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Hi Becky. It is unusual to get better with Rilutek. Normally you don't feel if it is working. It's not like Aspirin and your headache goes away. Sometimes weird things happen. Miracles? Who knows? You're feeling better and that's what matters. Take it a day at a time. You're doing fine on the forum as well.
AL.
 
Hi Becky. I am sorry to learn of your DX but glad you found this site. You'll probably have a lot of questions as time goes by. This place is great for getting help with any kind of issue. Write back and tell us a little more about yourself when you feel up to it! Cindy
 
Can you believe this? My Neurologist did a second blood test, as I asked him, and I got the results yesterday, and this time my GAD-65 Autoantibody level was 1.0, or in the normal range. He was going to put me in the hospital, and immediately do a spinal tap, full spectrum blood work, put a Valium pump in me, and do intravenous immunoglobulin treatments for 5 days. And they are very expensive. So I called him, and he said now that there was nothing wrong with me. What is with these Neurologists? I would have gone through all that for nothing. He didn't even apologize.

So I found an ALS clinic and they gave me an appointment in just 2 days. That must be a record, it can take months before you can get to see a top ALS Neurologist. This actually has me concerned. Does anyone think that I might be considered a mental case, and they want to put me into the psychiatric ward, because I keep trying to get a diagnosed with no luck? What about doctor/patient confidentiality? It is possible that my Neurologist talked with the ALS Neurologist about my case? I know I sound paranoid, but why would they see me in only two days after I made my appointment?

I know my body, and I'm positive I have either a MND or an autoimmune neuromuscular disease. Wish me luck when I see the ALS doctor tomorrow.

Conrad
 
I can't believe how much you have been through. Thank goodness you knew enough to ask for a repeat blood test. Maybe it was the labs error. No telling what the drugs would have done to you.

As far as the paranoid stuff, yea it sounds paranoid, but I have thought it too! I know that when I went to see my rheumo, the neuro nurse practitioner wrote to her and she wasn't even the one who referred me there! I do believe that it is against confidentiality, but docs talk anyway.

You're not crazy Conrad, you're concerned for your health and want an answer. Have you ever had a spinal tap? There are a lot of tests that can be drawn from. And, chances are you called the als clinic just after someone cancelled. It could happen! Let us know how you make out. Leslie
 
Good luck at the clinic tomorrow Conrad. I don't know why the neuo wanted to do those expensive proceedures but I haveheard on another thread where they sometimes try IV to rule out some other conditions. Did he change his mind because of an insurance issue? I can see where they'd back off an expensive treatment if they were using it as an experiment to rule out something and thought it was covered. Cindy
 
These Doctors could make you crasy I went to the als clinic yesterday and because I am progressing so slow they want to try IVIG for multifocal Are they crasy I was told I have als how they want to change it to give me a 5000 treatment take by the way can put ypu in kidney failure stroke you out give you a heart attack or just give you flu like symptoms I am sooooo confused:?: pat
 
Hi Pat, have you decided what you want to do? I'm sure that is a lot of deciding. Good luck with whatever it is. I really pray it works out. Leslie
 
Hi Pat,

I was diagnosed with ALS on Oct 31, 2006, by my 3rd. neurologist in 3 years. The others said "pinched nerve" but nothing conclusive. He said without a doubt I had ALS, and sent me for the clinical work-up to U of M - ALS clinic. They said MND for sure but it may be MMN and not ALS. I have been on IVIG for 3 months and go back to ALS clinic on April 5. I have not gotten worse except more tired and my one finger (antrophied completely since Sept 06) moves a bit. The bottom line is I may have MMN or "atypical ALS."
I never found what you said about the side effects of IVIG except "flu symptoms" which I had, but only after the first two (done 2 days in a row), because they gave me other meds to counteract the effects. I too think I have ALS but it's weird to me as MMN would be a much better DX. It is so weird to get any of these as they are all so rare. My cousin has PLS and there is no connection on that with me but that one is also so rare. Somehow even if its bad - having a clear diagnosis seems comforting. I am rambling now, but please know you are in the thought and prayers of lots of people including me. Take good care, Peg
 
Just a thought for all of you without a diagnosis yet. It might be a good time to get some life insurance if you do not have any, because after you have a DX of ALS you will not be able to get life insurance anywhere.

If it turns out you do not have ALS you can always cancel the policy. Just a thought about pre planning for the future of your families. I wish you all the best with your tests and docs. Prepare for the worse and pray for the best.

