Up date from Hematologist and Neurologist today!

I posted a couple of days ago about the results of the blood test that the Hematologist ran on me. The results came back showing that I have the Factor V Leiden mutation gene. He called me back yesterday and said that I had only a slight defect, Only one copy of the gene. He told me to take one 81mg baby asprin a day, and he would go over the entire report with me on the 29th of April at my follow up with him.

My Neurologist sent for the results from the Hematologist yesterday. Today the neuro called me back and said that he still did not think that the white matter lesions on my MRI were consistant with any stroke, and that he did not think that the fact that the blood test showed the factor V Leiden gene was related to the pathology on  my Brain MRRI's. He said to let the Hematologist treat me for the Factor V Leiden, and he will see me for the changes on MRI.

So now I am a little confused as to what is going on here! Any ideas would be  helpful to me now! I still have to go to the Low vision center on the 29th also to see if they have any visual aids to help me with my visual field defect. Also I have an appointment with a Reumatologist on May 19th to  rule out sjogrens and what ever else Reumatologist can rule out. I am starting to feel like Humpty Dumpty!!!! All of these specialist cannot seem to put me back together again!!!

Santana

[Deb61]

Just because you have Factor V Leiden, it doesn't mean that you won't develop any other health problems.  That's what's making things so complicated for your doctors--it appears that you may have some other things that may be going on with you other than the Factor V Leiden.  Your neurologist is thinking that the areas on your brain are probably not caused from a stroke, and are looking like white matter lesions.  They must have a certain shape to them and are located in parts of the brain that suggest that they are indeed white matter lesions.  I bet your neurologist will want to follow up with more MRI's to make comparisons.  

It sounds like you're in good hands.  I am glad that they found this clotting problem and treat you for this and are looking into Sjogren's and other autoimmune diseases.  

Deb

[santana8]

My Neuro has been doing repeat MRI's for two years every six months. So far no change in the 10 white matter lesions, no enhancement, and no new lesions. My spinal tap was negative and showed no O banding and all other blood testing was normal. My neuro thinks I had ADEM, but is monitoring me for MS still. The reason I wanted the clotting checked was because there have been a couple of young deaths in my family caused from major clots. My brother 16 years ago had a massive heart attack at age 31. And about one month ago my first cousin age 29 had two massive strokes and died. She had recently been started on a new birth control pill 6 weeks prior to her death. She had a clotting disorder that she didn't know she had, and the complication of the birth control with this pre-existing condition is what killed her the doctors said. Also my brother who died, his son was dx with Factor V Ledien two years ago. So with all of this history and my undxed attack two years ago, I felt that I needed to be tested. The Hematologist when he heard the family history wouldn't let me leave the office until he tested my blood for the full battery of clotting disorders. The Factor V was the only one that came back possitive, and he said that it was only mildly abnormal. Only one 81mg baby asprin a day he said. Also I only have one copy of the gene, so that is not that bad either. I am glad that I know that I have the Factor V  Leiden, so now I can protect myself from complications with it better. I do wonder how they can tell  what the lesions are from though!

Santana

[Deb61]

I wish I had the medical expertise to tell you how they know it's white matter lesions or not.  I can see your dilemma, now.  You're probably wondering whether or not to trust your neuro because he gave you this diagnosis.  You've got real questions as to whether or not these "lesions" are actually evidence of stroke.  

I would, if I were you, find out all you can about Factor V Leiden.  Specifically, I would find out if this increases your risk for other autoimmune diseases (like Sjogren's).  Plus, I would want to know if this causes white matter lesions.  Lastly, I would want to get a second opinion from another neuro after the blood work-up from your rheumy and hematologist, just to put your mind at rest.  

I have a question--why does your neuro think that you have ADEM when there was no clear evidence of an illness?  How come he didn't think it was CIS?  Also, why did he think these were white matter lesions--did he explain this to you?

