Not sure but wanted opinions

[salamandertom]

Hello,

My name is Sasha and I am new here. I am a 35 year old mother of five, and a full time college student in my junior year majoring in biology and minoring in chem (prehealth focus). My youngest son has complex medical issues, the most serious of which is a bleeding disorder called von Willebrand's disease - he has type IIa severe. This is complicated by the fact that he has severe pathological reflux and asthma, along with several other annoying side effects of those three things. When he has a bleed he must go to the ER and get infusions (via IV) of clotting factor to stop the bleeding. He has had 9 procedures/surgeries in his short 4 years. I am no stranger to hospitals, ERs or the "system" of specialists etc b/c of this.

Thanksgiving day I noticed my vision in my right eye was off quite a bit. It was in my central line of vision, and reminded me of a smear (but it was all darkish there) and it moved when I moved my eye. It also reminded me of an optical migrane I had had in the past, so b/c it was thanksgiving I went about my day.

Optical migranes, at least the two I had had, generally progress into seeing vivid colors and go away within a day. This was there when I woke up the next day. I take topamax for my migranes so I called the neuro when I read that topomax can cause blindness. He told me that it was highly unlikely b/c I was on it for over a year. BUT that what was happening to me was serious and I should see an opthomologist asap. So I went that day.

They suspected it was either serous retinal detachment or an optical migrane. Go home and come back in two weeks! When I talked to my neuro the following tuesday she made me go back to eye doc that Weds insistant it was not an optical migrane. Well, it was neither. THe eye doc was confident I had retro bulbar optical neuritis. They called my neuro and I had an appt the next day (this past thursday).

That neuro I saw was not my usual who is a PA (she specializes in migranes). I also did not see the one I like, I saw a new one. She did a smallish neuro assessment and looked at my eyes and ordered an MRI and MRA. I saw my PA later and she did a full neuro, and I told her about the numbness in my thigh. She ran a bunch of bloodwork.

All the tests came back normal, yet I still have increasing loss of vision in my right eye and loss of feeling in my right leg that is also progressing! My PA doesn't work on Friday. It took 3 phone calls until the nurse finally called me with the doctor's plan. To put me on oral steroids for 28 days! Now my PA had already told me to expect IV steroids so I was confused. But whatever.

I took my first 100 mg dose friday night. Sat morning I took the next. I had tachycardia within 45 minutes and was being rushed to the ER by my husband after the doctor ordered us to go.

ER runs MORE tests. ER doc asks me if I have MS. Now I have of course looked up optic neuritis and know it is strongly associated with MS. BUt the neuros are not talking about it so I didn't either. The nurse actually told me on the phone that *most* optic neuritis will show up on the MRI, but later the neuro on call told me that it not showing up certainly doesn't mean I don't have it at all!

Anyhow, ER doc is CONVINCED I have all the symptoms of MS and my tachycardia is a combo of the pred combined with the fact that my new bloodwork showed I have mild hyperthyroidism! Which can cause increase in heartrate. So their idea is the two combined are not a good mixture for me. (I am on a beta blocker too! Thank goodness!)

The ER doc had a NP in training there who was very excited to see my right eye as it will dialate when you shine light into it right now. LOL. I have looked at it too, it is pretty neat.

So, I am not seeing any improvements on the oral pred yet. My vision is still deteriorating and my leg is all the way numb and now it is going into my fingers too. Why aren't they talking to me about MS? Obviously I have symptoms. The ER doc recomended I get a second opinion asap!

Thank you for any advice.

[Alicious]

Wow, you have been through the wringer! I can't speak to all of this, but FWIW I was on a 25 day course of steroids staring at 80mg last month, and it took more than a couple of days for me to really notice some relief. I wasn't dealing with optic neuritis, but with weakness, spasticity, and numbness in my limbs. That's just anecdotal, however.

I think it's definitely time to gather your records and get a second opinion with a neurologist, not a PA (no slight to them) who will take a good, hard look at what is going on. Clearly something is wrong, and I agree you should go with the ER doc's recommendation on this one.

