Sticky Blood-Hughes Syndrome Support
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Overall weakness

I am on Coumadin and my INR stays between 3.2 and 3.9. My limbs are extremely weak and getting weaker. I have decreasing strength and can rarely do basic tasks. As an example: I cannot sit up or get out of chair without help.

The doctors cannot identify the problem. They have suggested Multiple Sclerosis, slipped disc or kidney stones. They have prescribed pain pills, antibiotics and muscle relaxers. Sometimes they ask ME if I think it might be related to "that blood disorder thingie" that I have. I know I need better docs but that is all we have in this State.

Is these symptoms that anyone here has experienced related to APS?

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Ok, that sounds tricky so, what were your latest readings for vitamin D, B12 and Iron, it is important to get a print out as sometimes being in range, and being told all is ok, can mean you are at the bottom of normal, which is not great. My daughter currently has great D levels, but despite Spatone Iron daily and sublingual B12, very low folate and ferritin and various signs of a B12 deficiency disorder, she starts her B12 injections today, This is something quite often missed. The other thing is poor thyroid function. The doctors in the UK often only do the TSH test, it is not fit for purpose and does not show the whole picture. If your Iron is low at all it will not help your Thyroid work etc. It is not ideal but I pay for extensive private testing for my family, (we can ill afford it), but it is worth doing. The sort of tests I do are like these:

My daughter was getting weak, pins and needles etc, and this is a girl who walks daily, and eats properly. I will also add that the testing showed up that my Thyroid function was appalling and that I myself needed more B12, I did my first round of testing 6 years ago, and improved my health immensely.

bluehorizonmedicals.co.uk/t...

You can order them yourself, and I can pass on a twenty percent discount code for you if of interest:

MaryF

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As always Mary, you re big help and source of information. Thanks. I don't know of a way to collect blood samples here in the States. The Medicals keep pretty tight control on their turf. I will check though.

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You need to tell your doctor you want those tests done. My dr. usually cooperates. I live on Long Island New York. All the things Mary said are right on. I would follow her advice. Feel better

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Thanks. Good advice about getting good advice.I will copy her comments and present to the Wizard behind the curtain for approval.

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you will probably find some private testing companies or perhaps briefly through a functional medicine doctor, they are more likely to test you for these things, but if any of this is not right you will not be running so efficiently so to say, I used to be like that. MaryF

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and yes I agree with this also:

MaryF

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Live your sense of humor. Let me know what your wizard says lol

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Hi DannyBoy, I have Hughes Syndrome that went untreated for 17 years. Had back surgery & the graph didn’t take. Repeated the surgery with a much more extensive fusion. Followed by giving me hard packed red cells. According to Prof Hughes that thru off my platelets. After 3 years of listening to drs here in the USA telling me I had MS or saying you don’t have MS but I don’t know what you have I went to see Prof Khastma & Prof Hughes. Once I started the Clexane my memory came back, walking was better, & I was stronger. But unfortunately the last 5 years have been I struggle. First off I am allergic to most fillers put in the US medication. Europe definitely has better medication. I go from being really strong to being really weak. It seems to be what Mary told you but also & mainly the thickness of the blood. I was on warfarin from the UK with a INR of 4.2-4.5. I was much stronger. I was unable to get the same Coumadin. So I am on a different Coumadin which seems to be a little weaker for some reason maybe the fillers make a difference.

So the lower INR the weaker I am. Less activity will lower your INR, diet can also affect it. I do pool therapy 2x a week for 1 hour. I exercise on my own. I still cannot do what I use to do. I think my nerves are the problem. Pay attention to your body, start a journal.-when are you weakest-after a meal, in the morning etc.... when are you stronger. Then look for a pattern. Prof Hughes was real big on learning how you feel . Best of luck. Keep Moving. Designer16

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Thanks for your story. I begin t see a familiar pattern.

