Thalassemia Patients and Friends
Discussion Forums => Miscellaneous Questions => Topic started by: Dori on June 11, 2009, 01:03:32 PM
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Forgive me that I copy this from an email I send to an other group
At the moment I am dealing with this new issue. It started last week when I woke up in the middle of the night because of a swollen and painful left arm, but it did look fine in the morning. At Tuesday night my left leg started to act the same. Last night all limbs were swollen! My legs were both hurting and swollen, but only the left was feeling hot.
At this moment I can't really say of the right is still swollen, because it's not really painful. My mother touched my left leg and pinched in it (at the back, under the knee) and hurt like someone put 1000 needles in my leg. Now I am keeping a look at it by measuring the size of the legs. The problem is that if you don't know me, you would say that they are looking normal.
I was wondering of someone has an idea?
I don't want to believe it's an allergic reaction. Last Thursday I cut the dose with 1/3 so it will be unfair if it's that.
Note:
It feels like it is sleeping. I have had this feeling since I started Exjade. I thought, and still think, it's just bad timing but it's a bit strange. It came and it went. Now it stays.
Dore
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Dore,
Have you shown this to the doctor yet? Because of the possibility of a blood clot, I think you should be examined.
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No, no doctor yet.I will call tomorrow to the gp's office to see of I can make an appt for that day. You can only do that in the morning before 10am. I'll update tomorrow when I have done that.
Actually I thought it could not be a blood clot if I have it in blood legs, but the left is the worst patiënt at the moment. :stopmad
Thanks anyway,
Dore
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Hello,
My legs are acting almost normal today, so there is no need to call the hospital. And above all, I can't travel to Amsterdam today so I won't call anyway.
But I was thinking, doesn't Exjade chelate other minerals from the body then only iron? I have heard you can get painful legs due the lack of zinc and/or magnesium. Is that true? I can't find by myself any information about Exjade and mineral deficiency, so I ask for your help.
Thank you in advance,
Dore
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Wow, i was reading the posts of old thalpal group , which was on MSN but now that is moved to Multi-ply , and i found this ::
High Platelet Count in Thals Nov 30, '04 3:11 AM
by Andy for everyone
I was talking to a thal patient who told me that their latest CBC (complete blood count) showed a high platelet level. While normal is in the 150,000-450,000 range, the count showed it to be over 500,000.
What I was able to find was that high platelet count is common in bone marrow disorder patients and that levels approaching 800,000 can cause dangerous clotting problems. Although it seems to be more common in patients who have had splenectomies, it is also often seen in patients who still have their spleens.
Does anyone know more about this? Share similar experience? Is this level any cause for concern? Are blood thinners recommended? Would a natural blood thinner like vitamin E be of any help?
Andy ,
i m expereiencing the similar thing , i have expereienced Splenectomy and having the same platelets prob as you know my platelets count was doubled to the highest level of normal range , it was 800 and normal range was 200 - 400 and mine was above to 800 , its decreasing now but at that moment i was experiencing many probs like swollen and achy foot ...
Best Regards
Umair
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Some things that can be tried are daily vitamin E, one aspirin daily and elevating the feet when at rest. Try putting a pillow under your feet when you sleep (I have done this and it does help). A daily aspirin does make a difference when "thick" blood may be the problem. I have had problems with one leg on long plane flights. My doctor said take one aspirin daily. One month before I went to Singapore I started taking an aspirin daily and experienced no leg problems at all, even though it was the longest flight I have taken.
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Short answer:
Two weeks back I have been ask to be part of the promotion of a medical student which goes about the link between splenectomy and high platelets. I haven't been back in touch with them & I am not sure of I want to do this & of I uberhaupt can be participate in this since. In the letter I read that there have been done several research projects about this in the States. Next tx is planned for 24June so let's see how my platelets are doing.
Owh, If all goes well I will have also a consult @ 24 June.
Dore
p.s. due other health issues I am not able to take aspirin.
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To share some info here on high platelets:
Our doctors tell us to take an aspirin daily ( salospir is the trade name in Greece) and drink a lot of water. Although I have not experienced swollen legs, I have been taking salospir for the past 5 years and my platelets are within limits. Together with that, I try to drink a lot of water.
Lena.
