Yes, indeed your family's hematologic disorder is complex and interesting. I, too, have Von Willebrands Disease, Type I (by far the most common). So do my father, sister and her daughter. Low platelets can be seen (often intermittently) in the variant of Von Willebrand's, Type IIB. As you probably know, the protein (Called the Von Willebrand's Factor ) is reduced in type I. People just don't make enough. In the various II type the protein is defective and doesn't function correctly to clot normally. If it is type IIB, the disorder is what is called "autosomal dominant". So if your parent has it and your son has it, then so do you.
I noted that all the important factors are near the bottom of the normal range, including the platelet count. Yes, it is in the normal range, but barely. Though, I am not a hematologist and this is definitely not a field of expertise, I suspect, with your history of heavy periods and iron-deficiency, you DO have it and the testing missed it. The thing about the Von Willebrand's factor is that it can vary in levels from minute to minute. Many people with the disease have normal (usually low normal) and need repeated testing to carch it low. Children who become stressed and frightened during the blood drawing process, can have their VWF shoot up into the normal range. I've seen it over and over. Things like stress and estrogen will cause it to elevate temporarily. Though it is "theoretically possible" to suppose that your sisiter has more than one hereditary, bleeding disorder seems a little silly.
Also in type I, which is probably not the case, but I don't know about the other types, the level of VWF varies with blood type. People with O may have lower levels and the ranges need to be reported with respect to the ABO blood type. LOL, I'm sure you can tell that my family has recently been through this.
It appears to me that your doc dropped the ball on the interpretation of the sleep study. Without deep sleep you can't recover the fresh, rested feeling. It is critical to proper function during the day and I think this needs to be peursued, possibly with another neuro. There are also common meds, like Benadryl, and OTC sleep aids, which can effectively block Stage 4 sleep and cause ongoing problems.
Sherri, Thanks SO MUCH for jumping in with you knowledge of sleep studies. Good job!
Back to the iron deficiency. Your iron stores remain low, though you no longer have anemia. However, relative deficincy in iron levels can show up in kids' behavior and performance in school. They often learn poorly, are distractable and have low energy even when the blood count has come up. The other brain symptoms persist until the iron stores come up farther. This I know as a former pediatrician. Keep taking your iron.
I hope this has been helpful.
Quix
Quix,
Thank you for your reply. I appreciate your help and time to research this. I hope you are well.
I did not have grogginess, clumsiness, memory problems, or difficulty waking up before I took the antidepressants.
When I went in to discuss the results of my sleep study the doctor said my symptoms were all due to anxiety. He did not mention to me that I had no stage 4 sleep. I only found that out when I later requested my medical records.
Here are the normal ranges for my lab which were done in March ‘07:
Ferritin 10-291 (mine was 16.7 ng/mL)
Hemoglobin A1c 4.0-6.0 (mine was 5.2%)
Iron 30-150 (mine was 45 ug/dL)
B12 247-911 (mine was 324 pg/mL) this one was done in Oct. ‘06
Other blood tests I had in August of 2006:
White blood count 6.8 K/uL (my lab’s normal range is 4.0-11.0)
Red blood count 4.49 M/uL (3.80-5.20)
Glucose 125 mg/dL (65-99) I had not fasted
Platelet Count 175 K/uL (150-400)
HCT 41.2% (35.0-46.0)
HGB 13.7 g/dL (11.6-15.5)
Thyroid tests:
Free T3 3.0 pg/ml (2.3-4.2) on 8/7/06
Free T4 1.1 ng/dL (.8-1.6) on 8/7/06
TSH 1.00 uIU/mL on 8/7/06 and1.24 uIU/mL on 6/23/06 (.40-5.0)
TSH Reflex 1.37 uIU/mL (.35-5.5) on 3/25/05
TSH reflex 1.15 uIU/mL (0.40-5.00) in March ‘07
The bleeding disorder is complicated. My father, sister’s and son’s hematologists have all said we have an interesting case. There is more going on with the platelets than simple Von Willebrand’s. They are still in the process of an official diagnosis. All three have low platelet counts. My sister was told she has Type1 Von Willebrand disease, probable congenital thrombocytopenia, and platelet dysfunction consistent with storage pool disorder. My son has a platelet aggregation disorder with mild thrombocytopenia. My son’s hematologist seems to think it is one diagnosis rather than two (something quite rare) but so far she has not been able to determine it yet. She sent my son’s labs to the Mayo Clinic but we haven’t heard back yet. My son’s hematologist said I might have the bleeding disorder as well since my son, father and sister have it but I have only had one set of labs done in July ‘06 and they came back normal.
