Aa
Introduce yourself here.
Hi everyone you can introduce yourself on this thread.
What brought you here, how long you have been waiting for a diagnosis and a little bit about yourselves.
You can read about me on the top of this page.
3 years and 1 month I have been waiting. Mariax
What brought you here, how long you have been waiting for a diagnosis and a little bit about yourselves.
You can read about me on the top of this page.
3 years and 1 month I have been waiting. Mariax
Ricobord, I have heard Lyme disease can get worse with steroids. I need to see my PCP and will bring it up to her and maybe get tested for that.
The very first day I took my 40 mg of Prednisone, my hands started burning, wrist and elbows hurt and finger tips went numb. It has gotten better since I've been off but stayed that way the whole time I was on prednisone(2 1/2 months). My GI told me people get weird stuff on prednisone, but when I came off of it, the hand prickling stayed and then my bladder and feet started bugging me.
I don't mention the problem starting with prednisone to doctors anymore because they look at me like a crackpot. Prednisone is used for MS and most auto immune diseases, so they find it strange it would happen when I went on it. That's an evil drug and I had eye issues, headaches, anxiety, face pain and skin rashes. I had a bag of weirdness while on it and some it has remained. I have not been the same since.
I have to admit, I don't feel horrible(except for my bladder nagging me all day). I am not tired my joints don't really hurt, so that is why I have not pushed for the Lyme test. My friends daughter does have it and she tires easily and has lots of joint pain. I will research it a little more though.
I'm hoping to wake up one day and all will be gone. Thank you for the information.
The very first day I took my 40 mg of Prednisone, my hands started burning, wrist and elbows hurt and finger tips went numb. It has gotten better since I've been off but stayed that way the whole time I was on prednisone(2 1/2 months). My GI told me people get weird stuff on prednisone, but when I came off of it, the hand prickling stayed and then my bladder and feet started bugging me.
I don't mention the problem starting with prednisone to doctors anymore because they look at me like a crackpot. Prednisone is used for MS and most auto immune diseases, so they find it strange it would happen when I went on it. That's an evil drug and I had eye issues, headaches, anxiety, face pain and skin rashes. I had a bag of weirdness while on it and some it has remained. I have not been the same since.
I have to admit, I don't feel horrible(except for my bladder nagging me all day). I am not tired my joints don't really hurt, so that is why I have not pushed for the Lyme test. My friends daughter does have it and she tires easily and has lots of joint pain. I will research it a little more though.
I'm hoping to wake up one day and all will be gone. Thank you for the information.
AmyKate - please read my post above to Mables3. While you may have MS, you may also have Lyme that is mimicking MS as mine did. Some doctors who treat a lot of Lyme have theorized that when Lyme is mimicking MS, there is usually a second infection present called Bartonella. (True for me.)
I encourage you to also find a LLMD and get tested at IGeneX. I did both and I truly believe it saved my life after I had been through a dozen doctors, 2 ER visits and a hospitalization. An important clue for Lyme is that you feel so horrible. MS patients don't usually feel so horrible at disease onset. However, a late stage Lyme infection with neuro symptoms usually makes the sufferer feel horrible.
I encourage you to also find a LLMD and get tested at IGeneX. I did both and I truly believe it saved my life after I had been through a dozen doctors, 2 ER visits and a hospitalization. An important clue for Lyme is that you feel so horrible. MS patients don't usually feel so horrible at disease onset. However, a late stage Lyme infection with neuro symptoms usually makes the sufferer feel horrible.
I haven't been here on this forum in a while, but I thought I would respond to your post and suggest Lyme Disease. When a Lyme Disease patient is given steroids, they generally get significantly worse. I developed all kinds of new symptoms for 3-4 months straight after only a prednisone shot (which put me in the ER for worsened symptoms) and then four days of oral pred, after which I felt horrible.
I have also read stories of Lyme infections reactivating or worsening Crohn's and IBS. (I had IBS-like symptoms with my Lyme and a Bartonella coinfection.)
A huge problem is that up to half of Lyme patients test false negative. Doctors were taught that a negative means you don't have it, but that is not true. The CDC surveillance criteria was developed to track a narrow definition of Lyme Disease as seen in New England (sore knees and a bulls eye rash). It was designed to produce a minimum of false positives, without regard to how many false negatives it produced. I don't know how it came to be a diagnostic absolute, but in reality, a negative result does not exclude Lyme at all.
You will want to find a LLMD, a Lyme Literate Medical Doctor, as we patients call them. You can find one through your local Lyme support group, your state's Lyme Disease Association, or at ILADS.org. You will also want to get tested at IGeneX, a specialty lab that finds more cases than other labs.
There is also a test called a CD57. It is an immune cell only suppressed by HIV and Lyme. Most people with Lyme for a year or more will have a low count.