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Hi ALL ,
The Doc of my Thal center sugested me to take Disprin when i discussed about high plateletcounts in my report , she adviced me to start taking Disprin, but i decide to wait and watch until my next visit to my Heamotlogist ( Dr.Joveria Mannan ) and since the doc of my thal center sugested that , i m waiting .... my platelets is in decreasing trend and coming toward normal ranges so i will wait untill my next Test date ... all i want to say that a doctor adviced me Disprin for high platelet probleme ...
Best Regards
Umair
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P.s : i want to clear that , Doctor who works for my thal center, she sugested me Disprin when i went for Tx last time but at the time i decide's to consult my HAemotolgist first before starting anything new ...
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Hello,
I don't have the time and nor the energy to give a good update.
I still experience this. Last night I was at a party and I was sitting in the couch. Suddenly my arm started to hurt very much. So I touched it and gave it a kind of massage. Within 5 to 10 minutes my fingers started to twinkling. (I think that's the right word; the dictionary says so). Also my upperarm became thick. It was like there was no life in. A huge part of the day I have still those symptons. I think even at this moment. My muscles around my elbow have some difficulies with moving my fingers.
I know that my family is extremely worried, but we wait patienly untill I can met the doc. My father still believes I have minerals deficiency.... I was scared when I woke up at Saturday morning, but I will tell that story an other time. BTW Last night I remember that my muscles started to hurt a year ago. I wonder of it all have a connection. My father suggested me this morning to quick with Exjade. The reality is that I took it for the last at tuesday evening. I am so busy that I just forget it.
Now I need to vent. DId I tell you that I got a message half on my way to college that my only presentation of that was cancelled? This has stolen my Relaxing day before the blood transfusion.
Friday, just before I left, I decided to open my email from college and to write down at which room I would have my presentation. Yes. would have my tutor wrote an email that she had to cancelled my presentation of year 1!!! This is huge presentation, lots of work and you need lots of concentration while giving the presentation. She wanted to move it to wednesday. I said it was impossible because I will in the hospital that day. At the end it was scheduled right behind the other presentation at tuesday. Now I can't relax at all. I feel miserable. Last night I have slightly ear- and throat pain, a runny nose and dizzy spells. I think I have a low fever too..
The orginally date of the blood transfusion was last friday, but I did postpone it. Otherwise I would have knock down on the sofa during the weekend. I hate to lose the tuesday relaxing day.Why? Because there is a redo planned at thursday or friday. It's a redo of a subject what don't really fit me. I will hear the result at 9pm. If my paper didn't get lost, because I am the only one of my class who makes it with the people who have extra time.
Tomorrow I must travel to Amsterdam (1h+), have a look at the exam, going to the hospital to give blood and at 2pm starts my exam. Problem? I don't get precendence. Is that bad? Yes, general waiting time is an hour!!! Can you go later that day? No.
Dore
p.s. At friday I had an Iraqian dinner in a centre of asylums. They gave us köfta's to eat during the weekend. I think that's the name. Kind of rice dough filled with meat or vegetables (vegetarian). I must bake them now for my family. We also had to take tea which my father likes back home. We refused but that put it in the bag of the bike when we didn't look! It's Orange Pekoe with cardemon...from Iran...taste excellent. It is difficult to accept those presents. We got everthing, they get nothing and get stop givin presents.
p.s. Don't forget to cross your fingers and toes for me! (I have difficulties with this subject; it's the introduction of the subject above)
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Dear Dore,
I hope that you feel better soon. Have you had neurlogical testing? I am more inclined to say that the issues you are experiencing are due to stress - which causes the muscles and nerves in your back to become tense - also leading to problems in your limbs. However, you should have a doctor look at your for these symptoms.
I am sorry to hear about your stress with the presentation that must be so tough after all of your hard work and presentation. I hope that this issue is resolved.
Please keep us posted, I am keeping my fingers crossed for you,
Best,
Sharmin
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First of all I passed the exam :smileblue (This don't mean that I am happy about the mark. I passed it with the minimal: 5.5)
neurlogical testing
I have such testing before. 1.5 week ago I had have also an episode of shaking hands. It's so worse that you can not feed yourself. Even a spoon doesn't help, because it falls off from it and you can not reach your mounth. I heard recently that more people with anemia has it. I must say that I heard this news out the DBA area.
Have you ever heard of it?