Someone here should be able to address the intricacies of MRIs and the appearance of lesions better than I, but was the MRI done with and without contrast? Was it just of the brain, or also part of the spine? I ask because my first MRI was my cervical spine due to my symptoms (including numb flesh crawling up my right leg, loss of fine motor control in my left hand), and that was where they found my first lesion. The next MRI of my brain, also with contrast, showed some lesions as well, but the symptoms I was experiencing are likely caused by the lesion on my spinal cord.

My full bloodwork took a couple of weeks to get back, not just days. Some was quick, but some of the odd stuff they check when investigating MS-like symptoms takes a good deal of time. For this reason I suspect that you didn't have the full "rule it out" MS workup.

Good luck, and please keep us posted! Also, many hugs to you as you deal with this and also work with your son's medical issues. It can't be easy, but he is so worth every second!

[msnurse25]

Sounds like you've had quite an ordeal with all of this! I also woke up with optic neuritis one morning and went to the ER, they told me it was a miagraine and gave me meds and sent me on my way. (I had already taken 3 Maxalt tablets for it without any improvement.) After a week of no vision in my left eye I decided to go to the eye dr. He was the one who told me I had MS and if I wasn't dx'd to prepare myself cuz it was coming. I then went to see a neurologist and he admitted for IV Solumedrol 1750mg x 5 days. After the first 2doses my vision had improved and by the time I was d/c'd it was back 95%. I will say that it's a much slower come back with oral steroids, so hopefully you start to notice improvement soon. Good luck and definately find a new neurologist!

[salamandertom]

Hi Alice, thank you for your reply! I didn't have all the bloodwork back, but I also suspect I didn't have a full "rule out" MS work up either. My SED rate was normal, so the lyme test most likely will be I am sure. My white cell count was high in the ER, but the ER doc said that always happens with steroids.

My MRI and MRA was with and without contrast. They did the carotoids in my neck, but not my C-spine or any other part of my spine. The neuro was not focused on my leg numbness at that point. My leg numbness is creeping downwards from my hip, not up my thigh like yours did. That is interesting.

When you would walk on it, would you say that it felt disconnected, or like you were walking on a wooden leg or something? I am having a very hard time coming up for words for all these new feelings I am having that I have never had before. Like right now my toes are numb, but not all the way numb - so they hurt a bit.

Yes, my son is definately worth it. If I am dx with MS, or anything chronic I will follow his example and learn to live with it with grace. He will have terrible, bloody days filled with poking and prodding and pain - but wake up the next day all smiles and just go on like nothing ever happened. He inspires me everyday to be a better, more productive person!

[salamandertom]

Sounds like you've had quite an ordeal with all of this! I also woke up with optic neuritis one morning and went to the ER, they told me it was a miagraine and gave me meds and sent me on my way. (I had already taken 3 Maxalt tablets for it without any improvement.) After a week of no vision in my left eye I decided to go to the eye dr. He was the one who told me I had MS and if I wasn't dx'd to prepare myself cuz it was coming. I then went to see a neurologist and he admitted for IV Solumedrol 1750mg x 5 days. After the first 2doses my vision had improved and by the time I was d/c'd it was back 95%. I will say that it's a much slower come back with oral steroids, so hopefully you start to notice improvement soon. Good luck and definately find a new neurologist!

Thank you! My neuro has assured me that we will change the plan if there is no improvement by Monday. I won't lie and say that your post doesn't take me aback as another confirmation that I really could have this dx (my aunt has been fighting MS for 12 years!), but I really do appreciate your response!!!

[KoKo]

Hello Sasha

Welcome to MS World!

I am a 35 year old mother of five, and a full time college student in my junior year majoring in biology and minoring in chem (prehealth focus). My youngest son has complex medical issues, the most serious of which is a bleeding disorder called von Willebrand's disease - he has type IIa severe. This is complicated by the fact that he has severe pathological reflux and asthma, along with several other annoying side effects of those three things. When he has a bleed he must go to the ER and get infusions (via IV) of clotting factor to stop the bleeding. He has had 9 procedures/surgeries in his short 4 years. I am no stranger to hospitals, ERs or the "system" of specialists etc b/c of this.

Gosh, you are a very busy person, with 5 children (1 with health issues), full time college student, and your own health issues.