Von Willebrand Panel:
Factor VIII Assay 101% (55-150)
Von Willebrand Fact AG 67% (50-165)
VWF ACT (Rist Cofac) 56% (>40)
Von Willebrand Factor VIII Activity 113% (56-190)
Von Willebrand FAC AG 64% (51-185)
Von Willebrand ACT 70% (44-195)
I do get occasional dizziness when I move my head (a whirling feeling) but this is not a very common occurrence for me anymore. It has reduced significantly since my symptoms began.
THANK YOU AGAIN FOR YOUR TIME.
Gromit
I studied sleep disorders in one of my classes. I'm not exactly sure of this number, as I approximated it from a chart of a typical pattern of the stages of sleep during a single night. However, it appears that in a typical night's sleep of 8 hours, about 2 hours, or 25%, is spent in deep sleep, or stages 3 and 4. A much greater proportion of deep sleep occurs in the first half of your total sleep than in the second half. These stages involve the least amount of brain activity.
You only slept about 5 1/2 hours. Still, I would think that the percentage should be the same or greater. You only spent 8.7% in stage 3 sleep and got no stage 4 sleep. Maybe that's why you wake feeling unrefreshed?
S~
Hi, Again I'm sorry to have been absent when you arrived. I read your post a couple times. What jumped out at me in the beginning were the symptoms you developed on the three anti-depressants which were all SSRI's. Are those the same symptoms that you were being treated for? By this I mean did your depression show up with grogginess, dizziness, clumsiness? I have seen a lot of "stuff" online about certain people reacting badly to SSRI with onset of neurological symptoms. I haven't specifically researched it, but it wouldn't surprise me.
The cognitive function difficulties can be an underrecognized presentation of MS, but also occur in many othe disorders. Yes, a sleep disorder, can cause everything you have mentioned. It can cause all the cognitive problems, exacerbate depression , and is classic for increasing frequency of migraines.
I can't evaluate the sleep study numbers. It's not something I ever learned and right now I'm not able to do the research. I'm needing to limit the reading I do. There is a sleep technician over on the Neurology Support Forum (I think). Maybe we could find him/her by doing a search above on the orange block - upper R hand corner of this page. Maybe we could tease some knowledge out. They've offered interpretations before. But I think you are supposed to have some Stage 4 sleep. That I will look up tomorrow.
the other lab tests are hard to interpret without your lab's normal range. What is your Hg/Hct (hemoglobin concentration and hematocrit)? Anemia can cause cognitive dysfunction, aches and pains and sense of muscle weakness, memory problems - all because of cellualr dysfunction because of low oxygen-carrying capacity.
What is the name of the genetic disease? With parent, sib and child having it I would want to check if it is possible for you not to have it. Given a history consistent with platelet dysfunction and a history of iron deficiency anemia a recheck (and not a "screening test" is in order. When I know the name I can look up and see if you can not have it, yet pass it on.
I agree that the description of the MRI doesn't sound like it accounts for your problems.
Dizziness when you move your head may well be a type of positional vertigo. I recommend that you see a subspecialist of neurology called a Neuro-Otologist. They specificall deal with vertigo/dizziness. Is the dizziness caused by the "movement " of your head or the "position "of your head. Is it a vague feeling or a whirling? You canfind the name of a neuro-otologost in your state by going to the VEstibular Disorders of America VEDA website ) vestibular.org and searching fro a provider.
I hope this helps a little. If you could answer a few of my questions, maybe I'll have some ideas. Quix
You are definetely prepared for anything. That's great. I have MS and some of the things that you describe are the same as me. On the other hand my husband has sleep apnia and a whole lot of your symptoms sounds just like him.
It has come to my attention that anything relating to MS type symptoms is extremely hard to diagnose. Unless you have significant lesions and all, it takes the process of elimination to determine weather or not it's MS.
I'm sorry that I'm not any help but I do wish you the best of luck. Oh, by the way I also suffer from chronic pain which is due to severe nerve damage in my feet and legs. Do you suffer from alot of pain?
I pray you get a dx real soon,
Carol