No ...I don't live in Alabama...and your wrong about haveing rights at the V.A. hospital....and the last time I stood up at the V.A. both me and my wife were escourted out of there viea armed police escourt....and told never to return ....I know it's not right but thats just the way it is...Really...I have the poliece report from that day and I still don't know why that was needed to be done to us...So I don't even have the privelage to go to the V.A. anymore...View Thread
Well ....I am deffinatly back to square one now ...Got a new appointment and thought I was seeing a real doctor turned out he was an inturn and told me he had to show my test results to his new Head resident....
I don't want to mention names...but guess what ....it was the same doctor that I got at the V.A. hospital....that told me I have Migraine with out headache. and I must be willing this to happen...and that my symptoms were highly entertainning...
I told him that if he were to get her involved again that I would not get anywhere with her and I would have no choice but to leave....He looked over my test results again and agreed that they show that something is causing my symptoms to progress and is continually showing degeneration for inner ear function for balance.
Now 100 % loss in right ear and 65 % loss in left....Remember I can hear just fine ...Just no function for balance....He left the room and low and behold he went directly to her and I overherd thier conversation in the hallway because he left the door open....
She laughed out loud and told him she remembered me and told him to ask about my head bobbleing when I try to find center posistion after I move it....then he said," I didn't notice it before, Thats very entertainning"....I knew that this was going nowhere and told him that....So I told him that if there were no other doctors that could help I had to leave....
I then remembered about the Ataxia test that I am still waitting for the results from and asked him if the head bobbling could be related to it...He said No...So I left and when I got home I looked it up...and yes I found about six documented cases ,Progressive Ataxia with Palatal tremmor....Hummm...I believe that the Neurology Doctor I was seeing that ordered this test may be on the right track...
I also remember her saying that if left untreated it can advane to Chronic or even progressive stage.The tests for this are very expensive so, she is only testing for one type...and not all the 47 differant types can be tetsed for...Currently the cost to have the ones that can be tested is about 8,000.00....the one I am haveing done is 1,100.00....
what really bites is that it takes 8 weeks before tha results come back...My biggest worry now is only one form of Ataxia is being tested for and if it shows neg. for the one she ordered, now who do I see?.....And which form do I have ?, The inherited one or the one with the underlying cause one....?
I know the Neuro that ordered the test for Ataxia told me that because of the long distance between thier hospital and where I live she felt that any follow ups could be done with my currant Neuro.....But I told him what happened he stated that he thinks I should stay with the migraine without headache one...No way....
Sence when is a patients symptoms Highly entertainning? I told him and I asked if he could referr me to another doctor who knows something about Ataxia.....He basically said he has exhausted his options and said good luck ....Wow...now I'm really back to square one...with just a glimmmer of hope that this last test will show something....
But even if the test results come back pos. or neg. I once again have no doctor to goto.....What a rollercoaster ride.......View Thread
Well, I don't know what to say now that I was sent to this Doctor, She was more like a general neurologist and why I was sent to her I'll never know because It seems like I'm back to square one with this whole thing now....after going through all of the examining and going through my recods she tells me only a couple of my symptoms are movement related the rest fall into spinal or a brain stem dissorder. She then tells me she wants to have a blood test for Episodic Ataxia type 4 done,but it has to be preapproved by my insurance before it can be done.
From what I have learned about Ataxia it's a way to explain the symptoms,but there is always an underlying cause,like lupus or ms or als...as well as a host of other problems. and there are over 40 differant types of Ataxia....I do understand that this is or maybe part of all the ruleing out process but if there is an underlying cause for it all, wouldn't it be better to identify the cause rather than confirm the symptoms with an Ataxia DX. the 40 types just seem to identify the length and severity of the symptoms, and some differentiations of symptoms. But they express an underlying cause.
She told me there was no need to have any more follow ups with her and that she will send the nesscesary paper work to my insurance and that my local neurologist can prform the blood work for this test. She did how ever discover that I now have an unusualy high heart rate but my blood pressure is still very good. and prescribed a new medication to help slow my heart rate down. some kind of beata blocker. My BP was 128/ 70 and my heart rate was117 bpm.lying down and when I stood up it went up to 121 bpm. but the blood pressure stayed almost the same 129/ 76...Thats a new thing that just started happening....I told her that I have noticed in the last couple of weeks that I have noticed my heart feels like it's raceing, beating out of my chest at times when I sit down is when I notice it.
She just dosent know whats causing all my symptoms and sent me back to my local Neurologist and my local neurologist has referred my to another Neurologist and I see the new one in a couple of more weeks.....But no word yet about the blood test for Ataxia.... I guess what I realy need to find out is Ataxia a stand alone dissorder or is it truley a description for an underlying dissorder? the Nurologist that wants me to get the test wasn't too helpful about this subject.View Thread
I got a new Neorology Doctor now and basically started over. He went through all the testing results and over all the doctors notes and readings of the pervious tests. He found some things that were never told to me and asked what I wanted from him. I told him that I need to get a handle on whats ever going on with me and to find out if it can be cured or treated. He said that this is deffinately a neurological problem I am haveing, He ordered a new MRI and contrasted MRI of the brain. He ordered The Evoked potential tests and some blood work. Some sort of pannel test.
