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On-Going Symptoms- HELP!

PostPosted: March 10th, 2014, 1:23 pm
by scaredofsymptoms
Hi Guys,

I posted earlier last month about having a bad check up with my neurologist. I went back to perform additional tests/bloodwork and wanted your opinion.

I'm a 27 yr old female by the way and the muscle pains and twitches (my twitches are subtle and that scares me -sometimes they feel like something under my skin- they are not the big jerking kind) have been waxing and waning in my hands, fingers, thumbpad, palms, feet, ankles and calves since beginning of the new year in January. One day it will be my left hand, the next its my right foot....etc.

I ended up having a clean MRI with and without contrast to rule out MS and a clean nerve test.
I'm not sure what he called it, but I was shocked all over the place to rule out peripheral neuropathy or nerve disorders and he said I passed with flying colors and was extremely healthy.
I insisted on an EMG even though he thought it was not necessary and had a clean EMG in both arms and legs.

The only interesting thing to come out of my neurology appointment was my bloodwork.
I've been on prilosec OTC since November for a separate issue with 2 small breaks (less than 8 days each time) to get an endoscopy done and to see if my acid reflux symptoms would improve without prilosec. I was diagnosed with mild gastritis and reflux and will be trying to wean myself off of prilosec in the beginning of April with my gastro's consent.

The interesting thing to note about my bloodwork is suddenly my iron absorption is way off (range in test was 15-150 and I was at a 12 - so low and not normal) although my RBC and hemoglobin were normal so I don't have anemia. My general practitioner has chalked this up to the prilosec usage and my lack of gastric acid since being on the pill.
The other thing that was off was my vitamin D level (range was 30-200 and I was at 29, so just below normal).
My neuro didn't mention anything but the low iron to me. I only found out about vitamin D since I always request a copy of my blood work.

Could the vitamin D and iron malabsorption be causing my hands to feel crampy/stiff, achy, thumbpad twitching, and my feet and legs to be achy, sore, twitchy, etc?
I was at a wedding this past weekend and stood for 5 hours straight and I thought i was going to die! my legs were so sore and achy!!! :oops: :?
It scares me because the "dreaded *ls" starts in hands and feet and that is where all my issues lie! I am trying to be rational about this! HELP!

Re: On-Going Symptoms- HELP!

PostPosted: March 10th, 2014, 4:28 pm
by scaredofsymptoms
This is just so frustrating.
Today it feels like I am struggling to lift my right foot up when I am walking, but when I look down and walk I am doing it fine.
I get this crampy/stinging pain in the middle of my palms and feet/arches of my feet and it really makes it feel like i am fighting my feet.
They feel heavy and like I have to focus on lifting them. So now of course I am hyperfixated on it. I was fine yesterday. I had a bout of this for 2-3 weeks that went away and then into my hands. Now its not in my hands and back in my feet. WTF!!!!

Re: On-Going Symptoms- HELP!

PostPosted: March 12th, 2014, 1:21 pm
by scaredofsymptoms
no one? :oops: :oops: :cry: :cry: :cry:

I am still having issues with my right foot today. I almost broke down at work when I tripped over nothing while walking.
Unless I am telling myself to lift my right foot it feels totally strange. I can't tell if its because i am having pain in my foot a little or because it feels numb/weird that I am having trouble with it. I can't seem to get a grip lately.

Re: On-Going Symptoms- HELP!

PostPosted: March 12th, 2014, 2:18 pm
by Yuliasir
My friend,
should you really HAVE a foot issue, you would not miss it. People never miss a foot drop, even if it is so called runner foot drop (temporary one caused by running on hard surfaces). Remember, there is a rule invented by ALS people to distinguish between ALS and BFS: FAILING NOT FEELING. We 'feel' that there is something strange, they FAIL to use their muscles.
and we all sometimes trip over nothing. It is NORMAL.

Re: On-Going Symptoms- HELP!

