Aa
Do I even have MS?
I have been fighting this 'problem' since 2000 and it's just been getting worse! It started as a flu,-got worse; high fever and all,-(red on face and eyes) joints hurting tremendously. Ended-up in the Hospital,-P-ANCA CPK-145, High Aldolase couldn't walk, rest easy on any of my limbs (they were so painful for months even after the Hospital!) , dropped all kinds of "breakables" at home!! Couldn't get myself out of a pool( no energy in my limbs), not even to lift myself out by my legs! Recently, have seizures that really hurt me in the morning hours. They last for hours! Starts at the hip, goes down through to the knee and then through the shin into the foot. Very, very painful. All we can do is try to put hot heating pads on my legs and sometimes arms too! I'm in bed that whole day,--sleeping after the seizure(s). I have also had what felt like a "fire" on the bottom of my feet up to the ankles! I have had MRI's taken of my head and neck; I do have 2 lesions. As time goes on; I am losing the use of my legs, and sometimes (not as frequent) my arms. The pain is getting unbearable and my recent Neurologist suggests I go to a major "Hospital",--to get totally looked-at?!!I am also finding that when I sit on my legs, or go down on my "haunches",--I need help getting-up. I was a 'ballerina" for over 12 yrs. and not being able to use my body,--my limbs,etc... is so unchonchonable! "HELP!" Anyone have suggestions or opinions as to 'what to do next??'
Hi everyone. My sister is the youngest diagnosed MS patient in history. I have watched her suffer greatly as Dr's have tried everything to help her. The diagnosis process took over two years. She has been diagnosed now for 20 years. I would suggest that all MS patients check out the website called Overcoming Multiple Sclerosis. Very helpful!! Tons of knowledge and a road map to natural healing and recovery.
Hi everyone. My sister is the youngest diagnosed MS patient in history. I have watched her suffer greatly as Dr's have tried everything to help her. The diagnosis process took over two years. She has been diagnosed now for 20 years. I would suggest that all MS patients check out the website called Overcoming Multiple Sclerosis. Very helpful!! Tons of knowledge and a road map to natural healing and recovery.
ballet1
Don't worry about being in hot water over on lymenet...it's just that so many people have poor vision,,and posting in paragraph form allows these folks the ability to read your questions.
Just like this site everyone over there is helpful, understanding and kind. And they certainly understand when a 'newbie" joins..:)
Don't worry about being in hot water over on lymenet...it's just that so many people have poor vision,,and posting in paragraph form allows these folks the ability to read your questions.
Just like this site everyone over there is helpful, understanding and kind. And they certainly understand when a 'newbie" joins..:)
I believe there is a Mayo Clinic in Florida. I personally didn't have a good experience at the Mayo in Rochester, MN, but I know they are still very good. They have MS and LD specialist there so you might check into it.
I'll be praying,
Carol
I'll be praying,
Carol
Thank you for all of your personal information. It helped me tremendously!! Now, I just need help finding,-or where to find, a Dr. who specializes in "Lyme Disease" as well as (later down the road), one who specializes in "MS" either in FL or around this state. Does anyone know of any "good" Dr.'s who might help me with these symptoms??
You are right when you said that the Dr.'s will order tests and then they will not confirm 'any' diagnosis or even if you have the confirmation,--here in FL they don't want to believe you!!?? Weird--huh?
Yes,--I've been to that Lymenetdotorg site and have posted same info. there too. Someone told me to space my words out more!Uh OH!! I didn't mean to "get into trouble!?!" my first day out!!(Haha!) just kidding!! --You know,--gotta keep that 'sense of humor' going,---right??
Thank s again for all of your information,--I do really appreciate it.
I hope all is going 'better' for you too---
Sincerely,
Ballet1
You are right when you said that the Dr.'s will order tests and then they will not confirm 'any' diagnosis or even if you have the confirmation,--here in FL they don't want to believe you!!?? Weird--huh?