That neuro I saw was not my usual who is a PA (she specializes in migranes). I also did not see the one I like, I saw a new one. She did a smallish neuro assessment and looked at my eyes and ordered an MRI and MRA. I saw my PA later and she did a full neuro, and I told her about the numbness in my thigh. She ran a bunch of bloodwork.

All the tests came back normal, yet I still have increasing loss of vision in my right eye and loss of feeling in my right leg that is also progressing!

Why aren't they talking to me about MS? Obviously I have symptoms.

I'm just guessing here, but maybe they're not mentioning MS because your brain images were normal and your neurological exam wasn't suggestive of MS?

Unfortunately, it takes more than symptoms for a neurologist to diagnosis MS. There is a diagnostic criteria that usually needs to be met before a diagnosis can be made. This normally involves more tests than an MRI, if the MRI is negative. Have you had an Evoked Potential, or an EMG? Also, a lumbar puncture may be ordered when there is not enough criteria met for a diagnosis.

Here is a link to info from the National MS Society on how MS is diagnosed:

http://www.nationalmssociety.org/abo...-ms/index.aspx

It sounds like you may need to be proactive and get a second opinion, especially since your symptoms are worsening.

Do you have another scheduled appointment with your neuro? It's wise to write all your symptoms down, and how they're affecting you, and take the paper with you when you go to see the neurologist.

Sorry that you have to go through this frustrating time.

Hopefully you can find some relief here in the way of support, knowing that you are not alone in your struggles.

Hope you can get the answers you need soon.

Take care,
KoKo

[salamandertom]

Thank you KoKo. I think the problem in my situation is that there are far too many doctors involved here with me. I am seeing both my neuro PA and the neuro (whom I dislike).

I am supposed to call tomorrow and let them know how I am doing. I was told if the symptoms were not improving then they would try another med to help alleviate my symptoms. I also don't think it helped that I was so close to a Friday either needing my meds and plan.

I am a busy person, but I really am one of those people that do better, perform better, under stress and strict parameters. After my son's dx I went through a rough time of not being able to accept it, but after that I was able to see all the great things that came from those terrible complex illnesses he suffers from. Not that I wouldn't trade all those lessons and insights, but I have grown as a human being because of my experiences as his mother, because of knowing him and raising him I will be a better person and so will my other children. I want to help other families which is why I am going into the health field.

[Alicious]

When you would walk on it, would you say that it felt disconnected, or like you were walking on a wooden leg or something? I am having a very hard time coming up for words for all these new feelings I am having that I have never had before. Like right now my toes are numb, but not all the way numb - so they hurt a bit

Below is how mine felt, but bear in mind that with MS or another neurological issue the symptoms and their sensations can vary widely.

My right leg flesh slowly went numb from the foot up (it actually went as high as my shoulder blade by the end, but didn't affect my right arm), but the leg itself worked fine and I could feel it as attached to my body--it was purely a skin issue. It also registered cold as burning hot. When the steroids began to work and sensation returned, I very much had the sensation of pins and needles and discomfort, in addition to it feeling wet or burning (mildly) in different places as the nerves came back on line, of you will.

My other leg had some spasticity and wouldn't work properly, but I could feel it. It just wouldn't work and I couldn't force it to walk normally.

When I lost the fine motor control in part of my left hand, it felt like a wooden hand, I suppose. Trying to apply lotion with it, for example, was like trying to do it with a doll hand or a hand that had the pinkie, ring, and middle fingers acting utterly numb like I'd slept on it wrong, only it never woke up (it's fine now).

I hope that with a fresh week approaching you can get some good answers, or at least a game plan, in order to figure out what the heck is going on. Whatever it is, I hope it is resolvable and minor, but no matter what, we're here.

[Redwings]

All the tests came back normal, yet I still have increasing loss of vision in my right eye and loss of feeling in my right leg that is also progressing! My PA doesn't work on Friday. It took 3 phone calls until the nurse finally called me with the doctor's plan. To put me on oral steroids for 28 days! Now my PA had already told me to expect IV steroids so I was confused. But whatever.

I took my first 100 mg dose friday night. Sat morning I took the next.

Hi Sasha:
I'm sorry to read that your PA wasn't working on Friday, because the doctor who prescribed the 100 mg of prednisone for optic neuritis has put you on a regimen that was warned against by the Optic Neuritis Treatment Trial (ONTT) back in the early 1990s.

