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Moyamoya Related Topics >> Moyamoya Related Information and Support >> Swelling in left leg http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1128024427 Message started by lsuvia on Sep 29th, 2005 at 4:07pm |
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Title: Swelling in left leg Post by lsuvia on Sep 29th, 2005 at 4:07pm
Hello everyone!
I have been having swelling in my left leg. Around the ankle, the swelling is starting to travel up my calf. Does anyone else have this problem? lsuvia@yahoo.com |
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Title: Re: Swelling in left leg Post by Roni on Sep 29th, 2005 at 7:27pm
Probably nothing serious, but get to the doctor and get checked ASAP. Want to make sure you don't have a blood clot or anything else going on.
Best, Roni eolsen6400@aol.com |
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Title: Re: Swelling in left leg Post by Shan on Sep 29th, 2005 at 8:01pm
lsuvia,
Do you have MM? This is the first I've heard of something like this relating to MM, but I'm learning as I go myself. At this point, though, a swollen leg could be a number of things. Especially because it is progressing further up your leg, I'd get it checked out immediately. Let us know how things go... Take care, Shan |
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Title: Re: Swelling in left leg Post by lsuvia on Sep 30th, 2005 at 8:44pm
Thank you for your quick responses! I do have MM or atleast the doctors say so. My symptoms have subsided (no heachaches :)! and my numbness in my arms/fingers have minimized). I'm still on 325mg of aspirin and Zocor to lower my cholesterol.
I called my neurologist - they don't think it's related to MM, but I'm going to keep an eye on it this weekend. If it doesn't get any better, I'm going to see my dr on Mon. have a good weekend. lsuvia |
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Title: Re: Swelling in left leg Post by Nancy_N. on Oct 1st, 2005 at 12:30pm
Isuvia,
You said I have MM or at least the doctors say so. Do you know for sure? You are in the same state as the best MM specialist there is Dr. Steinberg at Stanford, read some of the posts on here and you'll see what a great MM specialist he is.....my point is if your not felling really sure if you have it ....and you really don't sound like you are sure by your comment maybe your first step is to see if you really have it. Dr. Steinberg will know for sure. Is it o.k. to take Zocor if you have MM? Just because your symptoms have subsided doesn't mean you can just let it go for now. It is a very, very progressive disease and you don't want to wait until symptoms return or you have a major dibilitating stroke before you have surgery. You may not need surgery right now but things just sound so unsure. Many, many people on this site have been told they do not need surgery right away only to go to a MM specialist and find out that they do. The majority of cases are not told to hold off on surgery because it is so progressive and can cause strokes. They're are Doctors that say they're MM specialist or know what it is or have heard of it but it NOT what a MM speacialist is, a true MM specialist knows how to treat the follow up after surgery and know when you need surgery and the right type of surgery as there are a few differnt types. please look into this further! My daughter was misdiagnosed for a year prior and ended up having 4 strokes at 20 yrs. old and it has changed her entire life, she needs alot of assistance, and that will be for the rest of her life. I'm not telling you this to scare you but to let you know you need to get a handle on this A.S.A.P. Ask questions on this site as many as you can, and read, read, read just about everything you need to know is on here. Oh and welcome to the site. Nancy |
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Title: Re: Swelling in left leg Post by Shan on Oct 2nd, 2005 at 3:24am
lsuvia,
I wanted to mention one more thing...Speaking from experience, those of us with multiple medical challenges other than MM sometimes run into obstacles because doctors aren't able to treat us like they would a "normal" patient (one w/o MM). Instead, they have to take into consideration that we do infact have MM, and other factors come in to play. So, what I'm trying to say is basically reiterate what Nancy wrote about you finding out for sure if you have MM. Even though your swelling may not be directly related to MM, how they treat you may be determined by whether or not you do have MM or not. (I hope I'm not confusing you... :-/) What I always recommend is to send your films to MM specialists for their review and recommendations, and after you gather and compare all of them...then you can make your decision on what to do next. Please know that it wasn't until my THIRD opinion that I was properly diagnosed with MM. I was only being treated with medications alone (aspirin and Plavix, then aspirin and Aggrenox), which did help "minimize" the symptoms for a brief period of time; however, surgery was the only option to ensure I would have enough/proper bloodflow to the right side of my brain for the long term. I personally don't think that medications alone would've worked for me. [smiley=twocents.gif] I too don't mean to scare you...I just don't want others to walk in my shoes. I feel blessed, even if my surgery was an "emergency" surgery, to have been finally properly diagnosed. I do hope that you get to the doctors to check on your leg on Monday....better to be safe. ;) Let us know how it goes. Take care, Shan |
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Title: Re: Swelling in left leg Post by lsuvia on Oct 2nd, 2005 at 11:41pm
Thank you all so much for your concern. I am going to see my doc on Tuesday...just to be safe. I met with a Neurologist on Fri at UCSD Med Ctr in LaJolla. Unfortunately, he couldn't confirm if I had MM because he didn't have my cerebrial angiogram! The angiogram that I had in Aug '03 showed MM. Unfortunately, my treating Neurologist is out of town until 10/14 (he's the one that said keeping taking aspirin & Zocor and come back in 3 mos).
