idiopathic intracranial hypertension(need any info would be grateful)

[dchandler7]

looking for a diagnosis, I have all sorts of terrible symptoms over the past 4 months basically in bed is my head. The problem I have is my neurologist is afraid to do a lumbar puncture is it intracranial pressure, nut I need to know if it or an infection or whatever because my health is deteriorating FAST. I am wondering how anybody with this condition got diagnosed, and what symptoms you had beforehand treatment and were careful about doing things like being active? I cant even go to the store without terrible symptoms or anything active..if we talk I''share,and info you grateful appreciated and who knows might save my life

[SnazzyD]

Hello sorry you’re having such a stressful time chasing a diagnosis. GCA doesn’t have a specific test other than a biopsy which has a high enough rate of false negative results that they still treat someone with convincing symptoms even if it is negative. My biopsy was negative as were my blood tests for inflammation but my symptoms responded really well to steroids within 2 hours. So am I right in thinking thinking your Neurologist thinks a lumbar puncture is too risky? If so, what else are they doing instead? To my logic, if they think there is something going on that’s serious enough that they would do a lumbar puncture but it is too risky for some reason, then other diagnostic means need to be found. If there is any risk of infection, I wouldn’t want to be pushing for steroids without some other treatment to protect from the infection too. It is quite possible this isn’t GCA and TIA’s are not usual with this.

[dchandler7 in reply to SnazzyD]

thanks for the reply, neurologist i afraid to do it, because she is afraid it is intracranial pressure and would make things worse. nothing shows on mri and CTA of head. she is ordered another mra with dye of head and getting second opinion. My calf has been aching and now burning for 6 weeks now and right calf started and left leg is weak, and other parts of body starting to ache lately, all i do is basically lie down. I was good shape before all this, are these signs of PMR?

[PMRpro Ambassador in reply to dchandler7]

Strange - an LP is sometimes done as part of the diagnosis of raised intracranial hypertension and to relieve the pressure.

However - no, none of what you describe is usually associated with PMR.

[dchandler7 in reply to PMRpro]

thanks for the reply, i think she is afraid if it is low-pressure headache, sounds so innocent when she first described, but ugg

[Grants148]

sorry that you are feeling so ill,l am not able to advise you but hope that things will get better for you very soon xx.

[piglette]

If you think it may be GCA perhaps you should also see a rheumatologist. Do you have any of the following, headache, head painful to touch, vision problems, jaw ache when eating? These tend to be the symptoms, also a possible raised CRP or ESR blood test.