Yes,--I've been to that Lymenetdotorg site and have posted same info. there too. Someone told me to space my words out more!Uh OH!! I didn't mean to "get into trouble!?!" my first day out!!(Haha!) just kidding!! --You know,--gotta keep that 'sense of humor' going,---right??
Thank s again for all of your information,--I do really appreciate it.
I hope all is going 'better' for you too---
Sincerely,
Ballet1
I just noticed your post:
If I can suggest,,,,FIND a doctor who is educated with Lyme Disease. Most doctors ARE NOT, and really no fault of their own,,,this is a political disease where LOTs of money is at hand.
Bottom line is you, the CDC states that Lyme is a clinical diagnosis! Period! another words tests for lyme are not reliable..and that includes a Spinal TAP,,lyme docs don't and won't order a spinal....they know Lyme is very difficult to find in the spinal fluid!
but, you mention that you do have Lyme,,and then wonder if lyme can STILL be causing your problems all these years later? the answer is YES...this bacteria is very very smart, it converts from a spirochete into a cyst form rather quickly...(this is the very reason lyme isn't easily found in our spinal fluids)
Many of us with this bacteria need more than a few weeks of antibiotics to eradicate this Tick-Borne Illness.
Lyme is the Great Imitator, actually research shows that it's very hard to differenciate between Lyme and MS.
I wish I could agree with your doctors advice about finding a "good" hospital, but I can't. These good hospitals won't "clinically" diagnose you,,they will give you tests for LD and you will more than likely test negative..When Lyme is in our systems more than a few weeks out bodies don't make antibodies------so we test NEGATIVE. The sickest of us go undiagnosed.
Again this is where a "specialist" in lyme will order tests AND clinically diagnose you.
Memory problems, feeling your in a fog are very very common lyme symptoms.
Would you consider posting your question on a Lyme site filled with lots of people who can offer their experiences along with helpful information?
lymenetdotorg
iladsdotorg
are 2 helpful places to learn about this tricky disease.
btw, I was diagnosed with MS years ago,,,but recently found I also have Lyme disease. I have decided to treat my disease with antibiotics and I am making great in roads. I too had a negative lyme test.(but with positive bands)...my MS symptoms were the reason I am now in lyme treatment.
I spent a year reading about lyme and I made the decision to find a "specialist" in Tick-Borne Diseases; just as I found a "specialist" for MS.
Hope this helps,
tory
If I can suggest,,,,FIND a doctor who is educated with Lyme Disease. Most doctors ARE NOT, and really no fault of their own,,,this is a political disease where LOTs of money is at hand.
Bottom line is you, the CDC states that Lyme is a clinical diagnosis! Period! another words tests for lyme are not reliable..and that includes a Spinal TAP,,lyme docs don't and won't order a spinal....they know Lyme is very difficult to find in the spinal fluid!
but, you mention that you do have Lyme,,and then wonder if lyme can STILL be causing your problems all these years later? the answer is YES...this bacteria is very very smart, it converts from a spirochete into a cyst form rather quickly...(this is the very reason lyme isn't easily found in our spinal fluids)
Many of us with this bacteria need more than a few weeks of antibiotics to eradicate this Tick-Borne Illness.
Lyme is the Great Imitator, actually research shows that it's very hard to differenciate between Lyme and MS.
I wish I could agree with your doctors advice about finding a "good" hospital, but I can't. These good hospitals won't "clinically" diagnose you,,they will give you tests for LD and you will more than likely test negative..When Lyme is in our systems more than a few weeks out bodies don't make antibodies------so we test NEGATIVE. The sickest of us go undiagnosed.
Again this is where a "specialist" in lyme will order tests AND clinically diagnose you.
Memory problems, feeling your in a fog are very very common lyme symptoms.
Would you consider posting your question on a Lyme site filled with lots of people who can offer their experiences along with helpful information?
lymenetdotorg
iladsdotorg
are 2 helpful places to learn about this tricky disease.
btw, I was diagnosed with MS years ago,,,but recently found I also have Lyme disease. I have decided to treat my disease with antibiotics and I am making great in roads. I too had a negative lyme test.(but with positive bands)...my MS symptoms were the reason I am now in lyme treatment.