Deb

[santana8]

First let me say that the first neuro I went to dx MS with only a MRI without contrast and a possitive VEP. He sent me out of his office with a bag of Rebiff. He hadn't even done any blood work or anything else. I wasn't comfortable with this without further testing so I got a second oppinion who is my neuro now. He done the blood test, MRI with and without contrast and an LP. The LP was negative  and the MRI lesions have not changed in two years. The attack I had was two years ago on Apil 2nd. He said even before the LP came back negative that there was something quirky with me, and I wasn't  looking like MS. I supose the reason for the ADEM dx is because I have only had one event and no further progression. The only prodome I can think of was a medication change six weeks prior to the attack. I was pulled off of Zoloft that I had been on for 14 years and xanax that I had been on for eight months both without a tapper and put on Paroxetine the very next day at 30mg without gradually increasing to this dose. Six weeks after this change I was standing in a store and my vision went haywire. Distorted first then extreme light intolerence, then flashing and flickering lights. After this mental status  changes, confusion, vomiting, diareah,shooting pain down my thighs, back pain, rapid wieght loss, 40 pounds in three weeks,sevier depression and anxiety, suicidal thoughts( which I had never had before) even with my history of depression and anxiety.  My vision got worse and went from flashing flickering lights to dimmed blurred vision. My eyes were completely numb at this point. Then as the feeling started to slowly come back the deep pain in my eye sockets started and lasted a year. I discontinued the paroxrtine as soon as my vision started  doing this and got back on my Zoloft and Xanax. All or the mental changes went away, but the vision changes were still there. After one eye doctor finally done a visual field test and discovered the defect, I was finally sent to a neuro, where they found the lesions. This was eight months after the onset. I have always thought that the medication change and the way it was mishandled started this whole thing and my neuro even said this once then changed it to well it may have been one of the contributing factors. On the Paroxetine side effect sheet it list meningitis, optic neuritis, neuropathy, cerebal ischemia, stroke, thrombosis. These are only the ones that I think may be relevent to the lesions, and are all in the rare category. Also in the rare  part is some conditions that I have aquired since the attack such as blepharitis(inflamation (inflammation) of the eye lids). dry eye, Meibomian gland disfunction. So I don't know what happened to me.It is somewhere between MS, ADEM, Stroke, Medication reaction. All I know is there are a lot of symptoms and conditions that I feel are not being tied together or looked at at all.

Santana

[Deb61]

I feel for you--I know what it's like to have a complicated medical history.  It makes it hard for your doctors and for you to get to the bottom of what's going on with you.  

After a medicine change for me, I had a flare up.  I just started my Copaxone and an antidepressant.  The antidepressant caused me to get little sleep at night and I think the diagnosis and Copaxone caused some stress . . .

Well, I think this "little" change upset my extremely delicate balance---sheeeesshhh!!!!!!  I got tremors, had difficulty swallowing, and was choking at night.  I'm explaining this to you to show you that even the most minor of things may cause a flare up (if you have a demyelinating disease or autoimmune disease).  Heck, even what I think is little stress will do it.  And what you went through, my dear, was anything but minor.  You were told to take away some medicines cold turkey that you took for a long period of time.  

I hate that you're feeling like a ping pong ball--being batted around.  You've got such a complicated medical history.  It does sound like, however, that going to the rheumy and hematologist will help shed some light on some things or rule some things out.  

I feel for you, and I'll be praying that you get the BEST possible doctors to get to the root of your problems.  

Deb

[santana8]

Thanks for thoughts and understanding. I am going to point blank ask my neuro when I see him again in May how he knows that it is not stroke or ischemic related. I want him to explain the difference in the lesions in both situations. Also I plan to bring up this medication switch and ask for a firm answer on this possibility instead of saying that it may have been a contributing factor or it has not been documented in the literature with these medications. I want his honest opinion without him acting afraid to comit to an answer to the medication question. I have high hopes for the follow up with the Hematologist and for the upcoming Rheumatologist appointment. I  have a gutt feeling that these two specialist are going to be the ones who tie this all together! I might be wrong but I  just have that feeling. I guess the anxiety I am feeling is because I feel like I had something seriously go wrong in my brain and if all of these specialist cannot figure it out then maybe there is no answer. I have things that have came up since the attack that in my opinion are screaming the answer but none of these doctors are willing to try to piece the picture together. Instead they all stay focussed only on thier own specialty. I think that is why none of them can figure it out because they are only lookint at one piece of the puzzle. The answer will come when one of them start looking outside thier own box. This is what the hematologist said to me too!

