[barb02]

On Sunday afternoon, I began to feel like I was having an allergic reaction -- similar to the feeling I had during my last tysabri infusion but not quite as bad. I was coughing for a few hours and then felt as though I was having trouble breathing (tightness across throat and top of chest). I finally took a benadryl and decided to go to the ER. When I got there they checked my vitals (all were fine) and told me I may have a 4 to 5 hour wait. I waited 1/2 hour, coughing had stopped, checked myself out, and went home and took another benadryl.

On Monday I went out to my local clinic and saw a nurse practioner. PCP is on vacation. They gave me a breathing treatment (did not seem to make a difference), she said she thought I had a sinus infection based on my stuffy nose and some fluid behind my ears, and wanted to presribe an inhaler for breathing even though I was not wheezing and oxygen level was 98%. I explained that I did not think I had a sinus infection; was stuffy due to taking all of the benadryl and the spring season. I am not exhibiting any of the other signs of a sinus infections. I also mentioned the possibility that I could be reacting to the tysabri or I could be exp the ms hug (already have it in my rib cage), but she just looked at me. She had no idea what I was talking about. She prescribed an antibiotic anyway and I thought it would not hurt to take it.

When I got to the drugstore the pharmacist told me that there was a 10% chance I could be allergic to it (related to penicillin -- I am very allegic to it).I am really glad she caught it. So I called the nurse practioner. Her nurse called back 5 hours later, said she knew that there was a chance of an contradiction but that I am running out of options due to allergies.(also allergic to sulfa). So I told her I was not taking a drug that could cause anaphylaxis reaction; especially since I was not convinced I even need an antibiotic.

I have to wait until Monday now to see my pcp. He does not prescribe antibiotics unless it is clear that you have an infection. He is also the doctor that dx my ms prior to my neuro. I was supposed to see him tomorrow, but they just called and said he would be out of the office. They wanted to know if I wanted to see someone else. I said no, "I already tried that." I am afraid he is interviewing. This clinic (part of an HMO) has been losing alot of doctors.

Sorry for the long post. Health care in this country sucks. I am fortunate becasue I have good insurance. I felt sorry for all of those people sitting in the ER who just looked kind of lost and desparate.

[lady_express_44]

Sounds like a rough start to the week, Barb.

Do you know if you have brainstem lesions, or lesions high up in the C-spine (1, 2, or 3)?

Cherie

[Jodylee]

OMG Barb! That is just so beyond ridiculous!! You have to wait til MONDAY??!! I am so sorry! Maybe you should call Biogen?? Wait, I just realized what a stupid idea that is. They aren't all that helpful anyway. They'll just tell you to call your doctor. As I'm typing this, I'm waiting to speak with ANY human being from my husband's soon to be ex gastro. They do not even have an option for you speak to a live person unless it's an emergency! You have to leave a message and wait for a call back every time you call. I am so sick of the way our so called health 'care' system DOESN'T work. It seems like the only way you can get help is to go to the er and wait forever. That might be the only option for you right now. I really think you should go (I know it sux) just in case. I'm thinkin' of you!!

[barb02]

Cherie, My MRI from a year ago did not show brainstem lesions. The MRI of my spine showed one in the T area. I am going to be pushing my neurologist for new MRI's when I see him in a few weeks.

[hurtsobad73]

Barb I am so sorry for this having to happen to you. There is no reason with them having noted of you already having one reaction to tysabri that the can't try and get you some help.

joellelee2000 - You are so right. This health care system DOESN'T work for us like it should and it burns me up.

We all should just starting hitting the "if you have an urgent or more emergent need, press (whatever) and someone will answer your call". Maybe that will get their attention.

Barb again I am sorry and sending you hugs from all who have been in your position.

M

[Erin524]

Originally Posted by barb02

On Sunday afternoon, I began to feel like I was having an allergic reaction -- similar to the feeling I had during my last tysabri infusion but not quite as bad. I was coughing for a few hours and then felt as though I was having trouble breathing (tightness across throat and top of chest). I finally took a benadryl and decided to go to the ER. When I got there they checked my vitals (all were fine) and told me I may have a 4 to 5 hour wait. I waited 1/2 hour, coughing had stopped, checked myself out, and went home and took another benadryl.