It's time to find my bed.
Read you all at the end of the week,
Dore
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A couple of things to be investigated if you're experiencing tingling, numbness and tremors (shaking) are thyroid and thrombosis (clotting). Combined with the recent swollen legs, it does make clotting issues a possibility. Are your platelets high?
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A couple of things to be investigated if you're experiencing tingling, numbness and tremors (shaking) are thyroid and thrombosis (clotting). Combined with the recent swollen legs, it does make clotting issues a possibility. Are your platelets high?
Yes, my platelets are getting up again. There was quite a huge drop when my ferritin dropped too. At wednesday I will hear the new results.
As for the shaking hands: I wasn't very clear, but I have this since a very young age. I think I was 10 when it happend for the first time. They never were able to find a cause.
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Hi Dore,
Hope you recover soon with your symptoms. Are you stressed and do you feel like it could be panic attacks. I had those some years ago, tingling in the fingers, numbness, fainting and shaking of body. My mind was blocked and I could not think clearly. These usually occurs when you are stressed and really worried about something. The real way to counter them is to not think about your problems and take some stress tablets (your doctor can prescribe them for you).
Your symptoms can be due to other causes as well (like Andy has mentioned). Please explore your options and let us know.
Take care.
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I am destressed. I got unofficial my peopedeuse!!!! I don't think I really believe it yet, because I am prolly not so happy as the world expect. I will meet my doctor at friiday.
I am having a transfusion at the moment. Later than everyone expected because the lab forgot to match my blood. If possible I must give them blood 72hours before. They refound my blood and match it within half an hour:s
My father will pick me up at 2pm to have lunch and tonight we will go out for dinner with my grandfather. This means always that we will bring the Chinese a visit! It's the only place he eat normally untill a lot. No rice ofcourse because that's naughty to his teeth.
At Monday I will restart to act as a normal forum member;) I remember I came across a few interesting article when I was having a break between the dates with my books.
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I hope you will have a great day. Bon appetit :wink
manal
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Thank you. I had.
My results:
I am not sure which one i shoud post. This are the ones who have been tested between 6th May and now.
hb:
hematocriet
M.C.H.C.
M.C.H
M.C.V.
Leucocyten
Thrombocyten
Basofielen
Eosinofielen
Neutrofielen
Lymfocyten
Monocyten
Natrium
Kalium
Kreatinine
GRF (MDR formule)
Alk. fosf. 37C
LDH - 1FCC
ALAT (very high at 20th May)
ASAT
Bil. totaal
Bil. geconcentreerd
GGT 37C
Ferritine stays stable around 1050
My trombo's normal lab: 150 - 400
06 may: 386 (low for me)
20 May: 446
03 June: 336
22 June: 410
Situation now: Completely stopped with Exjade since 8 days.
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Have you seen improvement in your condition in these last 8 days? I don't think that your symptoms are exjade related, and you are more likely to have more trouble if your iron levels increase. Especially if you have had the shakes etc since you were much younger - before starting exjade.
This is just my opinion, I cannot be sure,
I hope that you feel better really soon my friend,
Sharmin
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Tomorrow in meet my doc. So if you think i should ask this or that; share it with me!!!a
I share Sharmin's thought. I never believed it could be Exjade. I have it at this very moment.
I kinda stopped because of study. The reality is that I forgot it. I moved it to the time I was going to sleep. Moste of the time I remember about it when I laid (sp?) finally in bed. So it doesn't take a lot of energy to wait for asaturday
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Good luck Dore in your appointment, please update us
I think you should ask him about
1- any subsitution for chelating iron when you are off from exjade
2- explaination for the swollen legs
3- are any of your troubles related to vtamin or mineral deficency
4- whether it is good for you to start L-carnitine for its huge effect on all the body muscles including the heart in addition to being an antioxidant and i addition too to its benefits to the blood
manal
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GOOD LUCK DORE :goodluck
Umair
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Hello,
My appt:
Doc was very happy for me that I have my Propedeuse. He must have told me that 5 times!
He was also happy about medical things. It turns out I am one of his patients that are in good health.
He told me to start saturday immediately again Exjade. I had kind of the same plan, but now no other option.
I have a good ferritin level. He suggest me to do during next college year an other round of 3 months with 1500mg Exjade to get it down to 800. I think you all know how difficult it is for me to wait untill I am able to do that!