My mental capacity is not up to where it was before the TIA. I'm not ready to return to the work field, but my primary dr says "since you don't have MS, I don't think you're goig to qualify for LTD". I've completed my SSI paperwork. Sorry, I didn't mean to dump on you all. I'm going to push for a 2nd opinion with a MM Specialist. I may end up going to one at UCLA Med Ctr. Take care |
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Title: Re: Swelling in left leg Post by Shan on Oct 3rd, 2005 at 2:13am
lsuvia,
I'm so glad that you sought medical attention last week Friday, although, it seems like he/she wasn't really able to provide you any answers you may have been looking for. Was your last angio in 2003? Hmmm...did he/she suggest doing a more recent test? Maybe not necessarily an angiogram right off the back, but maybe an MRI/MRA, CTA, SPECT or any other type of test? I'm thinking that maybe another test should be performed since your last one was done about 2 years ago, and things could've definitely changed/progressed since then. [smiley=twocents.gif] You brought up a good question. I wonder if anybody has filed LTD due to MM. [smiley=huh.gif] I too was told to look into filing SSI because it takes 2 years to begin receiving benefits. Is that what you were told? Was the process difficult? Hope all goes well with your appt on Tuesday... Take care, Shan |
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Title: Re: Swelling in left leg Post by LDG1040 on Oct 3rd, 2005 at 9:01am
lusuvia,
Since your angio is from 2003 and like Shan mentioned, things could have progressed since then, (IMO) I would seek an updated evaluation from a MM specialist such as Dr. Steinberg at Stanford. I'm really concerned about you and the swelling. (IMO) I wouldn't wait to get re-evaluated by a MM specialist. I would get re-evaluated ASAP. I'm not a doctor but I'm concerned about the nonchalant attitude being portrayed by your doctor. I have a brother who had a significant stroke before he was diagnosed with MM. I'm not trying to scare you I simply don't want this to happen to you. MM is a progressive disease with no cure. However, there is treatment. Strokes can be minimized or avoided l if you are properly diagnosed and treated in time. I would feel much better about your situation if I know you have called Dr. Steinberg at Stanford or another MM specialist for a second opinion. (there's only a handful of actual MM specialist in the US) Also, You can apply for Social Security Disability benefits and possibly receive SSD benefits based on your salary and the number of years you have worked and contributed to Social Security. However, the qualifications to receive SSD are very strict. You have to have been disabled for 5 full (calendar) months, your disability is expected to last 12 months or end in death and you are unable to be gainfully employed at ANY occupation. You can contact an attorney who is a SSD benefits specialist for a consultation. They usually don't charge for an initial consultation. lusvia, I'm concerned about you and want only the very best for you. Please let us know how you are doing and if you sought a second opinion from a MM specialist such as Dr. STeinberg at Stanford. Hugs, Lore |
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Title: Re: Swelling in left leg Post by lsuvia on Oct 3rd, 2005 at 12:45pm
Good morning! My angiogram was in Aug of 2005. I probably typed 2003 by mistake. I've already had all the other tests MRI, EKG, EEG, Cerebrial Angiogram. I tried t contact Dr. Steinberg in July, but that was before I had the rest of my tests run. Plus, I needed approval from my insurance (HMO) before I could send the forms (according to Dr. Steinberg's asst). Maybe I'll try contacting them again since I've had the rest of the tests run.
The swelling in my ankle is going down, but I'm still keeping an eye on it. I've learned that I can't rely on my dr. to keep my name in the forefront of his mind. I appreciate all the info/concern you are sharing. p/s: What's (IMO)? Take care, lee aka lsuvia |
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Title: Re: Swelling in left leg Post by shgr on Oct 3rd, 2005 at 12:46pm
Hi!
