Idiopathic Intracranial Hypertension & Wht Matter Lessions

[redynred]

I recently had my second MRI done and the "Flair imaging shows tiny white matter lessions" these were not there at my last MRI just 5 months ago when I was first diagnosed with IIH.  However, just recently the 3000 mg of Diamox I take a day has not been working as well and I have been having increased pressure/head pain. Among the normal nasty symptoms I am having some other weird symptoms I did not have before like when the pressure increases alot I have an instant sharp blow to the head that sends a sharp pain to my neck or back and my legs turn to jelly. My legs and feet also turn bright red. This has happened only a few times but I've noticed other neurological effects like suddenly I won't be able to think of a word or even concentrate on talking or I just zone out. So my question is.... I know white matter lessions are more common as you get older (I'm 47 so my Dr. says its because I'm getting old!).... Is it possible....(since I had no lessions 5 mos. ago) ...that they could be appearing from pressure the IIH is causing in my head???  Especially considering I seem to be having some intermittant but not permenant neurological symptoms???    

[Cath278]

Hi. I also have IIH and suffer different neurological symptoms, depending on how high my pressure is.

I have , for the most part, the usual symptoms associated with IIH, headache, nausea, vision problems etc but when my pressure is high, I cant speak properly if at all. It usually starts when I am over tired.At first , I say the wrong words, then start to slur my words untill I cant remember how to talk.
The first time it happened the drs thought I was having a stroke but after testing found I hadnt. It seems, the extra csf had lodged over the place in my brain which controls speech. If I rest and stop trying to talk, which is very stressful and frighting, it all comes back. It can last 10 mins or 3 hrs. I also fall over much more when pressure is high. Always to the right!

I hope this reassures you, that even tho IIH has many, many symptoms and problems, it does not always mean, damage to our brains is being done. Cath 278.

[selmaS]

Hi..wondering if there is an issue with BP....as the red legs and feet seem to indicate some type of pooling of blood in the extremities....

Look into the condition POTS-Postural orthostatic tachycardia syndrome.

IIH is also in the related condition chiari malformation...it is possible to have both....or to develop IIH after PDF surgery for chiari....so many of the symptoms do sound familiar.

And I know there r many issues with similar symptoms, but no relation to each other...which is y it can be a long road to a dx.

Hang in there and keep pushing for answers : )

"selma"

[Dr. A. Srivastava]

Hi, Thank you for your question. There can be many possibilities in your case that involve the brain white matter, either exclusively or in combination with grey matter changes. These include metabolism errors, exogenous toxins released by virus, autoimmune disease, leukodystrophy, demyelination, and radiation effects. Spasticity, muscle weakness, paralysis, hyper-reflexia and movement disorder may be the clinical features associated with white matter disease that need to be evaluated thoroughly. However, it is sad to say that there is no permanent cure but conservative treatment & physiotherapy exercises that would help you to regain your normal function and stopping the further progression of the disease. Please consult a neurologist in this regards. Hope this helps.

[rumpled]

It may be.

I found this:
"We describe a 35-year-old woman with benign intracranial hypertension (BIH) secondary to systemic lupus erythematosus (SLE). She had low grade fever and skin eruptions, but neurological examination revealed no abnormal findings. Antinuclear and anti ds-DNA antibodies were positive, and complements were decreased. MRI demonstrated diffuse hyperintense white matter lesions on T2-weighted imaging. Mild bilateral papilledemas developed in the fundi, when her headache was exacerbated. The cerebrospinal fluid (CSF) pressure was 550 mmH2O. Cerebral angiography showed no cerebral sinus thrombosis. She was diagnosed as BIH secondary to SLE. Since RI cisternography revealed remarkably delayed absorption of the CSF, it was speculated that the CSF absorption by arachnoid villi would be probably disturbed in association with some autoimmune mechanisms by SLE. The subsequent rise of intraventricular pressure may result in retrograde transependymal flow of the CSF and the diffuse hyperintense white matter lesions on MRI."

Now, you may not have lupus, but the medical article can show that white matter lesions can be related to the IIH. White matter lesions, if you look them up can be from headaches to so many things - but er, not being old. That was not the best answer. There are obviously changes, and so I would go and get some changes - it is not being old. You need to get the pressure under control. Perhaps the doctor is too old - and so maybe you need to consider getting a young one that can think? You have symptoms - it is worth looking into. Journal, and be persistent. Also keep copies of your own medical records (it appears you do that already).