Hello all, I am just about out of my mind with symptoms 24/7 and NO diagnosis. I am not a doctor but I swear, eveything I'm experiencing or have experienced points to MS. But since my spinal tap and MRI's are clear, I'm told we can't say it's MS. This is by an MS specialist - I've seen 2, they both say the same thing. He agrees I have many symptoms of MS but that he sees that all day long and it turns out often to be something else.
Here are my symptoms:
Optic neuritus - 4X (both eyes, never at the same time). Optic atrophy as a result.
Mild oscillopsia (a nightmare in and of itself)
Palms of hands feel like I'm wearing a stocking over them off and on.
Feel slightly drunk all the time.
Buzzing/purr sound in my head 24/7
ears feel full or plugged up....but they aren't.
Get even more dizzy upon exertion
hands feel stiff, swollen, hard to move
Thigh muscles tired/fatigued most of the time, can hardly workout anymore
Thigh muscles like to get stiff after the slightest attempt at working out
Dry eyes
Dry mouth
Hair loss (pretty extreme, all over head)
Also hair has turned brittle and breaks easy
Red face
Cold hands
Foggy head, hard to think many times, or even attempt to multi-task
Lump in back of throat/tight swallowing
I seriously fear I am going to lose it. It's becoming harder and harder just to do my job. (dizzy/fatigue most disabling)
This has been going on now for years. Things just sort of keep piling on and getting worse, never better (except the optic neuritis). I have been to every specialty out there....rheum, derm, ENT, endo, my bloodwork is always pristine.
Anyone else out there have these issues and no diagnosis?
WHAT IS IT!!!???
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CCSVIhusband
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MAYBE you should try an interventional radiologist ... (I know I'll get hammered for saying that)
From Steve's CCSVI diary ... http://www.msrc.co.uk/index.cfm/fuseact ... ageid/2996
Update 12/10/10
I got fed up waiting for Essential health and went to Poland.
They inserted TWO stents in my left jugular that was totally closed.
Anyway, my balance is back to perfect, my fatigue never returned, my face had been dry as hell for 18 moths and is now back to normal, I can actually hold a pen again and write (reasonably legibly).
Foot drop has not altered at all but its still early days, procedure was only done 3 weeks ago tomorrow.
Cheers
Steve
From Steve's CCSVI diary ... http://www.msrc.co.uk/index.cfm/fuseact ... ageid/2996
Update 12/10/10
I got fed up waiting for Essential health and went to Poland.
They inserted TWO stents in my left jugular that was totally closed.
Anyway, my balance is back to perfect, my fatigue never returned, my face had been dry as hell for 18 moths and is now back to normal, I can actually hold a pen again and write (reasonably legibly).
Foot drop has not altered at all but its still early days, procedure was only done 3 weeks ago tomorrow.
Cheers
Steve
Lost and confused,
I can only imagine how frustrated you must feel! I'm really sorry about that!
I know this will be a pain, but I honestly think you have to go to a couple more neuros--at least one more.
Maybe even one who isn't an MS specialist. It's certainly possible that your symptoms may not be from MS--and of course it's tougher to arrive at that diagnosis since your tests don't suggest it so far.
Don't give up on getting to the bottom of it. Someone out there HAS to be able to figure this out!
I wish you the very best of luck--and speedy answers!
I can only imagine how frustrated you must feel! I'm really sorry about that!
I know this will be a pain, but I honestly think you have to go to a couple more neuros--at least one more.
Maybe even one who isn't an MS specialist. It's certainly possible that your symptoms may not be from MS--and of course it's tougher to arrive at that diagnosis since your tests don't suggest it so far.
Don't give up on getting to the bottom of it. Someone out there HAS to be able to figure this out!
I wish you the very best of luck--and speedy answers!
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lostandconfused
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Thanks so much for the replies. I should have mentioned I've also seen 2 additional neurologists who are not MS specialists in between the MS specialists visits. One did not know but said whatever it was was out of his area (?) and the other decided I must have migraines!! Seriously. So I've chosen one MS specialist to stick with and I see him every 4 or 6 months, depending on what bodily crisis pops up but no diagnosis, no real help. He said steroids are reserved for acute problems which mine I guess are not "acute" enough. Just wait and see.
I'm going to set up an appt with a vascular doc. What can it hurt at this point?
Of all of it honestly this week the hair loss has me up in arms the most (crazy I know) but it's like if I have to feel to crappy do I have to look it too? I'm a young woman and my hair is the last thing I've got to cling to at this point.
Thanks for letting me whine.
I'm going to set up an appt with a vascular doc. What can it hurt at this point?
