New to site. Will see rhematologist in July.

[3lazycats]

My doctor made the appointment with the soonest available.
I saw my regular doctor again today. It was actually a follow up appointment for my blood pressure. Which today was a terrible 146/97. So on bp meds I will go.
My "cold" symptoms are a lot better. But she looked in my nose and said it looks really swollen inside. And my ears have had fluid in them for four months now. (No infection, or pain or anything).
the absolute worst thing lately is fatigue. I feel like my body was meant for a 6-8 hour day. Not a 12 hour day.

[annekat]

My doctor made the appointment with the soonest available.
I saw my regular doctor again today. It was actually a follow up appointment for my blood pressure. Which today was a terrible 146/97. So on bp meds I will go.
My "cold" symptoms are a lot better. But she looked in my nose and said it looks really swollen inside. And my ears have had fluid in them for four months now. (No infection, or pain or anything).
the absolute worst thing lately is fatigue. I feel like my body was meant for a 6-8 hour day. Not a 12 hour day.

I'm glad things are moving along but still wish someone would keep you on some treatment between now and your rheumy appt. Unless it is quite soon. As for the blood pressure, yes, that is somewhat high, but it could be worse. I, too, would be concerned if it is always that high. But as you probably know, it can be higher in a doctor's office due to anxiety. She is the doc, not me, and is familiar with your history, so putting you on bp meds is probably a good idea. But I've had mine almost that high while in the office and not gone on meds. I have a bp monitor at home and use it sometimes. This morning when I was kind of worked up about something, it was 141/89 and then about half an hour later, it was 117/75. So I guess mine is sort of all over the place. I hear you on the fatigue. That should get better when you get some treatment, but most of us continue to live with it indefinitely. Keep us posted.

[3lazycats]

Oh man.
I have been generally healthy the last month.
But my ears have had fluid in them since I started "doctoring". And now I feel like my balance is off.
So of course I dr googled. And of course found this: Autoimmune Inner Ear Disease | Vestibular Disorders Association. In which wegeners is mentioned. My spirits fell.

July isnt too far away.
How many of you have ear problems?

[annekat]

I am getting email notification of your latest post on vestibular disorders of the ear but am not seeing the post here on the thread. maybe it will turn up soon. I looked at the link you posted and it is interesting. Yes, we have had many ear problems on here including blockage from inflamed eustachian tubes, or tubes that are too open, infections, balance and dizziness problems, and of course hearing loss that can either be permanent or can improve to a normal state eventually. I myself have permanent hearing loss, an eroded ear drum, and have had troubling cases of vertigo, which seems to have improved since the ear with the missing eardrum has grown a layer of skin over the hole leading into the middle ear. My ENT was always pretty vague about the causes of the vertigo and other problems, but did mention "debris" one time, as was mentioned in the article. It's also been shown via an MRI or CT scan that there is fluid in my mastoids, the porous bone area behind the ears. The ENT did not seem too concerned about that and said it had gotten absorbed into there from the fluid trapped in the middle ear. It all seems very vague and hard to understand. Some have enough permanent damage to the inner ear to need cochlear implants, though I have little understanding of those. Everyone is different, and I hope your ear issues can be reversed with treatment. This would be a reason to try to get a sooner appointment with the rheumy, or another doc to prescribe treatment. The longer one waits, the more damage can be done that can't be reversed.

[annekat]

Oh, now I see your post that I could only see in my email notifications has showed up for me in the thread. That delay doesn't usually happen and I wonder if it has to do with maintenance being done on the site. Anyway, I know others have had many ear issues and will probably respond. I need to do some more research to get a better understanding of words such as 'vestibular'. I'm a little too fried tonight to do it, though.

[drz]

Oh man.
I have been generally healthy the last month.
But my ears have had fluid in them since I started "doctoring". And now I feel like my balance is off.
So of course I dr googled. And of course found this: Autoimmune Inner Ear Disease | Vestibular Disorders Association. In which wegeners is mentioned. My spirits fell.
July isnt too far away.
How many of you have ear problems?

I had no problems recognizing my balance problems as being caused by my Wegs. My hearing disappeared in the right ear leaving me functionally deaf. I was already missing my middle ear on the left side from prior infections and and several operations. The balance problems seemed more pronounced on the right side. An MRI confirmed the presence of a granuloma on that side.

Like the link above on vestibular hypofunction describes: Bilateral Vestibular Hypofunction | Vestibular Disorders Association

Normal postural stability while walking requires the combined use of at least two of three sensory cues (visual, vestibular, somatosensory). Patients who have no vestibular function, therefore, will have difficulty when either visual or somatosensory (touch) cues are also significantly decreased (e.g., walking in the dark). Although balance may be poor, it is not known what the actual frequency of falling is for patients with BVL. One study reported that 70% of patients with BVH under the age of 65 reported falls related to their bilateral hypofunction and 58% of those 65 to 74 years of age reported falls related to their BVH.⁶

Since we need two senses visual, touch, or vestibular to maintain balance. My vestibular hypofunction and neuropathy impair two out of my three so I often feel off balance and tend to fall over if I close my eyes so I have night lights on to help avoid falls in the dark and tend to touch things whenever I walk to help keep my balance. A cane can help me walk straight but then I walk much worse when i stop using it so I try to get by without it most of the time. I also do fine if some holds my hand or touches me while I walk.

