Gavi112
02-28-2008, 01:41 PM
I am 46 yr old female and since my middle 20's I have had neurological symptoms mainly altered sensations all over my body and balance dizziness.
My symptoms have worsened alot over the years but I never lost any function or had permanent numbness anywhere.
6 yrs ago I had brain MRI which showed extensive demylienation accross top of brain, neurologist said he could not diagnose MS as I didn't have any of the classic symptoms such as optical neuritis etc. Another MRI 2 years later showed nothing had changed. Also the demylienation was not in an area that would cause my balance problems. I was also experiencing more and more pain in my spine , neck lower back etc. An MRi of neck showed herniated disc and arthritis which could have accounted for some of my symptoms.
I have been disabled and unable to work for past 7 years. I had an MRI of my thoracic and lumbar spine 4 months ago which showed degeneration and herniation of lumbar discs and a neurofibroma on T4. A further MRI with contrast confirmed the neurofibroma diagnosis but it is not pressing on anything and have been told I was probably born with it. My neck was scanned at same time and same results as 4 years ago.
I am told my spine is very damaged but nothing serious that is affecting the spinal cord!! In past 6 months my balance dizziness has improved but I am now getting severe nerve pain affecting both arms/hands/wrists and both legs lower/feet. I also have constant tender/tingling/itching patches moving around my body and on and off a feeling as if I am wearing a tight belt round waist/abdomen. I have had bowel investigations - normal. I am also experiencing severe stabbing lower back pain when I wake up in monring and am incredibly stiff all over.
I have had extensive blood tests yesterday inc all rheumatology liver kidheys esr and full blood count and completely normal.
My neurosurgeon says and i agree there is nothing surgically he can do.
It has now boiled down to its either spine related or a nerve condition and I am waiting for neurologist appt.
Does any of this sound familiar to anyone - sorry for the rant but having suffered for so many years just getting worse and worse and no nearer an exact cause .
My symptoms have worsened alot over the years but I never lost any function or had permanent numbness anywhere.
6 yrs ago I had brain MRI which showed extensive demylienation accross top of brain, neurologist said he could not diagnose MS as I didn't have any of the classic symptoms such as optical neuritis etc. Another MRI 2 years later showed nothing had changed. Also the demylienation was not in an area that would cause my balance problems. I was also experiencing more and more pain in my spine , neck lower back etc. An MRi of neck showed herniated disc and arthritis which could have accounted for some of my symptoms.
I have been disabled and unable to work for past 7 years. I had an MRI of my thoracic and lumbar spine 4 months ago which showed degeneration and herniation of lumbar discs and a neurofibroma on T4. A further MRI with contrast confirmed the neurofibroma diagnosis but it is not pressing on anything and have been told I was probably born with it. My neck was scanned at same time and same results as 4 years ago.
I am told my spine is very damaged but nothing serious that is affecting the spinal cord!! In past 6 months my balance dizziness has improved but I am now getting severe nerve pain affecting both arms/hands/wrists and both legs lower/feet. I also have constant tender/tingling/itching patches moving around my body and on and off a feeling as if I am wearing a tight belt round waist/abdomen. I have had bowel investigations - normal. I am also experiencing severe stabbing lower back pain when I wake up in monring and am incredibly stiff all over.
I have had extensive blood tests yesterday inc all rheumatology liver kidheys esr and full blood count and completely normal.
My neurosurgeon says and i agree there is nothing surgically he can do.
It has now boiled down to its either spine related or a nerve condition and I am waiting for neurologist appt.
Does any of this sound familiar to anyone - sorry for the rant but having suffered for so many years just getting worse and worse and no nearer an exact cause .
Sponsor
tarapags1107
02-28-2008, 03:54 PM
Sorry to hear about everything you've been going through for so long. I, myself am stuggling to get a diagnosis for the last 3 years. So do you have neurofibromatosis or just some benign form of the disease? Does your neurosurgeon think the neurofibroma can cause all the abnormal symptoms you've been experiencing? Hopefully you can get in soon to see a good neuro that will do some more investigations especially since you said that nothing serious is affecting your spinal cord but you are still experiencing symptoms. I would ask for a spinal tap to check for any other underlying conditions since your brain was positive for dymelination. Just because you don't have any evidence of lesions in the area responsible for balance doesn't mean that a cns illness like MS isn't present. The lesions may be too small to detect by MRI and it only has an 85% sensitivity. Do you know what strength the MRI machine was that you had your scan done on? If not, it should say it on your report and or films/cd. You can always ask the hospital or facility where you had it and they will let you know how strong it is. The reason I'm asking is because the new magnets available for clinical use are twice as strong as the older magnets and can detect I believe 30% more lesions on MRI. This might be useful in detecting lesions in the region of balance on your brain. Make sure you get it done with contrast to see if the disease is active or inactive. The lesions or "plaques" will highlight or enhance if you have ms in its active state. I have no plaques or lesions and am being investigated for ms, sarcoidosis, and vasculitis at this time. My spinal tap was the only thing positive plus a vitamin d deficiency and I have had alot of MS symptoms in the past. Good luck with your neuro appt and keep us posted~
Tara
Tara
Gavi112
02-28-2008, 06:36 PM
thanks Tara nice to have someone reply. The first brain MRI was 6 years ago the second 4 years ago but both done without contrast. Hopefully the neurologist will want another one done. I am not sure I would agree to a lumbar punture given the precarious state of my spine!
