Swollen legs

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

Dore,

Have you shown this to the doctor yet? Because of the possibility of a blood clot, I think you should be examined.

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.  

Thanks anyway,

Dore

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

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

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.

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.

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.

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

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 ...

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)

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

First of all I passed the exam  (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

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?

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.