Hi, there. I was diagnosed with Idiopathic Intracranial Hypertension last year, meaning that due to an unknown cause, my cerebrospinal fluid pressure is too high. This causes some of the nerves around my brain to be compressed and creates a number of other problems, usually resulting in:
- High pressure headaches (full/achey/pressure kind of feeling, a bit like a sinus headahce)
- Papilledema (swelling of the optic discs, usually leading to visual disturbances and/or vision loss)
- Dizzy spells
... and a plethora of other issues that vary from person to person.
Now, what concerns me is that many of my symptoms overlap with those often described by MS patients, but I can't tell for sure because having high intracranial pressure can cause certain problems of its own. Not to mention, my condition itself could be a symptom of a lot of other things (hence, idiopathic.) Once a cause is found, it's not really idiopathic anymore, and it's referred to as Secondary IH. What I worry about is that what I am really suffering from is Secondary IH, and the cause of it is MS or something related.
Here are some of the symptoms I have that seem suspicious to me:
- Fatigue: I'm usually tired. Occasionally I have good days where I can make it, but most of the time I need long naps. The exhaustion usually starts around noon (though sometimes I have it as soon as I wake up) and continues to get worse throughout the afternoon until it's unbearable and I have to take a nap. By mid to late evening, I usually feel physically more awake again, though still sort of mentally drained.
- Odd sensations: I experience sharp stabs of pain (sort of feels like getting a shot) in my cheeks, fingertips, toes, and sometimes thighs. I experience tingling/numbness in my scalp, neck, face, fingertips, and occasionally calves. I experience burning in the top of my breasts, torso, and back. And I experience warm sensations in my inner legs and occasionally heels/ankles. All of this has been getting progressively worse over the past few years (started a few years back with mild fingertip tingling.) Also tends to happen in "episodes" of a few hours to a few days, usually coinciding with my other symptoms. The one thing that gets confusing with this, however, is my medication (Diamox) is known to produce tingling/numbness as a side effect. I began experiencing most of these things before Diamox, though, so I'm assuming that it exacerbates my symptoms.
- Weakness: If I'm tired, I'm usually weak, too. I feel heavy-limbed, and it's like I'm trying to walk through water. My neurologist said my muscle tone and reflexes are fine.
- Dizzy spells/balance issues: Occasionally I have dizzy spells where any movement around me throws me off and makes me feel like I'm going to take a tumble. I also have trouble staying up sometimes. Like, it feels like it takes effort to stand upright. This always coincides with my other symptoms, especially tingling episodes.
- Muscle fasciculations and jerks: I get small twitches all over my body. Occasionally I also shudder involuntarily, only I sort of jump. Usually starts at the base of my neck and causes my shoulders to jump and one or both of my arms to twitch.
- Cognitive problems: I have trouble with my memory a lot. Sometimes I can't recognize things or forget important information that I should have basically engrained into my memory. Also struggle at retaining new information sometimes, and sometimes can't comprehend speech/writing.
Those are the main things. What's weird is they all tend to happen in a pattern, and they seem to happen independently of symptoms caused by high pressure. For instance, my period always causes my ICP to rise, and I can tell because I start having eye pain and seeing sparkles from my papilledema, and sometimes experience pulsatile tinnitus. But a lot of the time, I go through these weird episodes where I'm having all of these weird symptoms at once, and yet there are no other signs that I'm having ICP. Additionally, my papilledema has significantly improved since I started taking Diamox, which means my ICP must be going down. However, most of my other symptoms have not shown improvement at all. I don't experience high pressure headaches or pulsatile tinnitus so much anymore, but all the other stuff is still there.
The tests I've had done include a CT scan, an MRI about a week later, another MRI about a month later, and then a lumbar puncture a month after that. Neurologist has also done basic testing (the finger to nose thing, testing my ability to distinguish the left and right sides of my body, walking in a straight line with one foot in front of the other, reflexes, pushing on my legs to test my muscle strength, etc.) Everything has come back normal. Now, I don't want to self-diagnose. I know there are a lot of things that can cause strange symptoms. But I also know that MS doesn't always test positive the first several times, and I worry because of the nature of my symptoms. Even my neurologist agrees that a lot of my symptoms are atypical of someone with IIH alone. Does it sound like I could have MS? What are your thoughts on this? Thank you for taking the time to read this enormous wall of text, I appreciate any insight or advice you might have. I'm just looking for answers. I don't want to settle for "idiopathic." I want to know what's causing my IH and why all these strange things are happening to me. I'm sick of being left in the dark.