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I tried earlier to respond and thought I pressed reply but it seems to not have worked. If I am repeating my response please forgive as I do not see my earlier response on here. I also sent you a message a few weeks ago and again am not sure it worked. Please know that I am praying for your health and will be checking on your via message. As for the D3 and B12 and anemia I truly needed to chime in here as I found out that I was highly deficient here and began taking extra and my energy and movement rose higher and higher. Also my magnesium and potassium levels were low and I bumped them up along with folic acid and NO GLUTEN. It was a night and day difference even though other barriers remain. This change certainly helped significantly. It was hard to grasp that something so simple would offer so much support joint and energy wise. Our blood simply struggles and we must do what we can to help it along. Praying ....DannyBoy1

Becca

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Thanks Sis. I got it.

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I'm rooting you on brother....

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Hi I feel weak when my iron stores are low, I am not anaemic but when I don't take my iron medication I start to feel really weak again and sleep all day

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Sorry to hear your not well. Hope you get to the bottom of it soon. Feel better.

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What state do you live in, Danny?

( Besides not a happy one, at the moment!)

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Boise, Idaho

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Ok. I’m at a loss, there.

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Kelly: what have you lost?

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Any good ideas for help in Idaho for you.

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Except.... my sisters best friend is Jane Dater, and her hubby is Phil. He is a radiologist. I grew up with them. They are there. I think he has retired now. Let me find out who he recommends for top hematologist, or do you likely already know?

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Kelly: Yes! I'll take all the help I can get. Feel free to send

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Dr Phil Dater has a doctors appointment tomorrow himself. ( with the St Luke’s system.) He is going to ask his doctor for a hematology recommendation on your behalf. He told my sister he is no longer really knows the hematologists. ( he has a silencer / ammunition / arms business he developed. ) He is busy with that since he retired from medicine. He was in Albaquerque NM for many years . His wife and my sister were college room mates/ nursing school.

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Dr Travis Williams . That’s who dr Phil Dater’s Dr ( Leslie) recommended you see for Hematologist.

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Thank Kelly. He's a very nice man but knows virtually nothing about APS. I saw him when we first arrived in the area.

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Shoot. I was worried when I saw he was only a DO. ( not that it always matters. I know a few people have have better luck with DO’s than MD’s...)

Ok. Well. Square one.

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Danny, I'm terribly sorry you're having such a rough go at this. A disc out or nerve being pressed on would surely answer with loss of muscle strength. Have the doctor(s) offered to scan your spine with ct or mri? That seems very reasonable. Personally I would demand a full scan on the entire spine to "rule out" this possible issue. Sincere wishes for your improvement.

~ Blue Skies ~

Dave

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Yes, I've had X-rays of the spine. Clearly misaligned in multiple places. The chiropractor is working on it but is not confident that is the entire solution.

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Unfortunately x-rays will not show as clearly as a MRI or cat scan. Hopefully you can get that approved with insurance company "using the words to rule out a slipped disc or pressure on a nerve". Best wishes

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I’m pretty certain that Medicare won’t cover such a consult, but if you can, I suggest consulting with a functional medicine doctor. The intricacies of overall health’s dependance upon gut bacteria — which used to be considered enemies, not allies — is still developing. All I can say is that the 3 dramatic changes in my health were : 1 diagnosis with APS and starting warfarin; 2, accidentally discovering I am gluten sensitive and staying on a gluten free diet, and 3, seeing a functional med doctor and, under her guidance, restoring a healthy gut biome and discovering I was eating a food I am actually allergic to. (Cashws! Of all things!) Eating healthy definately costs more then eating cheap. But it is a rare day now when I eat processed foods.

Gina in West Virginia

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Gina: Just when thought I've heard it all, I learn a new phrase. Functional medicine doctor is a new description to me. I will look into it. Thanks!

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I have become quite passionate about this, but I’ll try not to make this too long.

