hi, I'm Aim. I have had several episodes over the years of different things and because we have moved 6 times in 12 years (for my hubby's career) not anyone doctor has my total medical history. In my 20's I suffered from several bouts of UTI's with issues of bladder control which has gotten worse as I have gotten older. Each of my pregnancies were awful and I was quite sick with headaches and vomiting. (the whole time; I was on IV's at home with Zofran for #3 with the doctor telling me not to have anymore children) I had a DVT at 36; probable but never tested urticaria vasculitis at 38 (hives that bruised) I was in the ER and the Dr felt I had Lupus. (ANA negative) So that diagnosis went no where. At 40 I had double pneumonia.
I have had pain in my jaw that starts near my ear and goes straight down the jawline. (all on my right) I have tingling and numbness in my extremities (sometimes my hands, sometimes my feet, sometimes its just one side like my right arm and entire leg or I've had it in just one knee. I am on Vitamin D and B12 for deficiencies.
Back in November 2013 I started having issues with a cold that just wouldn't go away....with a post nasal drip. I tried Flonase and then Nasonex. (I had been on Nasonex for a while and then the insurance company stopped paying for it in October of 2013)
Symptoms continued to worsen. I went through 4 doctors and no help. (one was an ENT) I had headaches, spots in my vision that were intermittent, also hearing loss that was intermittent, a whooshing in my ear and ear and eye pain (all on the right side.)
I finally left the state and was diagnosed with idiopathic intracranial hypertension with papilledema in the right eye only. But other symptoms that I can't imagine are part of the IIH continue. My Opening Pressure was 25 and I was feeling fair that day. But not too long after seeing the neurologist and the ophthalmologist I had bouts of blurring vision and double vision. I stopped taking the Nasonex after finding out that it could possibly cause IIH but no confirmed studies. I started feeling better but I had double vision last night and the tingling, burning in one or more extremities continues. I have even had times where my legs have given out on me while walking at the store. And the fatigue is a bear.
Did anyone else get diagnosed with IIH prior to MS? I am now seeing a NO about an hour from where I live.....he's sending me for a sleep study.....and then we move on if nothing is found. He's great but I'm nervous.
Hi. Welcome to the community. I hope you find some good answers soon and that you'll be feeling better.
I was sent to a neurologist because it was thought that I might have MS. He sent me to a neuro ophthalmologist because of my visual symptoms and he found that I have papilledema. The neuro ophthalmologist thought it would be caused by IIH, but I had an LP and I think the pressures were normal. 16 opening and 19 closing. I don't know if something could have been done wrong or not at the right time to catch it because I thought I read that CSF pressure fluctuates throughout the day.
Hi. Thank you. :) I'm also sending lots of good thoughts your way. Bless you. Are you seeing another doctor for your other symptoms? Does the neuro ophthalmologist have anything to say about them?
I seem to share some of the same symptoms as you're having. With my papilledema I do have blurry vision and have had double vision along with other visual symptoms. The neuro ophthalmologist wanted me to have the LP first before he would give me medication, but my pressures were normal so I'm at a loss for what the cause is.
Hi Invida, I hope you are well this am. (it's early here but I woke up and can't sleep.) there are several things this could be....you should have a complete blood work up and an MRI, MRV to rule out several things. I hope your doctors are keeping up with this since your OP was low.
As for me I have tried to get doctors to listen to me but they don't. I am frustrated. I am suppose to be going for a sleep study soon but the dr's office handling it has not called me to set a date. As for my NO he seemed concerned and said he would like to repeat my LP later. I said I would see him in October and his response was, "or before if you need me." So I was thankful that I have that option.
I am sending good thoughts and prayers to you, blessings, Aim
We often talk about MS having many mimics, those alternate conditions that produce the same or similar sx's that are also associated with MS. From my understanding, papilledema is the most common cause of swelling of the optic nerve but the 'similar yet different' condition that's connected with MS would be Optic neuritis.
Primary symptoms of papilledema are things like headaches or migraines, various visual issues, nausea, pulsating sounds, dizziness etc, which are what you've mostly experienced and it is highly connected with intracranial hypertension. Idiopathic intracranial hypertension with papilledema is commonly seen in women with weight issues, which 'maybe' a direction to consider in the grand scheme of things.
The pain in your ear and down your jaw line could be what's called Trigeminal neuralgia (TN) and whilst TN is also connected to MS it could be a secondary issued caused by the inter-cranial hypertension. see........
Your also currently dealing with vit B deficiencies, which can also mimic some sx's similar to MS, simply because fatigue, tingling, weakness etc are commonly associated with a few different vit deficiencies. I think at the end of the day (yes its taken me hours to write this lol), the most significant direction to follow in my mind, would be your intracranial hypertension with papilledema.
Idiopathic basically means unknown causation and if you look at into 'all' associated medical conditions eg diabetes or pre-diabetes, heart conditions etc and follow every clue, it's quite possible that all the diagnostic evidence will eventually point towards one specific underlying condition.
ps i've looked through every piece of MS visual research i've ever had, and so far i haven't been able to find any connection to MS and intracranial hypertension with papilledema.
Hi, Aim. Thank you so much. I pray you're having a great day today even though you're going through a lot of frustration with your doctors. I can completely understand that feeling and I hope you won't have to endure too much of that. Thank you also for reaching out to me. I really appreciate it.
I think that's good advice about possibly following the clues from your IIH and papilledema to an underlying condition. Have you noticed any significant changes after you were put on pressure medication?
It's good that you have a neuro ophthalmologist who is concerned and willing to be there to treat you. You need at least one doctor on your side. :) I'm not the happiest with mine. He had me go for an LP, but nobody ever mentioned anything about a followup appointment and I had to call their office over a week later just to ask what was going on.
Hi Invida, I hope you are well. Sorry to hear about your doctor issues too.
I hope you get them worked out. Finding the right fit is important. Not all personalities work well together. Do you have the option of finding another NO. I know that Toledo has 2 and I think U of M has a few (not sure where you live) I just hope you find what you need. Blessings to you Aim
I am in the medical field and worked Neuro ICU for about 8 years. Though I am reading up and researching numerous studies on IIH and MS. I came across a case study from the University of Utah that talked about 3 patients that had both MS and IIH. I have tried to find it again but was hoping that someone out there would respond that they were diagnosed with both.
As for the papilledema mine is resolved since I found a study on the FDA's website that showed patients that had papilledema from the use of Nasonex which is a steroid. I stopped using it. I showed it to my NO and he was receptive. I no longer have headaches but I continue to have eye pain without paps. The worst symptoms though have been the tingling which has been with my hands sometimes a finger, my feet or just one toe then also on my face and wraps around my neck; it feels like someone is squeezing it.
I stumble a lot. I drop things a lot and I get overly emotional. I get confused easily and I have garbled my words. I am hoping the sleep study will show something and that all of this will go away including the short term memory issues.
As for the vit B 12 deficiency it doesn't make sense because I eat plenty of meat, eggs and cheese and now take a supplement. So I have a hard time thinking it's from vit B12 at all. I was just told to take it to try to relieve the tingling, it has not.
During the time prior to seeing my NO I had symptoms of ON. My eyes hurt during movement; (now that the paps is gone and the headaches too my eyes still hurt and I have double vision.) I was excited that he said my paps was gone but he still seem concerned because the optic disk was flat. I had not ever heard that term before and really didn't find anything on google.
All I know is that I am grateful for finding a doctor who is listening to all the symptoms and not just the ones that pertain to IIH.
Thank you for responding to my post. I hope you have a good night.
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