Vestibular rehab helped me a lot. Before then I couldn't drive safely since I got dizzy whenever I turned my head. As the article explains:

Another problem for patients with bilateral vestibular loss is the visual blurring that occurs during head movements. Almost 70% of all patients with BVH complain of oscillopsia even after a course of gaze stabilization exercises.⁷ Greater intensity of oscillopsia occurs in patients with absence of both inferior and superior vestibular nerve function. In addition to the subjective complaint, patients also have a documented decrement in visual acuity during head movements. Interestingly, several studies have demonstrated that the subjective complaints of oscillopsia does not correlate with the actual decrement in visual acuity during head movement.^5,8,9

I still stagger or side step a lot to avoid falls. I don't do the exercises anymore that i was given during rehab and generally feel OK. Maybe I just got used to the problems or else the symptoms lessened. I think a bit of both since I do have to be careful everyday to try not fall and have many close calls most days and some falls too. I guess it is just another of many adjustments to accepting my "new Normal" after Wegs and the damage it caused.

This article confirms what I have learned. Thanks for posting it.

[little sister]

Your symptoms are very similar to mine except my problems started very recently (December 2014). I was officially diagnosed in May and am on prednisone and will start rituximab infusions this Friday. Anyway, while you are waiting to see the rheumatologist more damage is being done. Call the rheumatologist back up and explain to the gate keeper that your doctor suspects GPA (granulomatosis with polyangiitis) which is a life threatening illness that can progress very quickly. Tell her you need an appointment ASAP. My daughter works in a doctor's office and she says they always have some slots open in an emergency. At the very least, ask to be put on a waiting list for if any appointments come open sooner. Also, try other rheumatologists. And have your referring physician call the rheumatologit's office to ask for a sooner appointment. I have been soooo lucky with my quick diagnosis and so much more. But my family pushed me to be assertive in making appointments. I was going to say I'm not trying to scare you, but if it helps you get seen sooner then I am. The reason I know how fast it can progress is that my sister was diagnosed the end of May.
In March she tried to make her appointment with the rheumatologist and couldn't get one until early June, several months away. In May her kidneys failed before she ever got to that appointment and she died in October.

[annekat]

Little sister, thanks for that. I'm sorry and sad about the loss of your sister. It doesn't happen that fast to that degree for all of us, but this shows us once again that it certainly can, and that delaying can be deadly. It's hard for me to fathom that doctors don't know this and don't bend over backwards, without being asked, to get patients the appointments they need. And if someone has actually been diagnosed, or it is in any way suspected that they may be, there is no excuse, it seems to me. Best of luck to you in your own treatment of WG/GPA. Keep us posted.

[drz]

Little sister, thanks for that. I'm sorry and sad about the loss of your sister. It doesn't happen that fast to that degree for all of us, but this shows us once again that it certainly can, and that delaying can be deadly. It's hard for me to fathom that doctors don't know this and don't bend over backwards, without being asked, to get patients the appointments they need. And if someone has actually been diagnosed, or it is in any way suspected that they may be, there is no excuse, it seems to me. Best of luck to you in your own treatment of WG/GPA. Keep us posted.

This is hard to comprehend that one couldn't get appropriate treatment in a timely manner here in the USA. Both my treating doctor and consultant at Mayo have reassured me several times they will see me ASAP if I have a serious flare or get me in to one of their colleagues. And they have done so. The local hospital and doctors would also provide immediate treatment and consult with the experts if I was unable to get to their places quick enough. I have used both services a few times already. Being on maintenance meds also tend to buy one some time in getting more aggressive treatment when needed.

[annekat]

This is hard to comprehend that one couldn't get appropriate treatment in a timely manner here in the USA. Both my treating doctor and consultant at Mayo have reassured me several times they will see me ASAP if I have a serious flare or get me in to one of their colleagues. And they have done so. The local hospital and doctors would also provide immediate treatment and consult with the experts if I was unable to get to their places quick enough. I have used both services a few times already. Being on maintenance meds also tend to buy one some time in getting more aggressive treatment when needed.

It sort of seems like it is the docs less experienced with WG who are more at fault here, out of ignorance, than the ones at places like Mayo. But even I have a doc who isn't experienced with WG, and who isn't even a rheumatologist, who was able to get me started on the proper meds as soon as I was dx'ed. That bought me some time during which it could be decided to refer me to someone else, consult with nationally known specialists, etc. And all the docs I've encountered here, whether the ENT, pulmy, or whatever, have been able to see me on short notice in a crisis. I don't know why rheumies should be any different, unless the crisis is not made clear to them, or their office staff is uninformed and unable to discern what is or isn't a crisis.