I also have a paper to do blood tests for normal stuff (including match blood), magnesium, calcium and zinc. We'll see. Next transfusion starts at 9h00 (!!!) on 8th July.
However doc believes we will never be able to find the cause of the swollen legs. It looks like they get swollen, but after measuring I can tell that they don't. Only hot and twinkeling.
When I started with this post I remember that I didnt had any Exjade this morning. Not really my fault, breakfast was already placed on table with the look "I contain everything".
I hope you all are having a good weekend. This is gonna be my 3rd day with thunderstorms. I do like thunderstorms :wink
Best wishes, Dore
p.s. next year I will also start with more osteoporosis treatment (biosphates???) and there was something else I wanted to say but father disturbed me. We are celebrating Father's day today. I know, a week too late. I had to clean the cat the eyes and watch a piece of the documentary about Federer. His mother is from South-Africa and his father is real Switzer with such moustache :)
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The swollen legs issue is still with me on (almost) daily basis. Last night I had a VERY uneventful experience. I can not explain it very detailed, because I am very, very tired. Last week I restarted again with 1000mg Exjade and insomnia has come during day 4.
Last night my RIGHT leg started to have this twinkeling leg problem. It took more than 4 hours, before it was gone. It was horrible and nothing did seem to help. Untill I decided to put the back of my bed in the highest stand. That was the solution for the leg, but my hands took it over. However, after 10 minutes it was all gone.
Tomorrow I will go to let them take blood for tx, Exjade stuff AND minerals. Let's hope they will hand in them at Wednesday to me.
Owh one more thing - my legs has white spots. I don't think it's related to this, but those white spots are really strange!
Thank you in advance,
Dore
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Hi Dore,
Tingling, numbness, swelling and white spots are symptoms of poor circulation. Has your doctor examined you for a blood clot? Do you get any pain in a specific spot in your legs? Anything that feels like a bruise?
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Dore,
Please check with your doctor, but special stockings are available that can improve your circulation and reduce swelling in your legs. I agree with Andy, this issue is likely related to circulation and may indicate clotting. I hope that your doctor does an ultrasound of your legs.
Sharmin
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He won't do that. I believe (and many others) that he's the best doc in the Netherlands, but that doesn't want to say that I believe I do get the best healthcare. I am not pessimestic, it's only how it works here. (If things worsen I have given my friend the word that I will go to the ER)
I will wait for the blood results though. I will see my doctor again in the beginning of September.
pain: calf(s)
I must confess that I do agree with your diagnosis. I didn't want to post it here, but I do think it is poor circulation. Sometimes I scary wonder of it's my heart. My breathing is often weezing (like a mouse). I am contstanly out of breathe. I can't even walk stairs normally. And I was able to do that in the past. The good old times, eh?
Is it possible that you doesn't have this symptons all day long?
Thank you both :ty
Dore
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Quick: all blood tests came back as good. Though i wiil post some later. I have developec horrible pain and take paracetamol to fight against it. I am off to bed.
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Dore,
I am so sorry to hear about your pain,it seems like you are constantly fighting with one thing or another,please take care of yourself and keep updating us :getwell .
Zaini.
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thank you. I forgot something: i developed the pain after blood transfusion.
Both feet are naughty twinkeling since I woke up. However its time to clean up the garage!
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Dear Dore,
I am so sorry to hear that you are in pain. I hope that you feel better very soon, and I am glad that your blood tests have come back good. I really wish that your doctor would do an ultrasound of your legs.
Sending good thoughts your way,
Sharmin
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I'd forgotten about this topic (is this a correct English grammar).
I experience all the same again. First I feared my exams (now still waiting for marks) and now I fear TIF Conference. My legs are very painful and I have the idea they are swollen too. But I won't risk the conference. However if it stays like this I might arrange an apt but tell immediately I am still going to Turkey. The pain I experience since a month is so painful that it do not let me sleep. I wonder of I should take lots of fluid (i am not good in staying hydrated) and see what happens. What do you think?
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Dori,
I am sorry if i missed it but have you ever had your D levels checked?
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Yes, but I believed I did not play the legal game that time. I plan to see my hem after the conference and will ask then. I am still waiting to redo the Dexa Scan too. I assume it is handy to check vit D levels at the same time?