You can Google "Tom Grier Lyme" and look for his articles explaining testing and why it is such a problem. You need a LLMD because they know how to make a clinical diagnosis based on symptoms and history, with testing as a support, not as a decider. Also a LLMD will treat you until you are well, and not just for the 2-4 weeks that the IDSA says is always successful.
You can also check out the symptom list in this document. It is written for doctors, but I found it really helpful.
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
I have also read stories of Lyme infections reactivating or worsening Crohn's and IBS. (I had IBS-like symptoms with my Lyme and a Bartonella coinfection.)
A huge problem is that up to half of Lyme patients test false negative. Doctors were taught that a negative means you don't have it, but that is not true. The CDC surveillance criteria was developed to track a narrow definition of Lyme Disease as seen in New England (sore knees and a bulls eye rash). It was designed to produce a minimum of false positives, without regard to how many false negatives it produced. I don't know how it came to be a diagnostic absolute, but in reality, a negative result does not exclude Lyme at all.
You will want to find a LLMD, a Lyme Literate Medical Doctor, as we patients call them. You can find one through your local Lyme support group, your state's Lyme Disease Association, or at ILADS.org. You will also want to get tested at IGeneX, a specialty lab that finds more cases than other labs.
There is also a test called a CD57. It is an immune cell only suppressed by HIV and Lyme. Most people with Lyme for a year or more will have a low count.
You can Google "Tom Grier Lyme" and look for his articles explaining testing and why it is such a problem. You need a LLMD because they know how to make a clinical diagnosis based on symptoms and history, with testing as a support, not as a decider. Also a LLMD will treat you until you are well, and not just for the 2-4 weeks that the IDSA says is always successful.
You can also check out the symptom list in this document. It is written for doctors, but I found it really helpful.
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
A blessed day to all,
I didn't see this thread for some reason the other night when I found this forum so I wrote a post called a quick hello and prayer for all. That night when I found this forum I felt sort of relieved to find people going through not being dxs just like me. Mables3 I know what you mean about family. Although mine don't think I am nuts, they just don't know how to act or cope with me feeling the way I do. This forum is a godsend.
Now, everyone don't get me wrong my husband is an amazing man, but sometimes he just doesn't know what to do since we don't know what's wrong with me. For the past four yrs my health has been a mystery. Tingling sensations in legs, arms, and face. Dizzy spells to the point where I need help to get around, and pain. Just some of my sxs that come and go and effect my life when they please. But I am back in a health program and ready to start on the journey to answers agian. I will be praying you all get answers soon too.
God bless all of ya,
Kimberly
I didn't see this thread for some reason the other night when I found this forum so I wrote a post called a quick hello and prayer for all. That night when I found this forum I felt sort of relieved to find people going through not being dxs just like me. Mables3 I know what you mean about family. Although mine don't think I am nuts, they just don't know how to act or cope with me feeling the way I do. This forum is a godsend.
Now, everyone don't get me wrong my husband is an amazing man, but sometimes he just doesn't know what to do since we don't know what's wrong with me. For the past four yrs my health has been a mystery. Tingling sensations in legs, arms, and face. Dizzy spells to the point where I need help to get around, and pain. Just some of my sxs that come and go and effect my life when they please. But I am back in a health program and ready to start on the journey to answers agian. I will be praying you all get answers soon too.
God bless all of ya,
Kimberly
Wow, I can't believe so many people can't get a firm yeh or nay for this disease. I'll try to keep my story short. I was dx w/Crohns in March 2012(moms side of the family). I'm 47. While on Prednisone my hands intermittently burned and and finger tips went numb(I know, weird it happened while on Pred). Anyways, came off and have had a bag of weirdness since. Still have intermittent burning hands and tingling and buzzing feet. Twitching all over. Mild balance issues and major, major bladder issues. Actually, that's the worst one. I also have (4) 2nd cousins with MS. Had brain and cervical MRI all normal. Have herniated discs. Got the cortisone shots. Helped my stiff neck, but not my hands. Urologist can't find anything so far and my neurologist just reordered my MRI for my brain and cervical for next Fri. Had lots and lots of tests especially for vitamin deficiency's. My Crohns is mild luckily. Well thanks for letting me vent. I think friends and husband are starting to think I am a nut bag.
AmyKate,
I'm sorry there was no answers yet.Some things take awhile,even years as many on this forum and the MS forum have told me.So keep your faith and keep us posted.
Once you get new info you can start a new thread/post and that will be read quicker.
As I told you in the note I sent, there are some awesome members and they will be along soon.:)
Wishing you the best and lifting prayers too!
Hugs and blessings,
Tammy:)
I'm sorry there was no answers yet.Some things take awhile,even years as many on this forum and the MS forum have told me.So keep your faith and keep us posted.
Once you get new info you can start a new thread/post and that will be read quicker.
As I told you in the note I sent, there are some awesome members and they will be along soon.:)
Wishing you the best and lifting prayers too!
Hugs and blessings,
Tammy:)
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