I saw My Neuro, and we discussed the Possability of Haveing PSP, Progressive Supranuclear Palsy. He agreed That the NINDS Criterias For inclusion and exclusion for a Clinical Diagnosis Was Met except for trying Sentiment. To see if there is any improvement of symptoms. He Kept saying that the symptoms fit and after I was done seeing him he reversed his decision about PSP and refused to try the Seniment.
He then stated that these symptoms also fit with PPMS, Primary progressive Multiple Sclorosis. But the MRI"s don't support that and my High level of protine in the CFS spinal fliud was due to a tramatic LP. He also said that is also why the red blood count in the CFS was present. I told him they only stuck me once but got too close to a nerve root and reaimed the needle and got the sample thay needed with out haveing to restab.
So he is dismissing the findings and won't test any further. Now he has me totaly confused and I believe he is wrong about the tramatic LP and is being negligent about this. During his exam we foind out that I have lost my feeling of a pin prick from my neck down and thats not normal. That would explaine why I never notice or feel Scratches and cuts until I see the blood or the scabs.
Soon after seeing him I got my third blood clot this time in my leg and this time it wasn't caused from an MRI, this is very werid I never had a problem with that before with the exception of the contrast injections that got botched during the MRI's. So now I'm thinking that the Contrast injections never caued the other two in the first place, but then again who knows.
the doc had a blood test and clott study done before I got this last clot and told me that the tests were fine and the clot study was within normal limits. So He ran a glucose test and a Thyroid test ,I'm not diabetic and my colesterol is in check and I'm not over weight or dehydrated and has no answer for this to be happening.Three DVT's in less than two years ? Something has got to be causing them. I stay as active as I can and don't just sit around either.
I know these two conditions are almost exact with symptoms but is there a way to tell them apart? Testing for both is also hard, and not very clear cut either. All I know for sure is this is getting worse day by day and Now the Neuro can't make up his mind. I think this is going to go on like this forever.
Maybe Dr. Lava will give his two cents about these differential diagnoses. We know that MS is hard to diagnose especially if symptoms fit other conditions, it is often a long process of elimination. You might seek out a second opinion at this point.
Glad you checked in, please do come back and continue to update us.
It can be difficult to make a diagnosis of MS and sometimes takes a while. PSP, however is usually very different in it's presentation. Sometimes it makes sense to get another opinion to help pin point a diagnosis. If PSP is a concern it would be worthwhile seeing a neurologist who specializes in movement disorders. If you are near a medical school, you might call the Department of Neurology there and let them help you see the appropriate neurologist. As far as your frequent blood clots, it may be helpful for you to see a hematologist.
Sorry if this may come out as harsh, but this is comming from a University Hospital Neurologist He is the Head Neurologist , I have tried to get this figured out at two university Hospitals and tow V.A. Hospitals. All of them hospitals Have a Neurology staff Of Movement dissorder Specialists and None have been able to diagnose over the last four plus years of testing and retesting. I have yet had any one of those specialists tell me about anything thats going on with me.
What has been tested for, what has been ruled out, what were the results from the tests and all Have just either ignored the quetstions or just change the subject or walk out of the room. The only way I find anything out is from going from doctor to doctor and they ask me questions like why havent you been checked for this or that or why wasn't this been tested for or how can they get the right rsults when they havent even ran a base for this test these wont even do any good if you dont run a base test first.
Look, I tell them, I'm just the patient here, I do what I'm told to do, I'm not the doctor who is supposed to know what tests are needed here, I don't schedule them or request them, It's not in my power or control anyway. I even get told to stop comming to some of the departments because they never found what the doctors are looking for and the tests get repeated so many times they get upset at me rather than talk to the doctor who has been requesting them.Instead they yell at me to stop comming to them.
The audiology department, the ENT department and Evoked potential people, Otoneurology, Rumotology, Sleep study, Neurophyscology, Optomology, Enviromental specialist All have given me small clues as to whats going on and let out some information to explain that I Plainly need to get out of there system and see a Specialist, one said an MS specialist, A couple have told me straight out that they tink it's MS, A couple have told me straight out that its An A-typical Parkinsons dissorder. But all have also stated that because they are not a Neurologist they cannot Diagnose me with what they told me..
Then why even tell me in the first place. I have seen so many specialists over the last four years and some are supposed to be Noted Neurologists, All start out by telling me I'm depressed and all prescribe Meds for this right away and it just makes the main symptom worse, Off balance and Dizzieness, I don't even think they look at my records because these drugs are documented with the reactions I get from them. I have had only two of the twelve NeuroSpecialists say just flat out that they just didn't know whats wrong and that they wish they knew more or were trained better.