On Monday I went out to my local clinic and saw a nurse practioner. PCP is on vacation. They gave me a breathing treatment (did not seem to make a difference), she said she thought I had a sinus infection based on my stuffy nose and some fluid behind my ears, and wanted to presribe an inhaler for breathing even though I was not wheezing and oxygen level was 98%. I explained that I did not think I had a sinus infection; was stuffy due to taking all of the benadryl and the spring season. I am not exhibiting any of the other signs of a sinus infections. I also mentioned the possibility that I could be reacting to the tysabri or I could be exp the ms hug (already have it in my rib cage), but she just looked at me. She had no idea what I was talking about. She prescribed an antibiotic anyway and I thought it would not hurt to take it.

When I got to the drugstore the pharmacist told me that there was a 10% chance I could be allergic to it (related to penicillin -- I am very allegic to it).I am really glad she caught it. So I called the nurse practioner. Her nurse called back 5 hours later, said she knew that there was a chance of an contradiction but that I am running out of options due to allergies.(also allergic to sulfa). So I told her I was not taking a drug that could cause anaphylaxis reaction; especially since I was not convinced I even need an antibiotic.

I have to wait until Monday now to see my pcp. He does not prescribe antibiotics unless it is clear that you have an infection. He is also the doctor that dx my ms prior to my neuro. I was supposed to see him tomorrow, but they just called and said he would be out of the office. They wanted to know if I wanted to see someone else. I said no, "I already tried that." I am afraid he is interviewing. This clinic (part of an HMO) has been losing alot of doctors.

Sorry for the long post. Health care in this country sucks. I am fortunate becasue I have good insurance. I felt sorry for all of those people sitting in the ER who just looked kind of lost and desparate.

Sounds like they were prescribing Omnicef to you. I've got an allergy to amoxicillin (and probably all of the other penicillin based meds) and I've taken Omnicef a couple of times now and not had a problem with it...yet!

But, I always make sure that I've got some Benadryl with me when I take the first Omnicef and make sure my dad is close by with my mom's epi-pen, just in case I get an anaphylaxis. So far I havent had a problem.

But, you're right, if you're even the least bit worried that the antibiotic will set off an anaphylaxic reaction, you shouldnt take it. (I was desperate for something to help my problem when I tried the Omnicef)

Hopefully your doctor will be "back in the office" soon and he'll figure something out for you.

[lady_express_44]

The fact that your throat felt like it was closing too (not just trouble breathing), and that the sensation let up after a while (perhaps from the Benadryl) sounds a lot like an allergic or asthmatic reaction.

The hug makes it difficult to catch a breath, but I don't think I've ever heard of it causing the throat to swell shut.

I know that lesions in the upper C-spine (and/or brainstem too, perhaps) can cause breathing difficulties. Again, I don't know if it would literally close off your throat though. If it was more of a choking sensation, I've had that from the MS spinal lesions, and from GERD. Can you try Nexium to rule acid reflux out?

I have another friend with MS who is going through this too. She has lots of allergies to things, but they are currently leaning towards asthma. Have you ever tried a puffer (there's one available for "emergencies").

Cherie

[barb02]

Cherie,

I already take nexium. They wanted to give me a prescription for an inhaler and I turned it down. I guess that was not the smartest decision. My throat does not so much feel like it is closing up as it does tight; as if something is pressing on it. I am not wheezing and it does not hurt when I breath -- just tight. I feel like I have to occasionally take a deep breath. I am not experiencing any difficulty with swallowing. I should probably call and ask if they could send the prescription for the inhaler just to be on the safe side. I don't know if I am explaining this very well.

[lady_express_44]

No, Barb. I think you described it quite well in your first posting, but I embellished it a little, and forgot a little by the time I got to thinking and replying.

I have never had asthma either, and my COPD tests came out fine, but I used a puffer back in 2003 when I had my BIG spinal lesion attack. My doc thought that I might have picked up some virus/cold thingy that was going around, coincidentally while the hug was bothering me so much, and I went along with it to see if it would help. It did, but I am not sure if he was right, or if it just made me feel less stressed (by using it) when the "tightness" came on.

If your insurance will pay for the puffer, I think you should give it a try. If it helps, it should be effective quite quickly . . . so then you wouldn't need to waste any time getting into the ER again (if it doesn't). Hopefully that won't happen again though . . .

Cherie

[barb02]

Doctor's office sent in the prescription right away. I actually did not have to pay a co pay for it as my prescription plan covers maintenance drugs 100% the first time. I just went to the drugstore and picked up the inhaler and used it. I'll see if I think it makes a difference. If not, I guess I should be calling my neurologist about this.