Santana

[michael1028]

Hello santana,
    Just reading your comments. Just a quick thought, my prayers are with you that your gutt is correct !!!  Hope that the two can come out of the box and figure it all out. I sometimes think some of these docs can only figure it out if they have read it in a medical book. If you show straight down the line symtoms (symptoms) then they figure it right away. makes you wonder if "out of the box thinking" is taught anymore.
  All the best for a great weekend.
God Bless
mike  

[santana8]

Thanks for the prayers!  I too am amazed that I have seen all of these specialist and it seems that I am the one who is having to initiate further testing. I supose if I done what my neuro is doing, just waiting and watching, then  I would have never have discovered that I have the Factor V Leiden gene. This is important to know not just for me but for my entire family. I have a 17 year old neice who was just dx with Raynaud's which, like Factor V usually effects the venous structures. Her Mom,  my sister is now letting her Rheumatologist know of this Factor V gene in the family to see if it is related. My Nephew was dx with it two  years ago at age 26. My brother, His dad is the one who died 16 years ago at age 31 with a massive heart attack. He had a blood clot go to the heart. I feel better knowing that even though the hematologist said that I only had a slight mutation in the gene , He started me on one 81mg asprin a day. If I hadn't pushed to get these test then the neuro was not going to order them. What really promted me to push the issue was the death of my 28 year old cousin one month ago. She had a clotting disorder too, but didn't know she had it and was started on birth control pills. This combination is what the doctors said that killed her. After her funeral I took matters into my own hands, and I am so glad I did. Not just for  me but now all of my family members are going to be tested!  I am having real difficulty trusting doctors lately. That is bad to feel this way, but I feel like they are just passing me around and I am getting tired of it after two years of it!  I am not trying to be a pain in the butt with them, but if I have to be then I will, because my life may depend on it!

Keep me in your prayers

Santana

[sllowe]

Hey -

Well, your widdleing this down it seems.  I'm glad you know about the clotting disorder, and that it is mild.  I wanted to wish you all the best w/your next 2 Dr visits and follow ups, and also to add that I asked the Hematologist I went to the other day if a blood disorder could cause the lesions in my brain and spine.  She said no, but a stroke, or lack of blood flow would show up on MRI, but that would not be the same as demyelinating lesions.

So Santana, as a fellow "keep on diggin" kinda person, you keep on keepin on.  

Just be careful and make sure you get some treatment for your disorder or disease.  Get a 3rd opinion on the MS or ADEM is you have too.  I think this is JUST as important as your family history w/clotting disorders.

be well,
SL

[santana8]

Thanks for the good luck wish! I am hopeful for the Rheumatologist appointment. My neuro said that the pain and stiffness in my neck and shoulders was probally from the arthritis/ degenerative stuff that showed up on the MRI of the neck and brain stem. I think the Rheumatologist would be the best person to address this issue along with the possible sjogren's because of the sevier dry eye and meibomian gland dysfunction in my eyes. I am really looking forward to the appointment on the 29th of April with the low vision center. I probally won't be getting any dx there but hopefully they will be able to help me with some kind of visual aids, prisms or vision therapy to help with the visual field loss. It has healed a lot on it's own, but with a little help from a prism maybe I could actually drive my car again after two years of being totally dependant on others to get around. I realize though that they may not be able to give me prisms that will work because of the problem being in my brain and not my eyes. But they do treat stroke and head injury patients too, so who knows? It is definately worth my time to find out. Finally! a doctor who might be able to give an answer not just another question!  I am natuarally a digging persistant person in everday life, not just in the world of a DX.  I guess  in this situation it is paying off for me! The doctors don't know quite what to make of me, but honestely I don't care. My motivation is my three boys who are my world! I am so persistant to get answers not just for me but mainly for them. They need me, and I don't want to let them down! If my neuro dosen't give me some kind of answers soon I may see another neuro to get a third opinion! I like my neuro,but I sometimes feel that I am having to keep pushing him to see all of the other symtoms (symptoms) going on here! The hematologist told me that this has been going on for two years and that sometimes a DX of ADEM is something that they stick on something when they don't know what it is. He said he thinks it is time for the doctors to step outside of the box and start looking for the answers with me! I think he is right!

Santana