The name “functional medicine” is used because the practitioners believe that most modern medicine treats the symptoms of disease. The real, functional causes tend to be enviornmental, which, in US case, is usually diet and lifestyle.

Traditional doctors, (who probably never had a single course in nutrition in med school) call this hokum. They have their hokum reasons: First, if you are looking to compare dietary changes with measurable health outcomes with the extreme details which the scientific method requires — you are just not going to do it. Not unless you have a group of 200+ genetically identical people and both the control and experimental group are under audio and visual monitors 24/7 to insure that we really do know what they’re eating and how they are moving.

Second, Big Pharma has no financial incentive in functional medicine. Why, what would happen to their bottom line of all pre-diabetics were identifed and changed their lifestyle and never needed to purchase Trulicity? And, post Ronald Reagan, nearly all medical studies are funded by and for Big Pharma.

Third: As mentioned above, nutrition has heretofore played practically no role in medical training. Despite the growing body of data from 50+ years ago that people in different parts of the world eating different foods have extreme variance in autoimmune diseases, diabetes, cancer and dementia.

I headed up to Cleveland Clinic’s Functional Medicine in 2016 after hearing that doctors, such as Dale Bredesen at the Buck Institute in CA had reversed —- yes REVERSED!— ALZ with dietary and lifestyle changes. I did, and do not have mild cognitive decline, but so many of my ancestors did that I decided to take the financial gamble and invest the time and money. The FM doc did blood work, was not happy with some of my so-called normal numbers (she wants optimal, not normal) and put me on a restrictive diet: no carbs, lots of green leafies ( I upped my INR draws and eventually increased my warfarin from 7.5 to 9mg daily) and lots of healthy plant based fats, such as avocadoes and nuts. And I now feel wonderful! (Excepting for that bone on bone arthritic knee.)

You could always read up on this (CC FM is run by Dr. Hyman, who has a number of books out) and just try the dietary modifications recommended. The advantage of actually seeing a FM doc is from the diagnostics — again, the goal is not to say your blood values are “normal/“ the goal is to reacch “optimal.” The dietary modifications good for one person, may not be good for another. The most glaring example would be ketosis: good for most people, not good for others. Difference usually spelled out in detailed history and blood work.

ANd, if interested, Dale Bredesen’s book is “Awakening from Alz.” He also was interviewd by Peoples' Pharmacy and that podcast is probably still available on their website.

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Is it muscle weakness with pain or just weak and feeble kind of thing?

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Both. I've have constant arthritic pain along with muscle weakness that varies in intensity. A long night's sleep (rare) usually improves things noticeably but then as the day progresses I always wind down into disability. Yes, I take a brief daily nap just like an old codger. If I get a lousy nights sleep, it all goes downhill faster and sooner....sounds like a need more sleep.

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The reason I asked was because I too have painful disintegrating joints, knees, elbows, shoulders mainly but my arms are causing me problems lately. Ok the elbows were hurting when lifting and moving things or myself about but now I'm getting pain both above and below the joint spreading down my whole arm and feel as though I have no strength to move myself across the bed, change position etc. I do now sleep all night thanks to the Morphine but the past month or so have started falling asleep throughout the day for hours at a time. I've seen my Gp about this and a few other odd symptoms that may not be related and I'm currently waiting for blood test results to see if anything shows up.

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I see that Quest Lab doesn’t have an office in Boise. They are a lab chain that does testing by patient request. Is there another chain there that you could check with? I don’t have any idea of pricing, but you can get it done privately at these places and then hand carry your results to the doctor.

Good luck,

Anita in Colorado

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It's a good idea. I will check Monday with one person I know that may help. I am so used to waiting for the Doc to order labs.

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I’ve heard from someone with a “good” APS doctor in Boise, Idaho: Dr Williams, hematologist at St Luke’s Meridian, give a call, let us know how it goes. Hope you find success with this. I put several “feelers” out but not many responses except this one. Best of luck, Cindy

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