The neurofibroma is not the hereditary disease, I was told it was probably a one off as no others have been picked up on MRI of rest of spine and I know when they MRI your spine they take in alot of your body, as well as a friend of mine had lumbar mri and ended up having a kidney removed as the mri picked upa kidney tumour!!
My damaged spine complicated matters tremedously as irritated spinal nerves can cause some of my symptoms. MY GP is sceptical that its MS as I have no loss of function or permanently altered sensations which would be unusual in long standing ms.
HOpe neuro is a nice one!
The neurofibroma is not the hereditary disease, I was told it was probably a one off as no others have been picked up on MRI of rest of spine and I know when they MRI your spine they take in alot of your body, as well as a friend of mine had lumbar mri and ended up having a kidney removed as the mri picked upa kidney tumour!!
My damaged spine complicated matters tremedously as irritated spinal nerves can cause some of my symptoms. MY GP is sceptical that its MS as I have no loss of function or permanently altered sensations which would be unusual in long standing ms.
HOpe neuro is a nice one!
Bearygood
02-29-2008, 11:50 AM
Gavi, welcome. Good you're here as it seems you've gotten some bad information. The statement about Optic Neuritis is crazy. Although it is very closely associated with MS (and is actually how I began my diagnostic journey), it is far from fact that people with MS will ultimately experience this -- there are MANY people who have not had ON OR eye problems. Also, what your GP said is also not necessarily correct. By very definition, RRMS (the most common form, especially in those initially dxed -- it is possible to progress) is "Relapsing - Remitting". MS is a very individualized disease and it is impossible to predict almost anything! In regard to the lesions, there are things known in terms of correlation to symptoms but this too is not always by the book.
It's good you're going to a neurologist. Just in general, demyelination is ALWAYS at least suspicious for MS. Good luck and keep us posted!
It's good you're going to a neurologist. Just in general, demyelination is ALWAYS at least suspicious for MS. Good luck and keep us posted!
limpster
02-29-2008, 11:58 AM
Just wanted to added my 2 cents:) I was dx'd with MS without experienceing optic neuritis. I have had it since though. A lot of people have never had ON and still dx'd.
I think going to a neuro is a very good idea:D
I would also keep a list of sx's and take them with you.
Good luck and please keep us poste.;)
I think going to a neuro is a very good idea:D
I would also keep a list of sx's and take them with you.
Good luck and please keep us poste.;)
Gavi112
02-29-2008, 01:58 PM
Wow everyone thank you so much, nice friendly board here.
6 years ago I didn't even get to see the neurologist after my mri he just saw the scans and his report said lots of people have evidence of demylienation and it means nothing! he said the scans pick up things that medical science cannot explain. I later saw him and he was awful - very unfriendly and arrogant. When my GP said she would refer me I thought oh no but its a different name so fingers crossed.
Do any of you who have been diagnosed experience pain all the time somewhere. I have constant either aching or stabbing pains anywhere and everywhere on a daily basis as well as the prickling tingling itching in same areas.
6 years ago I didn't even get to see the neurologist after my mri he just saw the scans and his report said lots of people have evidence of demylienation and it means nothing! he said the scans pick up things that medical science cannot explain. I later saw him and he was awful - very unfriendly and arrogant. When my GP said she would refer me I thought oh no but its a different name so fingers crossed.
Do any of you who have been diagnosed experience pain all the time somewhere. I have constant either aching or stabbing pains anywhere and everywhere on a daily basis as well as the prickling tingling itching in same areas.
Bearygood
02-29-2008, 02:45 PM
Gavi, I don't but others do. Pain can be experienced with MS. Some patients have had doctors say it can't but I've read enough anecdotal experiences to know this is not the case! Also, I don't know if you have any pain in your face but this can also be caused by trigeminal neuralgia. To further confuse the issue, in some, TN can actually be secondary (caused by) MS.
taosdaphne
02-29-2008, 07:36 PM
Gavil, the back problems may very well complicate a DX of MS. I had a fairly crumpled spine after a bad accident 18 years ago, and was left w. horrible nerve pain. Doc at my lousy local hosp said take ibuprofen and wear this brace. 15 years later I was falling all the time, had spacicity, etc. Got the back fixed--but 2 yrs later was back to flling and walking like a drunk. My neurosurgeon took one look at me and sent me to a neurologist, who DXd MS in about a week,after an MRI and spinal tap. My specialist thinks I've prob. had it 15-20 years, but just wasn't manifesting itself much.
So I still have some back pain, but everyone thinks it's related to the MS and to my abnormal gait.
So hang in there. Fix the back and MS may bcome more apparent--or not.
Daphne
So I still have some back pain, but everyone thinks it's related to the MS and to my abnormal gait.
So hang in there. Fix the back and MS may bcome more apparent--or not.
Daphne