst of all this, it WAS compromised!), it suppresses reactivation of the VZV virus and prevents shingles.
What a pity. But one cannot go back. We all have to learn from stories
like this one. And unfortunately it happens all the time.
My neuro had mixed patient files, lost my file, had me do all kinds of unnecessary tests, argued with me till the very end and on and on.
I was wise to refuse any medication or any invasive test that was suggested by him, when I could tell that it wasn't right. Almost instantaneous decisions, very little explaining , medical Gibberish mumbling that made no sense.
My own family doctor argued with me in the E.R. while I was having Excruciating pains -as of where I was experiencing pains did not agree with the chart. I fired him on the spot! (recently I found out he's no longer practicing medicine as he lost his medical licence!)
I'm sure, then, they had me down as a psych patient or something.
Psychosomatic/autoimmune illness was the unofficial dx, after all
those doctor visits, all of the tests, all the medical merry-go-round rides.
When I was called one day out of the blue from a psychiatrists office for an appointment, without having any prior knowledge about this, I made my decision right then.
My relationship with conventional medicine from that day on, would be limited to trauma care, and this with extreme reservation!
Needless to say, that psych appointment never took place.
The last thing I needed was some psych drugs to tame my "self-induced
psychosomatic condition".
PTSD - following a nasty car accident - that had triggered also an infectious condition, is what I had.
Self diagnosed, self-treated successfully without any drugs.
Thanks for reading this long post.
Comments are more than welcome.
Cheers!
Niko
Please correct me here if I'm wrong but this is a typical case
of Iatrogenic Disease (Any adverse condition in a patient occurring as the result of treatment by a physician). The 3rd most fatal disease in North America and the Top most fatal disease, when combined with Nosocomial Disease (Hospital acquired Disease).
My understanding of this case.
Hysterectomy.
Total Hysterectomy???? When no symptoms are present???.
Without an Endometrial Biopsy??
Reasons for choosing this operation -when confirmed benign following the Endometrial Biopsy-are treatment of various common noncancerous uterine conditions such as fibroids, endometriosis, prolapse that leads to DISABLING levels of pain, discomfort, uterine bleeding, and emotional stress.
Ref:Hysterectomy
Author: Hetal B Gor, MD, FACOG; Chief Editor: Michel E Rivlin, MD
H-Pylori.
According to the National Institute of Health, approximately 20% of people under 40 years old and HALF of adults over 60 years old are infected.
Having H. pylori infection doesn't necessarily mean you'll have ulcers or develop stomach cancer. In fact, most people infected with the bacteria NEVER have symptoms or problems such as ulcers.
Prevpac.
Huge issues with this. many lawsuits, defective batches dispensed and administered, numerous serious side effects.
Go to drug side effects 101 website for details (patients polls and reviews)
Epidural Steroid Injections
1.From the steroid medication.
Localized increase in pain,Non-positional headaches resolving within 24 hours, Facial flushing, Anxiety, Sleeplessness, Fever the night of injection
High blood sugar, A transient decrease in immunity because of the suppressive effect of the steroid, Stomach ulcers, Severe arthritis of the hips (avascular necrosis) Cataracts
2. From the injection
Infection, Dural Puncture, Bleeding, Nerve damage.
Source: Spine Health website
Shingles.
Unless the immune system is compromised (following the unnecessary to my opinion hysterectomy and the amount of stress in the midst of all this, it WAS compromised!), it suppresses reactivation of the VZV virus and prevents shingles.
What a pity. But one cannot go back. We all have to learn from stories
like this one. And unfortunately it happens all the time.
My neuro had mixed patient files, lost my file, had me do all kinds of unnecessary tests, argued with me till the very end and on and on.
I was wise to refuse any medication or any invasive test that was suggested by him, when I could tell that it wasn't right. Almost instantaneous decisions, very little explaining , medical Gibberish mumbling that made no sense.
My own family doctor argued with me in the E.R. while I was having Excruciating pains -as of where I was experiencing pains did not agree with the chart. I fired him on the spot! (recently I found out he's no longer practicing medicine as he lost his medical licence!)
I'm sure, then, they had me down as a psych patient or something.
Psychosomatic/autoimmune illness was the unofficial dx, after all
those doctor visits, all of the tests, all the medical merry-go-round rides.
When I was called one day out of the blue from a psychiatrists office for an appointment, without having any prior knowledge about this, I made my decision right then.
My relationship with conventional medicine from that day on, would be limited to trauma care, and this with extreme reservation!
