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7 years undiagnosed??
I am 32 year old female and can't seem to find the answer to my condition. I have been diagnosed with Grave's Disease(in remission for 6 years),Fibromyalgia,and Pseudotumor Cerebri(with abnormal CSF test results (elevated total proteins,elevated IgG Index and elevated CSF IgG Synthesis rate and 2 oligoclonal bands present in the far gamma region)).I suffer from daily headaches,neck pain, mild muscle and joint pain mostly in legs, I have a constant buzzing feeling in arms and legs (worse when anxious and more noticable when at rest),and I have strange visual wierdos(like snow and squiggly sperm-looking flashing lights)I have several other symptoms but I have had them for so long I don't know if it just part of getting older so I try and stick to the most annoying ones. When symptoms first started the ran MRI and EMG and several bloodwork and all came out normal except CSF and CSF pressure was elevated. The doctors said possible early signs of MS.I have been living these past 6 years thinking I have MS and was OK with it. I had my first child and everything went great so I decided to re-check MRI and CSF testing for lesions and the doctors said the MRI is clean and you don't have MS. They said with CSF results being the same (not better not worse) as they were 6 years ago and still a negative MRI it can't be MS. And now they are stumped and can't figure out what could be causing all these symptoms and test results, they tell me that we'll have to wait and see if they get any worse (as if 7 years isn't long enough).I want to have another baby but now I'm afraid.Any comments?
Lupus, and some other autoimunne diseases can cause neurological problems. In fact Neurological sypmtoms are the first markers of Lupus in some people. Check out the list at this link, and see if this sounds like you.
http://www.uklupus.co.uk/lsymp.html
These are the official markers for Lupus.
http://www.uklupus.co.uk/dxlupus.html
Also, here is a link of tests for Lupus, and other autoimmune diseases. You can see if you've had any of these done.
http://www.uklupus.co.uk/tests.html
Keep in mind that many autoimune diseases overlap. It may not be Lupus, but if you have very many of the symptoms on the list, it would be a good idea to look further at other diseases in the same family.
http://www.uklupus.co.uk/lsymp.html
These are the official markers for Lupus.
http://www.uklupus.co.uk/dxlupus.html
Also, here is a link of tests for Lupus, and other autoimmune diseases. You can see if you've had any of these done.
http://www.uklupus.co.uk/tests.html
Keep in mind that many autoimune diseases overlap. It may not be Lupus, but if you have very many of the symptoms on the list, it would be a good idea to look further at other diseases in the same family.
I believe the doctors have ruled out autoimmunne(Lupus)diseases but the Csf results say a central nervous system disease . Are there any autoimmune CNS diseases that can give those type of test results? I have headaches,neck pain,and the visual wierdos 24/7. All though they are worse at night and in the morning. I also had papildema 6 years ago and was treated with Diamox for a year and it went away and they said I was in remission even though I still had the headaches,neck pain, and visual weirdos. So they told me it was stress related until last month when I had another spinal tap and the pressure was slightly elevated and they took 2/3 of it out and I was headache and neck pain free for one day and then the pressure went back up. So now the doctors say my symptoms are from the elevated pressure. But that I don't have Pseudotumor Cerebri because you have to have normal test results of the CSF. So now they don't know what is causing the problem.
Hi,
I'm sorry to hear of your problems. Except for the thyroid problems I've also had pseudotumor cerebri (12 years ago) plus I have fibromyalgia and chronic headaches. I have a lot of the symptoms you mention...the visual snow and squiggly visual stuff. This usually happens at night when I wake up from sleep. Do you get your visual distortions during the night or day or both? My pseudotumor was supposed to have been cured but I'm wondering if I still have it. I took medications for a month and when I had my eye check after that my retina was normal (I had papilledema before)so the neuro. pronounced me cured. I have other symptoms like throbbing in my head and ringing in my ears and dizzy spells. I don't know what to tell you. I also had an MRI and there is no evidence of MS. If they don't find it on the MRI it probably isn't MS.
I'm sorry to hear of your problems. Except for the thyroid problems I've also had pseudotumor cerebri (12 years ago) plus I have fibromyalgia and chronic headaches. I have a lot of the symptoms you mention...the visual snow and squiggly visual stuff. This usually happens at night when I wake up from sleep. Do you get your visual distortions during the night or day or both? My pseudotumor was supposed to have been cured but I'm wondering if I still have it. I took medications for a month and when I had my eye check after that my retina was normal (I had papilledema before)so the neuro. pronounced me cured. I have other symptoms like throbbing in my head and ringing in my ears and dizzy spells. I don't know what to tell you. I also had an MRI and there is no evidence of MS. If they don't find it on the MRI it probably isn't MS.
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