The ONTT found that test subjects who were treated with 60 mg (relatively speaking, not that much different than the 100 mg you're taking) of oral prednisone for optic neuritis were more likely to have a second episode of optic neuritis than were subjects who were treated with 1000 mg of IV prednisolone for 3 days and those who weren't treated at all. The researches took the extra step of issuing a warning bulletin advising against the practice. Somehow, all of this time later, the doctor who wrote your prescription never got the message.

Your PA was correct. For optic neuritis, you should have been put on 3 days of 1000 mg of IV Solu-Medrol OR 1000 or 1200 mg high-dose oral prednisone OR nothing at all. According the the ONTT, your current low-dose oral regimen puts you at increased risk of another episode.

The ONTT showed that the final visual outcome is the same whether the episode is treated or untreated. Treatment only shortens the duration of the episode. There is about a 2-week time frame after the onset of an exacerbation where the steroids are effective in shortening the duration of the episode.

Because of that, some doctors (mine included) won't treat with steroids after two weeks. You're in the odd position of already being beyond the two weeks AND being on a treatment that is contraindicated.

You're also in the awkward position of having to tell a doctor that their treatment is not appropriate. So instead of just "calling to tell how you're doing," you would be doing yourself much more good to call your PA and tell him/her that you were put on a treatment for optic neuritis that was warned against and discuss whether you should have that remedied. This deals only with optic neuritis -- which you have been diagnosed with -- and has nothing to do with whether or not you have MS.

It sounds like you don't need another med, you first need the proper dose of the med you're on. Conversely, some neurologists go into almost overkill with more than 1000 mg IV or 5 or more days, but that isn't the protocol for optic neuritis. If there isn't any difference in final outcome between 1000 mg of IV Solu-Medrol and no treatment at all, it's hard to justify doubling the dose, which only increases the risks and side effects of the steroid itself for no extra benefit to the vision.

IF you can tolerate the higher dose, you can go on the protocol treatment of IV Solu-Medrol OR the updated equivalent of HIGH dose orals, which is 10 times what you're taking now. If you choose to continue with the lower dose of prednisone, bear in mind that you are at a statistically greater risk of having a second episode of optic neuritis. It might not happen, but you and your doctors -- everyone -- must be prepared for it happening.

It sounds like your workup and treatment were bungled a bit, so it really does look to be in your best interest to get another competent neurological opinion ASAP.

[salamandertom]

I went to see the neuro and the PA today and was admitted. I was supposed to get my first dose of IV steroids tonight, but for some reason they are waiting until tomorrow to start. I suspect it has to do with the tachycardia that showed up when they did my vitals last. I had taken 70 mg of oral pred spread out between lunch and b-fast before being admitted - so that is probably what is doing it. Anyhow, tomorrow I will get my first dose along with an MRI of my spine and neck.

The neuro was not at all in agreement with the PA about me getting tested further down the path of MS, but once she talked to me in *person* she changed her mind. I have started to have numbness in both sets of fingertips and toes. She has also referred me to an MS specialist and an opthoneurologist.

I dont care for being in patient, but stuff does happen faster. Can anyone tell me about the side effects of the IV steroids, I am really nervous.

[KoKo]

Hi Sasha

I went to see the neuro and the PA today and was admitted. I was supposed to get my first dose of IV steroids tonight, but for some reason they are waiting until tomorrow to start. I suspect it has to do with the tachycardia that showed up when they did my vitals last. I had taken 70 mg of oral pred spread out between lunch and b-fast before being admitted - so that is probably what is doing it. Anyhow, tomorrow I will get my first dose along with an MRI of my spine and neck.

She has also referred me to an MS specialist and an opthoneurologist.

Glad to hear that the doctors are trying to find out the cause of your symptoms. It's good that you will see the MS specialist and neuro ophthalmalogist too. At the least, other conditions can be ruled out.

Hopefully the IV steroid treatment will help. (I've never had steroids, so I can't share my experience with that)

Let us know what you find out, ok?

Take care,
KoKo

[Alicious]

Thank goodness they are now taking you seriously! I hate the idea of you having MS, but I hate the idea of you not getting the help you need even more. I am so glad you are getting some care and IV steroids, and hopefully you can get some real answers soon with the MS specialist and opthoneurologist, and if it's not MS, a direction as to what could be going on.