In terms of getting disability "benefits", you may want to look into whether you had a TIA (transient ischemic attack) or a regular stroke. I am not trying to be obnoxious with semantics, but if you are experiencing a continuing decreased mental capacity, you may have had a regular stroke, not a TIA. Just a thought and I would imagine the SS people would be more likely to respond to a stroke than a TIA...but I maybe way off base? Glad you have been seen by a doc. about your leg. Did they look at possibilities not related to MM? Must be hard for you. I hope your leg does not hurt too much. Good luck and take care, Stephanie |
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Title: Re: Swelling in left leg Post by lsuvia on Oct 3rd, 2005 at 1:09pm
Hi Stephanie,
I had a TIA not a stroke in May. My mental capacity is not diminishing - it's just not coming back as quick as I thought. :-/! I did mention this on my SSI application (how I can't concentrate long enough to complete a task & the "bubbles" I get in the middle of a sentence). The "bubbles" must be contagious because everyone I'm around gets them too! Thankfully, my leg doesn't hurt. Have a great day! lsuvia |
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Title: Re: Swelling in left leg Post by Sara on Oct 3rd, 2005 at 3:00pm
lsovia:
IMO means "In My Opinion"... Just to let you know... :) There are all these crazy acronyms and they are hard to keep track of. ..... Your leg REALLY scares me. My husband was having swelling in his ankles and we didn't think too much of it. Then, he had a heart attack and we learned that was a sign.. I think it can be a sign of water retention, high blood pressure... poor circulation. BTW, I am the one with MM, not him... I am sorry to hear your Insurance is such a pain. Get on the folks at Dr. Steinburgs's office! I think immediate attetion is needed! So you say TIA singularly.. Have you only had 1? Is this was made you go to the doctor? What other symptoms do you have? We are all concerned for you and want the best for you! Take Care, I'll say a prayer for you! Sara |
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Title: Re: Swelling in left leg Post by shgr on Oct 3rd, 2005 at 5:20pm
Isovia,
Thanks for your response. I agree with Sara about worrying about your leg. I asked about your TIA b/c I was told by my doctors that if any (stroke-related) symptoms remained or were not transient once the episode was over, then the episode had to be a stroke, not a TIA. In-other-words, TIAs do not cause any permenant damage the brain, so they cannot cause permenant or on-going symptoms. But, I could have gotten this all wrong! In my early days after my stroke and the following TIAs and seizures, I was soooo freaked out and on many new meds. It was as if my head was underwater. Who knows!!!! ;) Take lots of care, Stephanie |
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Title: Re: Swelling in left leg Post by lsuvia on Oct 11th, 2005 at 12:54pm
Hi Guys,
My husband and I met with my primary Dr. yesterday. He checked out my ankle (the swelling has gone down). He didn't think it was MM related, but he agreed that not many Docs know about MM. He is agreed to mail my rpts to Dr. Steinberg. I'm meeting with my Neurologist on Fri and see if he agrees to do the same. My headaches have returned - not migraines, thank God! My doc is also extending my disability for 6-8 more weeks. My husband is/was concerned that if he (doc) released me to go back to work, I am not mentally [smiley=confused2.gif] ready to go back to work. I'm stll mixing up words, not responding as quickly as I used to, I also am not able to make mathematical calculations like I did before the TIA (aka B-TIA). How many of you returned back to work? Have a wonderful day! Lee :-/ |
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Title: Re: Swelling in left leg Post by Shan on Oct 11th, 2005 at 1:20pm
HI Lee,
I had my double bypass STA-MCA, as well as an indirect on May 27, 2005, and I am still not back to work. I did try going back for 1 week, but unfortunately, my pressure shot up and my headaches returned. I've been told "not to rush things" although, I truly miss work..especially all of my co-workers and especially my boss. Looks like though, I may be out of a job at this point. :-[ I'm so glad to hear that your primary dr. is sending your films to Dr. Steinberg. Even if your neuro doesn't want to, you can always obtain your records/films yourself and send them yourself! That's what I would do if your neuro doesn't want to send them out for second, third opinions, etc. [smiley=twocents.gif] Only you can be as assertive as you want to...to be sure you get the best care necessary. Remember, it wasn't until my THIRD opinion that I was properly diagnosed. ;) I'm also so glad to hear that your swelling has gone down. Did your dr. say what he thought it was? Well, glad to hear the good news. ;) Take care, Shan |
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Title: Re: Swelling in left leg Post by lsuvia on Oct 18th, 2005 at 10:02pm
Hi Shan,
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Title: Re: Swelling in left leg Post by Shan on Oct 18th, 2005 at 10:46pm
lsuvia?
I can't see your message. :-[ Shan |
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Title: Re: Swelling in left leg Post by lsuvia on Oct 18th, 2005 at 11:43pm
Hi Shan,
Oops, I got trigger happy. ;) I met with my neurologist on Friday - he doesn't think I'll be going back to work. He will recommend I go on LTD. I meet w/SSI on 10/29 (their mental docs). My neuro is actually going to send my films to Spetzler (Phx) because my doc thinks it may be beneficial for me to go with the Indian Health Svcs in Phx (my insurance is HMO right now). I'm full-blooded Navajo from NM. So, how many surgeries have you had? My doc(s) didnt know if the swelling was MM related - I don't think they knew. I've gotta run! Take care, Lee |
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