SuzU
02-15-2005, 08:12 PM
Groan. I am SO beyond frustrated I can't BEGIN to say!
I went to a neurosurgeon today to look at the "syrinx" all of the neurologists have been claiming I have.
No shock here-he doesn't think it is a syrinx and thinks all of my many symptoms could be related to an atypical presentation of MS-which has not been dx'ed.
All of my other tests have been negative-you ready for this? Brian MRI, ssep, spinal tap, neuro eval-(except for brisk reflexes.)
When this "episode" began in mid-Dec I was having difficulty walking and getting up stairs and if I would squat down I couldn't get back up without a struggle. I also had severe heat intolerance, weakness in my shoulders and hands, tremors, swallowing and bladder symptoms.
Now, all I seem to have left are the hand clumsiness, and arm/shoulder weakness and widespread TREMORS which I hate.
I also now have a petechiae type rash that doesn't jive with an MS dx, so my doctor is pursuing that as well.
My question is-if this IS some sort of atypical MS, do my remaining symptoms have any chance of improving, or am I stuck with them? I'm wondering this because the weakness of the legs has gotten much better but the hands and tremors seem to be getting worse instead of better.
Any thoughts?
I've had five and 1/2 years of symptoms but still no dx.
I went to a neurosurgeon today to look at the "syrinx" all of the neurologists have been claiming I have.
No shock here-he doesn't think it is a syrinx and thinks all of my many symptoms could be related to an atypical presentation of MS-which has not been dx'ed.
All of my other tests have been negative-you ready for this? Brian MRI, ssep, spinal tap, neuro eval-(except for brisk reflexes.)
When this "episode" began in mid-Dec I was having difficulty walking and getting up stairs and if I would squat down I couldn't get back up without a struggle. I also had severe heat intolerance, weakness in my shoulders and hands, tremors, swallowing and bladder symptoms.
Now, all I seem to have left are the hand clumsiness, and arm/shoulder weakness and widespread TREMORS which I hate.
I also now have a petechiae type rash that doesn't jive with an MS dx, so my doctor is pursuing that as well.
My question is-if this IS some sort of atypical MS, do my remaining symptoms have any chance of improving, or am I stuck with them? I'm wondering this because the weakness of the legs has gotten much better but the hands and tremors seem to be getting worse instead of better.
Any thoughts?
I've had five and 1/2 years of symptoms but still no dx.
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SuzU
02-17-2005, 02:56 PM
I hear the crickets singing---anyone out there?
Just wondering how the usual recovery is from a relapse-is it gradual or you just wake up one morning and your symptoms are gone? Are there times when symptoms seem gone and then they return only to resolve later?
I need something to hold onto until I can get to the MS specialist and try to figure out what is wrong with me (if anything.)
Thanks in advance for your help. :wave:
LOL-I'm just noticing that this whole illness has caused me to "graduate" to a "Senior Member."
Just wondering how the usual recovery is from a relapse-is it gradual or you just wake up one morning and your symptoms are gone? Are there times when symptoms seem gone and then they return only to resolve later?
I need something to hold onto until I can get to the MS specialist and try to figure out what is wrong with me (if anything.)
Thanks in advance for your help. :wave:
LOL-I'm just noticing that this whole illness has caused me to "graduate" to a "Senior Member."
Kirstine
02-17-2005, 03:26 PM
I just wanted to say helllo you sounded so down and I just wanted to let you know that people care and are here for you, WOW Senior Member then when I am just a newbe!! I wonder how long that will be....
SuzU
02-17-2005, 03:43 PM
Thanks Kristine,
I'm afraid to say it has only taken a month or so for my promotion from "Newbie" to "Senior Member," since I've been frequenting these boards in hopes of getting some kind of insight into my problem.
Thanks for your kindness in writing me so I don't feel alone.
Blessings.
I'm afraid to say it has only taken a month or so for my promotion from "Newbie" to "Senior Member," since I've been frequenting these boards in hopes of getting some kind of insight into my problem.
Thanks for your kindness in writing me so I don't feel alone.
Blessings.
Arraicha
02-17-2005, 04:27 PM
I'm sorry you have to go through all that. Neurological disorders are so difficult to diagnose in the best of times, so when your symptoms are atypical, it's horrible.
I don't know if the recovery is the same for everyone, but in my case it's gradual. They slowly lose their intensity after a few weeks. This lasts a few months, until I can only feel them when I'm very tired. Then I stop feeling them at all.
How long it takes for the relapse to go away depends on the person and on the symptoms. My shortest relapse was 3 months for double vision. My longest was 7 months for L'Hermit's sign and numbness in my right side and my lower body. It probably would have lasted a few more months if not for a cortizone injection. Other people claim that their symptoms only last a week (which is pretty much the shortest time a relapse can last in order to be considered a relapse, according to my neuro) whereas others have progressive MS in which the symptoms never go away.
I really hope you feel better soon and receive some answer ASAP!
I don't know if the recovery is the same for everyone, but in my case it's gradual. They slowly lose their intensity after a few weeks. This lasts a few months, until I can only feel them when I'm very tired. Then I stop feeling them at all.
How long it takes for the relapse to go away depends on the person and on the symptoms. My shortest relapse was 3 months for double vision. My longest was 7 months for L'Hermit's sign and numbness in my right side and my lower body. It probably would have lasted a few more months if not for a cortizone injection. Other people claim that their symptoms only last a week (which is pretty much the shortest time a relapse can last in order to be considered a relapse, according to my neuro) whereas others have progressive MS in which the symptoms never go away.
I really hope you feel better soon and receive some answer ASAP!