Of all of it honestly this week the hair loss has me up in arms the most (crazy I know) but it's like if I have to feel to crappy do I have to look it too? I'm a young woman and my hair is the last thing I've got to cling to at this point.
Thanks for letting me whine.
lost, hair loss can be due to iron deficiency anemia. have you had a ferritin test done?
many of your symptoms could be related to nutritional imbalances that are also seen in MS patients.
the nutrition approach may or may not appeal to you but if you're interested just say.
many of your symptoms could be related to nutritional imbalances that are also seen in MS patients.
the nutrition approach may or may not appeal to you but if you're interested just say.
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my symptoms were no where near as bad as yours and it still took three years to get diagnoses. Brain MRI's were clear for the first several years, there were lesions on my spine....now that has switched.
Where are you? maybe someone can suggest a competent and informed IR to check out your veins???
Ann
Where are you? maybe someone can suggest a competent and informed IR to check out your veins???
Ann
always look on the bright side of life
Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
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lyndacarol
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Lostandconfused –There could be many different causes for these symptoms that you mention. MS is a possibility, too.
You've listed an "endo" among the doctors you have seen. Did the endocrinologist order blood tests, specifically for insulin, cortisol, and the thyroid hormones? I know that an underperforming thyroid (i.e., low thyroid hormone levels) can cause hair loss or thinning of the hair, even thinning of the eyebrows. Has this been checked out?
You've listed an "endo" among the doctors you have seen. Did the endocrinologist order blood tests, specifically for insulin, cortisol, and the thyroid hormones? I know that an underperforming thyroid (i.e., low thyroid hormone levels) can cause hair loss or thinning of the hair, even thinning of the eyebrows. Has this been checked out?
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lostandconfused
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Thanks for the replies.
patientx: yes, I have a neuro=opthalmologist that see asap whenever I get optic neuritis. he is big on the optic neuritis treatmenet trials that say teroids don't change the final outcome so we just wait it out. usually takes 12 weeks to resolve itself as much as it's going to. He and my neuro, and the endo actually can easily see the optic atrophy - my nerves are pale. ;-( yet my vision (when things aren't jiggling about) is still 20/15.
jimmylegs: yes, I would take any help at this point. How high should my ferritin be?
msgator: I have been in contact with someone on facebook and now have some prety good ideas for IR's - thank you! Although it still seems weird to be approaching them with no official/firm diagnosis?
lyndacarol: My TSH, free T3 and free T4 have all been check (numerous times) and always fall within the norm. I know my cortisol was checked for sure. Not sure about insulin specifically - is that jus the glucose on the CBC?
patientx: yes, I have a neuro=opthalmologist that see asap whenever I get optic neuritis. he is big on the optic neuritis treatmenet trials that say teroids don't change the final outcome so we just wait it out. usually takes 12 weeks to resolve itself as much as it's going to. He and my neuro, and the endo actually can easily see the optic atrophy - my nerves are pale. ;-( yet my vision (when things aren't jiggling about) is still 20/15.
jimmylegs: yes, I would take any help at this point. How high should my ferritin be?
msgator: I have been in contact with someone on facebook and now have some prety good ideas for IR's - thank you! Although it still seems weird to be approaching them with no official/firm diagnosis?
lyndacarol: My TSH, free T3 and free T4 have all been check (numerous times) and always fall within the norm. I know my cortisol was checked for sure. Not sure about insulin specifically - is that jus the glucose on the CBC?
Have the doctors that you've seen ruled out Neuromyelitis optica (NMO)?lostandconfused wrote:patientx: yes, I have a neuro=opthalmologist that see asap whenever I get optic neuritis. he is big on the optic neuritis treatmenet trials that say teroids don't change the final outcome so we just wait it out. usually takes 12 weeks to resolve itself as much as it's going to. He and my neuro, and the endo actually can easily see the optic atrophy - my nerves are pale. ;-( yet my vision (when things aren't jiggling about) is still 20/15.
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lyndacarol
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Lostandconfused – to your question:
Insulin is produced by the pancreas in response to the glucose and is the body's way of handling glucose. Insulin removes glucose so that it can be used as energy in the cells or so that it can be stored as fat. It is my suspicion that when the body overcompensates and produces too much insulin, the insulin damages the blood vessels, which starts an immune reaction to repair the damage.
A fasting serum insulin test must be done soon after the blood is drawn (if the test cannot be done immediately, the sample should be frozen), otherwise the insulin degrades quickly and registers inaccurately. A desirable test result should be under 7.