The Mri's show Normal and the evoked potential test showed some problems in my left ear and told me that he suspects now that the inner ear function for balance is now being effected.I have lost my right ear function totally for balance , not for hearing I hear very well in both ears just function for balance is being lost. He then told me that he dosent think it's ms but he wont rule it out. and has referred me to another Neurology doctor . He explained that thats why I have no balance and why my body can't adapt for the inner ear function loss..It is continually getting worse so your body can't adapt.
He told me that he just dosen't know whats going on and told me that he wished he were trained a little better and thinks this is something he has never had experience with. and that he feels that a doctor in a bigger city would have a greater knowledge of what this could be. I asked if he would do a lumbar puncture test but he told me that the MRI was a better way to check for ms. I asked, dosen't the lumbar puncture test for more than just MS. he said that if he were to see something in the MRI to warrent it he would have ordered one. So in a couple of weeks I get to see another new doctor. I sue hope this one will know what to do....View Thread
I too have been looking for info about Hives and MS, found a couple of things about it and you are right, not many doc's will admitt to thier relationship. I even saw stuff about shingels and MS but nothing about the chicken pox thing. I never had chicken pox but I do know that what I had was more of a rash but more closely resembeled welts or hives. whats realy weird is they just stopped now, no more itching or burnning or welts? Now I have been dealing with this really sharp pian in my chest and it goes all the way through to my back. Only lasts for an hour or so but sense my last attack it feels as if it's trying to come back..lingering if you will. Same pain but not as intense or lasting as long. I asked someone I know who has MS and they told me it was called MS hug...? So I'm trying to find out how long this could last...View Thread
Crystal, I too have the same problems with the words thing and peopl make fun of me when I talk. but I don't realize I say it that way so it dosent bother me much. And as far as the feeling like ya broke a bone , well I some times feel like I broke my arm, but I know I didn't. this week though I felt my second MS hug..at lest thats what some ppl are calling it. I was lucky it happened while I was in the emergency room when it did. I thought I was haveing a heart attack. I then relized the pain was higher than my heart and went through my chest and in my back as well. The ER doc ran a buch of tests and did chest X-rays while it was happening and did blood work to rule out other things that would cause it but found nothing wrong....But then again I was told that theres nothing wrong with me and I must be willing my symptoms to happen, and yet haven't been diagnossed.View Thread
All of your suggestions dont make any sense to what happened to me on friday night . I don't go out side much and never go into weeds I have a sever balance problem and the extreme heat we are getting makes my symptoms worse so I don't go out. I only stopped takeing my high blood pressure meds, but have been on them for about a year now and no Hives. I was taken off it resently to see if my muscle cramping burnning and itching and pins and needels sensation would go away.My doctor thinks the high blood pressure meds are causing it.But on friday night I awoke with burnning and itching in my left arm. I have a blood clot in my left arm also. I felt my arm and felt a bunch of raised welts and thought they were masqito bites, then I realized that there were way too many to explain that.
And boy the itching was unbearable.Now get this the welts or hives were only where my blood colt is at in my arm and there were none anywhere else.My wife called the emergency nurse at our hospital, and was told to go to the emergancy room because she was worried about the blood clot being the cause because my fingures were so swollen. I couldnt even bend my fingers.
The emergency room Doc, asked if I had any changes in my meds or anything new in the hose that would explain it. And of course there wasent. Jut about when the Doc left the room I got this killer pain in my chest but higher than my heart and it radiated through to my back like I was being crushed in someone hand. The nurse ran to get the doc and she hooked me up to the EKG and told me that I was going to have Blood work and X-rays done right away.
I asked her If we could wait a little bit because it was makeing me have a hard time breathing and the pain got worse everytime I exhaled. She got me a wheel chair and had X-rays done and by the time I got back to the room the pain had almost gone away. Acouple of hours later the doc came back and said everything is ok with my heart and she can't explain why the pain was happening or about the Hives and itching and burnning and tingleing and numbness is only happening in my left arm and only from the elbow to my fingers. So I was given some benyadril and sent home and the discharge said Unexplained Cause for symptoms.
Sense I was discharged from the emergency room I have been haveing the pain in my chest but not as bad but enough to keep me from sleeping. and The hives have somewhat stopped a few poping up ocasionally but man the itching and burnning is just driveing me crazy and the benyadril is not working. Or the hydracotizone cream either. I called my Primary care Doc. at the V.A. but has yet to answer my call.
My question is Can or Could this all be caused By M.S. ?View Thread