, I have been going through this for over four years now. Dizzy off balance 24/7 is the major symptom. But over the last four years I have had many other symptoms that are very consistant with MS. I have had many Mri's of the brain and CT scans and evoked potentials and tons of blood testing to rule out other conditions. But The Doc's have never done an MRI of the spine or neck. just an X-ray of my neck because my neck is so very stiff and sore. With this going on for so long now and no treatment I believe this to be progressing very fast now. The MRI's showed lesions but was told they are consistant for my age group, I'm now 50. The CFS lumbar puncture was done last year at my request, and was told that I had a high level of protine present and high red blood cell count. I was told that this is a result of a tramitic lumbar puncture. I had it done W/Flurascopy and during the proceedure they got close to a nerve root but didn't pierce it or widthdraw the needle just reaimed it and finnished the proceedure.I was told that he will not test the sryum because he believes it to be a bad LP. The Neuro now tells me I have no MS and this is a vestibular problem. I went through one whole year of testing for a Vestibulr condition and all were ruled out, I mean every type of vestibular condition was tested for. and at the end of the testing I was told that it was deffinately a neurological condition affecting the Vestibular system. I never heard of MS being in the spine before until I ran into this site. And I ran over all the tests that were done on me in the last four years and realized that they Never MRI'd the neck and spine, The present Neuro says he wont do anymore testing and Told me that all the symptoms that I'm going through can be explained as a A-typical type of Parkinsons. I Asked him what is A-typical Parkinsons, he told me Progressive Supranuclear Palsy PSP for short.Now I'm totaly confused and really don't think he did everything to rule out MS before he came up with this new thought. I don't think this is an a-typical parkisons problem but the symptoms are very close to each other. I was wondering if he is unable to find the MS and is writting this off as A-typical Parkinsons, because like he explained to me that I fit all the Criteria for a clinical diagnosis of this typ of parkinsons, except starting me on the Sentiment drug. I'm supposed to see him on the 24 th of this month, I'm a little concerned that he is going to start me with this sentiment, (1) If this isn't Parkinsons, will this mess me up takeing it. (2) From what I have found , PSP has little to no bennifit by takeing this drug. (3) Why won't he Do the MRI of the neck and spine to finnish ruleing the MS out first. (4) after going to Neuro's for so long now I really don't want to start this all over again by getting a new doc.Do I need to fire this guy and start all oner again ? Or can I safely jump through the hoops and start this med to see what it dose ?
Q: Hello, I'm new on here, Do I really need to see a new doc now?
Hi Ken,
Welcome to MS HeathCentral. It certainly sounds like you have been experiencing quite a bit during the past four years. First of all, I don't know much at all about Parkinson's disease. I did a quick google search combining vertigo with parkinson's disease and found that they can be associated. We are not medical professionals and certainly can't make medical recommendations.
If you want to pursue the possibility of MS, you should fine a neurologist who specializes in MS. You can contact the local chapter of the National MS Society to get some recommendations of doctors in your area (nmss.org). It is true that as we age, there may be abnormalities (or lesions) which can be seen on MRI. It is not as common to be diagnosed with MS after the age of 50, but it definitely can happen.
Have you researched everything there is to know about atypical Parkinson's? If you are not getting the answers you need from your neurologist, I would consider getting a second opinion. Your doctor should be able to help you understand what is going on with your body.
Good luck.
Lisa
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I have checked out everything about PSP, and about a-typical parkinson dissorders, PSP, fits all my symptoms to a T. Acording to the NINDS Criteria for clincal diagnosis for this condition I meet all the exclusion criterieas and only one of the inclusion criteria hasen't been met, The trial of Senimet. From what I have reasearched about PSP, Sentiment, carbidopa/levadopa combo, this kind of parkinsons has either very little benifit , not lasting long or no bennifit at all. Anyway the Neurologist refuses to even try the med and states,I don't have this condition. And under the NINDS Criteria I already fit possable and probable PSP, but he refuses to even agknowledge that fact.
During my long road during Diagnosis, I was also told to see an MS specialist from the E.N.T. department while I was going through extensive testing for any and all Vestibular conditions, The doc's there told me flat out that I need to see an MS specialist. But because they were not a " Nurologist " I could not get a diagnosis of MS from them. and they believe it to be PPMS or SPMS then. That was about two years ago. You see, I'm stuck in the V.A. medical system and It seems like none of the departments that you get sent to have either little to no communication between the other differant departments.
I have also noticed, after I requested all my medical records, that the doctors notes during tha visits and thier conclusion statements that, there are huge differances between what he states and what you state to him. It's like reading the recods, and he Writes the patient says this...and it was never even said at all. I believe it's because they are on a one track road with what they believe you have and writes what they want to go along with what they believe. I can see very clearly how other doctors while reading this could go way off track and go the wrong directions with anyone who is being treated by them.
I have been stuck in this system for four years alone because what ever this is thats going on with me,I lost my job and my insurance. I was awarded SSI and now that I have been on it for 15 months have gotten medicare. So now I'm free to fire these guys and seek proper treatment. My wifes biggest concern is that she believes this to be directly realated to the Gulf War. Syren, Rysen, and Anthrax Vaccienes that we were given before deployment. All are Nerve agents and very deadly. Alot of these symptoms also fit the gulf war illness, but I believe that yes it all could be related but the Government, V.A. Won't and will not admitt that.
I believe that this may have developed from the vacciens but, it needs to be found out what this is first, before it can or could be connected with the vaccienes. Reguardless either way this is very dibilitating and fast in progression.
I did how ever get a chance to see the enviromental specialist who is incharge of the Gulf war illness, who looked over my records and gave me a exam and told me flat out it's Parkinsons, So you can see How Confuseing this has all been. And once again, because He's not a " Neurologist " he cannot give me a Diagnosis of Parkinsons. I asked the Neurologists many times, I have been comming here for over four years now and have had extensive testing, And they still can't tell me if this is Neurological , Autoimmune ,Vestibular , Or physcological, They tell me that eventually this will show up on one of the tests, but when? how long will I have to wait? Will I have to die before they figure this out?
I have decided to go to a new doc now who says they have experieance with both PSP and PPMS and SPMS, Thay also use a 3t MRI and I'm not sure If I can even have an MRI now that I have a New blood clott and I am on Warferin. I was told that you can't have an MRI while being on Warferin. Is that true? anyway the Appoint ment is on the 24th of this month and the V.A. wants to see me on the 29th of this month. Depending on my appointment on the 24th and what they btell me, I will decide then if I need to stop with the V.A. Thanks for your reply, I would appreaciate your imput about this If you don't mind...