PostPosted: March 12th, 2014, 4:35 pm
by scaredofsymptoms
Hi Yulia,

I know I dont have full on foot drop at the moment, but I am terrified this is the start of a gradual decent into it.
My foot just feels so weird. It causes my calf and lower leg to feel weird after I walk as well (maybe from walking goofy or being hyperaware- who knows) but then I sit down and start twitching for awhile in that area until things calm down.
I don't notice my symptoms while sleeping or at rest much. I feel better without shoes on then with. I can raise and lower my foot and self test all the time, but i start to feel weaker throughout the day while doing tasks like walking, or self testing.
The whole thing is just bizarre.
Do you think having iron malabsorption and my vitamin d on the super low end of normal could be contributing at all?

Re: On-Going Symptoms- HELP!

PostPosted: March 12th, 2014, 11:34 pm
by Yuliasir
many of the fellows here have ultra low vitamin D, and some reported iron malapsorption which by the way may be a result of complement system failure as far as I remember from the bits of knowledge gathered for 2.5 years of my own BFS story. Spring fatigue is rather common thing too.

Re: On-Going Symptoms- HELP!

PostPosted: March 13th, 2014, 12:40 pm
by scaredofsymptoms
Yuliasir wrote:yes.
many of the fellows here have ultra low vitamin D, and some reported iron malapsorption which by the way may be a result of complement system failure as far as I remember from the bits of knowledge gathered for 2.5 years of my own BFS story. Spring fatigue is rather common thing too.

What do you mean by complement system failure?

Re: On-Going Symptoms- HELP!

PostPosted: March 14th, 2014, 12:27 am
by Yuliasir
I mean that we have primary immune response system called complement system. it consists, if I do not mess anything, of 3 groups of small weight proteins. Complement system is non-adoptive and used for destruction of antigens by means of phagocytosis (enhances this process), chemotaxis (attracting of macrophags and neutrophils, specific immune system cells aimed to 'eat' invades, rupturing membranes of invader cells and clumping of antigen bearing cells.
it was found that inherited lack ot excess of some of complement factors may lead to malabsorption of B vitamines, causes hidden gastritis, iron malabsorption and may cause native cells membrane damgae instead of lysis of invader's cells. If this action is targeted somehow to muscle cells membranes, it may cause twitches.
Can not rememebr exactly if D vitamine deficiency is also related, however, must to admit. But anyway MANY of fellows here complain for extra low D level, you may search for Vitamin D and check that.
There are also theories that it is strongly involved in many autoimmune disorders.

Re: On-Going Symptoms- HELP!

PostPosted: March 16th, 2014, 8:07 am
by RobJ
I have low vitamin D, but drink 2 gals of milk per week, take supplements and enjoy my pool in the spring/summer.

BFS is like any other disease, there are differences between all of us.

No doubt it's an auto-immune disease, it rears it ugly head like other auto-immune diseases.

One day they'll have a test to identify it.....

The symptoms you read about diseases in wikipedia medline are just the normal symptoms.....

Re: On-Going Symptoms- HELP!

PostPosted: March 17th, 2014, 10:28 am
by scaredofsymptoms
Just checking back in since my symptoms are still not improving.
My hands and the pain i feel on and off in my palms has been stable and not really flaring up, but my right leg has really gone to hell.
Its mostly my foot- the inside of the right foot/arch hurts and feels weak/off balance. I'm not numb but it just feels like a loss of sensation.
My calf is now tight and sore, like an almost cramp, but not actually cramping and the twitching is on and off throughout both legs and feet.

I am still self testing and can stand on my toes and heels, but my right leg/ankle/calf just feel so weak.
I know perceived versus actual, but *beep* this sucks.

I am trying to convince myself not to go for a second opinion. I found a neurologist 3 minutes from my work who is chief director at our hospital and specializes in mnd and emg readings. You would think I could trust my regular neurologist who has 20 years of experience but its just a general neuro.....

I just want to walk without having to think about this crap anymore.