Glucose and insulin are two different, but related, substances in the blood stream. Glucose (or blood sugar) has many different sources – in the diet, glucose comes most commonly from sugar or simple carbohydrates which convert readily to sugar. Too much glucose in the bloodstream is the definition of diabetes.Not sure about insulin specifically - is that jus the glucose on the CBC?
Insulin is produced by the pancreas in response to the glucose and is the body's way of handling glucose. Insulin removes glucose so that it can be used as energy in the cells or so that it can be stored as fat. It is my suspicion that when the body overcompensates and produces too much insulin, the insulin damages the blood vessels, which starts an immune reaction to repair the damage.
A fasting serum insulin test must be done soon after the blood is drawn (if the test cannot be done immediately, the sample should be frozen), otherwise the insulin degrades quickly and registers inaccurately. A desirable test result should be under 7.
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lostandconfused
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patientx: My spinal MRI's are "pristine" , although it is only a 1.5T, maybe I should push for a 3T. And my MS neuro did the blood test for NMO and it was negative. he said it is about 75% accurate, but that 25% of people with NMO don't have the antibodies so I guess like MS it can't ever be completely "ruled out".
lyndacarol: is this insulin test a typical test my GP would be familiar with? It's never been suggested. Or is this something an endo would know more about? You've peaked my interest as I find I feel pretty extra crummy after eating somethin high carb/sugary but my glucose is always within range on the CBC tests. Usually around 90.
Thanks you all!
lyndacarol: is this insulin test a typical test my GP would be familiar with? It's never been suggested. Or is this something an endo would know more about? You've peaked my interest as I find I feel pretty extra crummy after eating somethin high carb/sugary but my glucose is always within range on the CBC tests. Usually around 90.
Thanks you all!
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lyndacarol
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Lostandconfused – Your GP or internist should be familiar with the "fasting serum insulin test." There is no question that an endocrinologist would know all about it. It was developed about 1950; it has been generally available since about 1960.
I am not surprised that your glucose level is within the normal range. That indicates that your pancreas is producing enough insulin to take care of the glucose; the problem is that the pancreas always overcompensates. In some people that means that the glucose is lowered too much (which is called hypoglycemia). In the rest of us, once the glucose is reduced to normal, the excess insulin (hyperinsulinemia) does its mischief – damaging blood vessels, causing insulin resistance, thickening and stiffening the smooth muscles (these compose the walls of the blood vessels, these also surround the urinary bladder and intestines and their sphincter muscles are also smooth muscles – could this be the source of urinary and bowel problems in MS? I suspect this is the case.)
By the way, insulin can cross the blood-brain barrier (a body structure that you hear a lot about in MS!).
I am not surprised that your glucose level is within the normal range. That indicates that your pancreas is producing enough insulin to take care of the glucose; the problem is that the pancreas always overcompensates. In some people that means that the glucose is lowered too much (which is called hypoglycemia). In the rest of us, once the glucose is reduced to normal, the excess insulin (hyperinsulinemia) does its mischief – damaging blood vessels, causing insulin resistance, thickening and stiffening the smooth muscles (these compose the walls of the blood vessels, these also surround the urinary bladder and intestines and their sphincter muscles are also smooth muscles – could this be the source of urinary and bowel problems in MS? I suspect this is the case.)
By the way, insulin can cross the blood-brain barrier (a body structure that you hear a lot about in MS!).
Given that NMO is pretty rare, and your tests have come up negative, it seems to be very nearly ruled out.lostandconfused wrote:patientx: My spinal MRI's are "pristine" , although it is only a 1.5T, maybe I should push for a 3T. And my MS neuro did the blood test for NMO and it was negative. he said it is about 75% accurate, but that 25% of people with NMO don't have the antibodies so I guess like MS it can't ever be completely "ruled out".
I'm guessing that they've also tested you for infections, like Lyme disease?
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lostandconfused
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lyndacarol: As much as I loathe the idea of more blood being drawn from these pitiful veins....I will ask my GP for the test. What everyday symptoms would someone have that has a problem with insulin? If my results come back off, is that the same thing as saying I am a diabetic? Or what would it mean I should do about it? I have heard of a glucose tolerance test but not this. So glad you've brought it to my attention.
patientx: Yes, my GP out of frustration sent me to an infectious disease specialist just to be sure nothing was being missed. This ID doc was phenomenol, spent a lot of time with me and took 18 tubes of blood. All negative. I am certifiably not infected with anything. Unfortunately! That, at least, would've been an answer.
patientx: Yes, my GP out of frustration sent me to an infectious disease specialist just to be sure nothing was being missed. This ID doc was phenomenol, spent a lot of time with me and took 18 tubes of blood. All negative. I am certifiably not infected with anything. Unfortunately! That, at least, would've been an answer.