Needless to say, that psych appointment never took place.
The last thing I needed was some psych drugs to tame my "self-induced
psychosomatic condition".
PTSD - following a nasty car accident - that had triggered also an infectious condition, is what I had.
Self diagnosed, self-treated successfully without any drugs.
Thanks for reading this long post.
Comments are more than welcome.
Cheers!
Niko
Hi Georgia. I'm Sarah. I joined this forum about a year ago or so. I know I've seen you post before...not sure if it was here or somewhere else, lol.
I was dx'd with MS about 3 months ago or so (I think, lol! I can't remember anything!) I had given up finding a dx or a doctor who would at least treat me. I then found this awesome doc I am with now who treats me with dignity and respect and treats my symptoms (all I ever wanted!) and lead me to my dx.
Please don't give up! Someone out there can and will help you! How many different docs have you seen? You said gastro, neuro, gyno, and regular doc? What about a pain specialist? Maybe they could help? Shingles on your sciatic nerve? That must be about the most painful thing possible!!! I've had bouts of sciatica and I've heard from patient's I've cared for over the years that shingles pain is one of the worst pain's out there. OUCHIE!!!!
Hang in there and welcome back to the forum! Hope to see you around.
Sarah
I was dx'd with MS about 3 months ago or so (I think, lol! I can't remember anything!) I had given up finding a dx or a doctor who would at least treat me. I then found this awesome doc I am with now who treats me with dignity and respect and treats my symptoms (all I ever wanted!) and lead me to my dx.
Please don't give up! Someone out there can and will help you! How many different docs have you seen? You said gastro, neuro, gyno, and regular doc? What about a pain specialist? Maybe they could help? Shingles on your sciatic nerve? That must be about the most painful thing possible!!! I've had bouts of sciatica and I've heard from patient's I've cared for over the years that shingles pain is one of the worst pain's out there. OUCHIE!!!!
Hang in there and welcome back to the forum! Hope to see you around.
Sarah
Oh Georgia,
I am so sorry you have not found a doctor that can solve this for you. Please do not give up. You deserve to feel better. Maybe a break is all you need, and try agaib with someone new?
So how did your last doc leave it with you? Are yo feeling btter or have you had any relapses?
Thinking of you
Jibby
I am so sorry you have not found a doctor that can solve this for you. Please do not give up. You deserve to feel better. Maybe a break is all you need, and try agaib with someone new?
So how did your last doc leave it with you? Are yo feeling btter or have you had any relapses?
Thinking of you
Jibby
Hey Georgia!
I know that it is impossible for some people to think of finding me here.
We've exchanged in other forums and messaged last year a few times.
My successful "escape" from Limbo land many years ago, led me to join this group, as a way to give back by offering my opinion and suggestions to help, as I know how tough it is to be in such a situation.
And I've made many friends here and we share so much.
Yourself, you are a great example and an inspiration to all, with your determination and perseverance to overcome all those health issues.
I'm glad you're still going strong and feeling better.
It's funny that you mentioned you stopped going to doctors!
I got better and eventually experienced optimum health, only after
taking health matters in to my own hands! lol! Totally.
And in the process of getting REAL health education and knowledge,
I developed my second career in Alternative and Holistic Therapy.
It's great to "hear" from you again!
Love and Hugs!
Niko
P.S. You should look into transdermal Magnesium Oil for your remaining issues! It's a very fundamental remedy.
Like daily application, for efficient results.Let me know if you need details.
Disregard this, if you're already doing it.
I know that it is impossible for some people to think of finding me here.
We've exchanged in other forums and messaged last year a few times.
My successful "escape" from Limbo land many years ago, led me to join this group, as a way to give back by offering my opinion and suggestions to help, as I know how tough it is to be in such a situation.
And I've made many friends here and we share so much.
Yourself, you are a great example and an inspiration to all, with your determination and perseverance to overcome all those health issues.
I'm glad you're still going strong and feeling better.
It's funny that you mentioned you stopped going to doctors!
I got better and eventually experienced optimum health, only after
taking health matters in to my own hands! lol! Totally.
And in the process of getting REAL health education and knowledge,
I developed my second career in Alternative and Holistic Therapy.
It's great to "hear" from you again!
Love and Hugs!
Niko
P.S. You should look into transdermal Magnesium Oil for your remaining issues! It's a very fundamental remedy.
Like daily application, for efficient results.Let me know if you need details.
Disregard this, if you're already doing it.
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