I've never had the IV steroids, but http://www.msworld.org/forum/showthr...light=steroids has some posts about what to expect.

Hang in there!

[destanie3]

Hello,

My name is Sasha and I am new here. I am a 35 year old mother of five, and a full time college student in my junior year majoring in biology and minoring in chem (prehealth focus). My youngest son has complex medical issues, the most serious of which is a bleeding disorder called von Willebrand's disease - he has type IIa severe. This is complicated by the fact that he has severe pathological reflux and asthma, along with several other annoying side effects of those three things. When he has a bleed he must go to the ER and get infusions (via IV) of clotting factor to stop the bleeding. He has had 9 procedures/surgeries in his short 4 years. I am no stranger to hospitals, ERs or the "system" of specialists etc b/c of this.

Thanksgiving day I noticed my vision in my right eye was off quite a bit. It was in my central line of vision, and reminded me of a smear (but it was all darkish there) and it moved when I moved my eye. It also reminded me of an optical migrane I had had in the past, so b/c it was thanksgiving I went about my day.

Optical migranes, at least the two I had had, generally progress into seeing vivid colors and go away within a day. This was there when I woke up the next day. I take topamax for my migranes so I called the neuro when I read that topomax can cause blindness. He told me that it was highly unlikely b/c I was on it for over a year. BUT that what was happening to me was serious and I should see an opthomologist asap. So I went that day.

They suspected it was either serous retinal detachment or an optical migrane. Go home and come back in two weeks! When I talked to my neuro the following tuesday she made me go back to eye doc that Weds insistant it was not an optical migrane. Well, it was neither. THe eye doc was confident I had retro bulbar optical neuritis. They called my neuro and I had an appt the next day (this past thursday).

That neuro I saw was not my usual who is a PA (she specializes in migranes). I also did not see the one I like, I saw a new one. She did a smallish neuro assessment and looked at my eyes and ordered an MRI and MRA. I saw my PA later and she did a full neuro, and I told her about the numbness in my thigh. She ran a bunch of bloodwork.

All the tests came back normal, yet I still have increasing loss of vision in my right eye and loss of feeling in my right leg that is also progressing! My PA doesn't work on Friday. It took 3 phone calls until the nurse finally called me with the doctor's plan. To put me on oral steroids for 28 days! Now my PA had already told me to expect IV steroids so I was confused. But whatever.

I took my first 100 mg dose friday night. Sat morning I took the next. I had tachycardia within 45 minutes and was being rushed to the ER by my husband after the doctor ordered us to go.

ER runs MORE tests. ER doc asks me if I have MS. Now I have of course looked up optic neuritis and know it is strongly associated with MS. BUt the neuros are not talking about it so I didn't either. The nurse actually told me on the phone that *most* optic neuritis will show up on the MRI, but later the neuro on call told me that it not showing up certainly doesn't mean I don't have it at all!

Anyhow, ER doc is CONVINCED I have all the symptoms of MS and my tachycardia is a combo of the pred combined with the fact that my new bloodwork showed I have mild hyperthyroidism! Which can cause increase in heartrate. So their idea is the two combined are not a good mixture for me. (I am on a beta blocker too! Thank goodness!)

The ER doc had a NP in training there who was very excited to see my right eye as it will dialate when you shine light into it right now. LOL. I have looked at it too, it is pretty neat.

So, I am not seeing any improvements on the oral pred yet. My vision is still deteriorating and my leg is all the way numb and now it is going into my fingers too. Why aren't they talking to me about MS? Obviously I have symptoms. The ER doc recomended I get a second opinion asap!

Thank you for any advice.

i am 40 and also have vonwillo brands as do 2 of my 5 children,its very scary,now my oldest daugther 22 was told she has ms,i am sorry for all your going through and wish you the best,dont give up and go for as many opinions as necessary to get the best help

[salamandertom]

hello,
It isn't often to meet someone with vWD, but to know someone with both vWD and MS - that is extrodinary. I have since posting this in December been diagnosised with MS. What type of vWD does your daughter have? I have type I mild but my son has type IIa severe.