Look these are Real Symptoms here, This is not Normal to be this way for so long and its just getting worse not better. I didn't just wake up one day and say , I think I'll go to the doctor and Make up a story just to screw with them , Or I'll just Have someone drive me for three hours to a Hospital And make up a story about this just to waste Gas, Money And Time for both me My driver and the Doctors.Or to Have the Big Bills from all of this Testing, and medications.
And a few ,I believe when they just don't want to admitt that they just cant give me any answers about it at all say, Look the Minds a powerful thing. So you must be willing for this to happen to you, ...Really, Ok then....I will it to go away then....Hummm Let me try this again....I'm willing this to go away.....Didn't work.....
I'm so sorry you've gone through this. I'm glad you vented and gave us more info on your doctoring history. I don't know what else to suggest except please don't give up on searching out other opinions with another set of specialists. Those that you've seen clearly aren't at the top of the food chain as far as their diagnostic skills are concerned, but somebody somewhere will be.
If I've read your narrative correctly, you've got two specialists who lean strongly towards MS, so I hope you'll find an MS specialist with whom you can explore this possibility until it's either ruled out for sure or you get a diagnosis.
Please keep us updated on your journey and keep venting whenever you need to. And please always include your history whenever you post so we know what you've already tried. Maybe somebody some day will read your posts and have some insight and helpful suggestions.
I apperaciate all the feed back and guidance you have given me, I think I'm done trying to find out if it's MS or PSP. Every thing I found out of these two conditions is, there is no cure . You may remember I was awarded SSI and now that I have been on it for over 15 months, I now have medicare. My wife and I have decided to just see our GP when new things happen and I can't tollerate the pain. Like this last blood clot,I thought I just pulled a muscle real bad and let it go a couple of days until I couldn't walk on it anymore, we just saw our GP and he new right away it was a blood clot and took approprate action.
But after a couple of days of being on the warfaren and lovanox again I got a real bad pain in my chest and could hardly breath. At first I thought I just pulled a muscle,then I remembered the blood clot and may have moved into my lung. I really thought that the pain would just go away, so I told my wife to just wait a while, she wanted me to go to the emergancy dep. at the hospital.
Then the pain got worse and it was going from the front of my chest around to my back and down my right arm, My wife started to tell me I was haveing a heart attack and called the emergency dep. and of course they told her to bring me in right away. I was put on oxygen right away and they took blood to check my INR levels, and started an EKG and it was normal, and my blood pressure was a little elevated but not serious.
The on staff Doc said that sense i was already on the lovanox and warfaren And the INR was at a good level there was no need to have a CT scan done for a blood clot in the lung. She told me that I had pulled an inner chest cavity muscle and it was spasaming causing the pain and breathing issues. she had a IV put in and shot me with something and told me that it should start to improve soon.
In about 5 min. it was tollerable, and i could breath easier, and I asked if we could leave. she wrote a perscription to control the spasaming and sent us home.I guess my point is that even if you were diagnossed with the right condition and were takeing the right meds, things still come up that have nothing to do with what ya have.I my case I get better treatment from the ER and Gp than the Neuro's.
The problem gets addressed and resolved way faster. I have decided that this is just going to be my new normal and just to adapt to it and just go day by day and if something comes up that I can't handle to just go to the GP or ER...I just don't think I have a need to find out what this is anymore. I'll just suck it up and drive on. The V.A. wants to see me end of april but I just going to cancle it. They just don't know what there doing. And it's just time to say enough is enough...
I'm 50 now and I know I can't tollerate the B.S. they keep shoveling me and I don't have to keep going through that either. Life goes on no matter if I have either of them, I choose life with out the Bull. No one said life would be fair, But I'll take it, even with all these symptoms and pain. Its way better than going through the other crap I have been. The man upstairs is the one who knows when it's your time, and why he gives you the chalanges you have with life. Its up to you to decide if you want to let other people make it worse.
It's also up to you to know and say when enough is enough, and not let others make your life worse ontop of what you are already are going through.Maybe it will surface or get found later who knows. I'm just not going to let the Process of diagnosis run my life anymore. It is what it is , there is no changeing that fact, and there is no cure. I can accept that, but not the BS that I have been going through. I just can't believe I let them do this to me for this long............
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