I spent a year reading about lyme and I made the decision to find a "specialist" in Tick-Borne Diseases; just as I found a "specialist" for MS.
Hope this helps,
tory
There are no MS doctor's (Neurologists) that I know of, that will answer any questions on this particular forum.
As "needanswers" said, there is a special forum where you can write a specific question and a doctor will answer you. I cannot direct to that forum, since I don't know where it is. I am sorry that I can't be of more assistance.
Do you have any specific question that maybe I can try to answer? I only ask since I have been diagnosed with MS for 12 years and may be able to offer some of my experiences, so I can be of some help to you. Of course, I am not a doctor, only someone that lives with MS.
Take care honey, Heather
As "needanswers" said, there is a special forum where you can write a specific question and a doctor will answer you. I cannot direct to that forum, since I don't know where it is. I am sorry that I can't be of more assistance.
Do you have any specific question that maybe I can try to answer? I only ask since I have been diagnosed with MS for 12 years and may be able to offer some of my experiences, so I can be of some help to you. Of course, I am not a doctor, only someone that lives with MS.
Take care honey, Heather
Hi,
I like your "name!" Thank you for your concern and care in writing. It's called a "fluroscopy",--I will try to remember that,--I'm supposed to be going to Shand's Hospital,-but the Dr.'s are supposed to be all Neurologists??! I'm not sure if this is what I should be doing?-Any ideas??
I like your "name!" Thank you for your concern and care in writing. It's called a "fluroscopy",--I will try to remember that,--I'm supposed to be going to Shand's Hospital,-but the Dr.'s are supposed to be all Neurologists??! I'm not sure if this is what I should be doing?-Any ideas??
Hi,
Thank you for your concern,--yes,--I do have memory problems. Never used to--though.
Thank you for your concern,--yes,--I do have memory problems. Never used to--though.
There are no MS doctor's on this forum. So no one with experience treating MS is available to answer questions. This forum is just comprised of people with MS or persons going through the diagnosis process.
Yikes! I am praying for you! Yes, the doctors do sometimes read this, but there is a separate medical forum that you should try to post your questions on specifically for the doctors. Everyone here is very supportive, though. And we do have a person that is a retired doctor in the group.
If you get another LP I would considered fluoroscopy so that the physician can see what they are doing better. I have had several and the two with the fluoro were pretty easy. Take care, good luck, and God bless you!
Hope you can have a happy holiday!
If you get another LP I would considered fluoroscopy so that the physician can see what they are doing better. I have had several and the two with the fluoro were pretty easy. Take care, good luck, and God bless you!
Hope you can have a happy holiday!
Have you had tests for strokes? Balance, fatigue could be MS, but other things factor in too. I would go to other drs, if you can. It might not be MS, it could be something else. Do you have memory probs? Karina
Hi,
Do the Dr.'s in this forum ever read your diagnosis and comment on them?
Thanks for your help!
Do the Dr.'s in this forum ever read your diagnosis and comment on them?
Thanks for your help!
Thank you for responding. Noone has touched my spinal cord,-primarily due to the fact that I had a spinal lumbar puncture that ended up going "bad!"--I'm afraid of anyone (who doesn't know what they're doing), going into my spinal cord--you know? The last Dr. that did it; went through my spinal cord,--that was before ALL this other stuff took place. I was in bed for a month!
what what Iv'e read lyme can mimic ms all the way down to the lesions on the brain but Im not an expert on this. It sounds like a good idea of what your doc. suggeated of going to the hospital if you can afford it. good luck to you and Happy Theanksgiving. keep us posted.
april
april
yes,--I'm sorry I didn't mention that!--I do have Lyme Disease. Do you think this (from the year 2000 even up to NOW!,--could be due to:Lyme Disease? (I was getting chelation shots of liquid silver hydrosol intraveiniously),--but, would lyme Disease cause ALL these problems that 'shadow' MS??
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