God Bless
Capt AL
 
I ams so up in the air Just when I thought for sure it was als they want me to try iVIG what does that say No one really can be sure in the medical field I am allergic to so many meds I may drop dead or it would nt work[ after trying it . I am going for all the blood test today one for mycoplasma so ILL GO FROM THERE tHANKS paTQUOTE=ltr]Hi Pat, have you decided what you want to do? I'm sure that is a lot of deciding. Good luck with whatever it is. I really pray it works out. Leslie[/QUOTE]
 
Hi Captain Al. Good advice. It can be a little unnerving waiting for the other shoe to drop, so to speak, if you let it get to you. My advice to everyone in this waiting game is to also do whatever you need to prepare for the worst but hope for the best. Plus this week I am enjoying the fact that I have no DX. Regards, Cindy

Patricia - How confusing! You must feel like you are going in circles! Did you say you once worked in neurology and if so do you have contacts still in the field? Do they have an opinion on what you should do next? All my best, Cindy
 
cindy I never worked in neuro i work in gastro family practice and cardio and they are clueless you would think they would help me find out they all are in denial as we all are at one time or another Pat
 
Appt. today

Hi Conrad,

I hope your appointment today goes well. I am thinking of you. Let us know what the doc has to say. Leslie
 
ltr said:
Hi Conrad,

I hope your appointment today goes well. I am thinking of you. Let us know what the doc has to say. Leslie

It has been a terrible week. I was examined by one of the top Neurologist at the Cleveland Clinic, rated the 3rd best hospital and 5th best Neurology hospital in the US. Just walking from the 3rd floor parking, then on to two elevators, to the office, exhausted me. I can't drive anymore, so I had a parent drive me.

He just asked me a lot of questions about how I felt, like if I could drive anymore, if I could still take a shower, and so on. I told him that driving was out of the question, taking a shower was getting harder every week, I have to be careful not to cut myself when shaving, because my hands are so weak, that I was having trouble swallowing, that I have twitches in my feet, legs, shoulders, back and hands (both types of twitches, the ones that make your body move, and the ones where you can see it under the skin). He then had me stand up from a chair, without using my hands, which I was able to do, but it feels like I am lifting 300 pounds, and I only weight 139 pounds (I've lost a lot of muscle mass, and my weight when this all started 9 months ago was 160 pounds). My voice is very nasal sounding, and I showed him how hard it is for me to swallow (it sometimes is just hard to swallow, and when I do, my throat jerks my head back). Then he checked my reflexes, and they were abnormally high. He had me sit on the floor, and try and get up without using my hands. I wasn't able to. Then he had me do it again, by gripping my hands, and when he pulled me, I was able to get to my feet. He had me walk down the hallway, and he could see how slow and out of balance I am.

It felt like I was getting nowhere with him, so I told him that I don't know what I have, but I do know my body, and I won't ever be able to do any of the things I like to do, because this weakness is progressive. He said that he didn't feel that I had a NMD, but he did schedule an EMG for April 6th. He said he would do some blood work (here we go again, I feel like I am going to need a transfusion, with all the blood tests I've had). We talked about Stiff Person Syndrome, but he felt that I should have a blood level much higher than 10.3U/mL, like in the 1000's. But Leslie's research found a person with Stiff Person Syndrome that had a reading of 62U/mL, not over 1000U/mL. Can you believe that the first Neurologist was going to put me right into the hospital, for intravenous immunoglobulin treatments for 5 days, on the very day that the blood work came back?

I have a bad feeling about this doctor, almost like I am some kind of joke. You wonder why? When the doctor was out of the room, I looked at his computer screen, and it had information about me, from the first Neurologist, and when he came back, he had my blood results from him too. They must be friends, and doesn't that break the doctor/patient confidentiality?

One last thing. A few days after my appointment, I got a call from the Cleveland Clinic, and the secretary said that the EMG would take 2 hours. Has anyone ever had a EMG that took 2 hours? The two I have had so far only took about 15 to 20 minutes. I'll let you all know how my 3rd EMG turns out. Sorry for the rambling post.

Conrad
 
Conrad,

I understand how you feel because I would want to start with a new doctor with his own opinion, not that of a doc that was no help to me. Did that other doc refer you to him? If he did then he can send records and a letter. Otherwise it was none of his business and maybe you should ask him why.

My EMG, of just my legs, seemed like it took about 45 minutes. Maybe he plans on doing numerous parts of your body. That would be good. I hope he turns out to be a good and helpful doc for you. Leslie
 
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