Hello, new here and wondering about my symptoms

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Hello, new here and wondering about my symptoms

Postby mewow » Mon Jul 23, 2012 3:38 am

Hello Everyone,

I have been having symptoms on and off for a few years: twitching in my right hand- thumb and forefinger, now in my left hand also. Blurred vision, muscle & nerve pains, slurred speech, tingling and feeling like electric currents are going through me especially in the pelvis area, urgency urinating, pain and burning urinating, chronic yeast infections, not getting urine out when it's in there- this was seen on a urine flow test done, when i was catheterized, a lot more urine came out and the tester said he had never seen that- I felt nothing and felt I had emptied my bladder completely just before the catheter part of the test, palpitations, dizziness, muscle fatigue- I was once paralyzed with spasms in my calfs on a hot day, but it seemed it was due to low potassium, as I ate a banana and soda and I was eventually able to move. In addition to blurry vision, astigmatism I was also diagnosed with ocular rosacea and dry eye at the time I started going in and out of early menopause. I eventually went on hrt and this seemed to help a lot of my symptoms. I originally thought a lot this was due to chronic pain/injuries/fybromyalgia and due to early menopause, but recently I became very ill and it turned out I am type 1 diabetic and I was in dka at the time of diagnosis.

When I entered the hospital, I could see, without reading glasses or any glasses- i had been using reading glasses for two years or so prior to the events leading to dka, which all started with a very severe vaginal yeast infection which wouldn't resolve. Then all of a sudden I seemed not to need any glasses although a week before I couldn't see distance signs.

As I said, when i entered the hospital, I could focus, I was however seeing bursts of flashing lights as well as little balls of light floating around the edges of my vision. When I was given insulin therapy my sugars went crazy and were all over the place and eventually started to normalize- my ability to focus close and far was gone and my vision was totally blurry. It has improved but it is not back to normal yet I need glasses for close and far focus although in bright daylight I can see distance well now mostly. There appears to be no damaged to my retina or eyes, so I assume this is from sugar/fluid still in my lenses. I have read that insulin therapy can cause blurry vision so I'm wondering if that may be the case. I will be seeing a retinal specialist soon.

I'm just wondering now what to do and if you think this could be ms? Obviously, I hope not but I have to wonder now with everything else that has happened to me recently.

About 3 years ago I went to a neurologist who ruled out als and something else and said he thought my twitching was focal distonia, he ordered a neck mri to see if nerves compression could be causing this due to my past injuries, but I didn't do it. An mri of my brain showed a white spot which he said was due to chronic migraines. I think at that time my headaches were starting to come back again- they were mostly in remission for a long period before that. I was going through too many things in my life at that time and I didn't follow up with more tests. I was then re-injured in a car accident where my whole spine was strained again-this time I was a pedestrian and someone struck my shopping cart which hit me. This past spring/summer I had bursitis in my shoulder and had more pt for that as well as a steroid shot which allowed me to lift my arm again, the pain was terrible for a few weeks and increased exercise especially this past spring has helped. I'm not allowed to do more than walk currently due to dvt in my leg, I have symptoms in both legs but nothing has shown up on testing in one. I also have symptoms in my arms of a lot more tingling/pressure and blood flowing around, it is such an odd feeling. these all seem to get worse with exercise and my inr nurse and vascular doc say no exercise. coincidentally or not, I did some exercise for my arms only soon after my second hospital release and had pain in my left arm and swelling, it turned out to be another blood clot, but fortunately a superficial one. i feel like a freak lately.

When I was diagnosed type 1 diabetic I was low in vitamin D- I have been supplementing for a few years, but I'm on warfarin now and I can't take everything. I'm currently on insulin, potassium, fish oil, calcium, vitamin d, biotin, b12, lutein, chondroitin, hyaluronic acid, probiotic and a low carb diet high in fat and veggies/protein. I had numerous blood testing done when hospitalized but I'm not sure what it all was. the most recent test seemed to be normal except that my cholesterol levels were high, not really high though and my ratio hdl to ldl was very good at 3 I think- my endo wanted me to take statins but my other doc said not to do this as it causes muscle/nerve damage and he recommended slow niacin instead.

In spite of all of this happening to me, I still look well most of the time and people keep telling me how great I look, although I have to say I feel like a wreck inside a lot of the time and I'm still having a lot of fatigue which was one of my major symptoms in the past and especially before the diabetes diagnosis.

What do you think?
mewow
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Re: Hello, new here and wondering about my symptoms

Postby jimmylegs » Mon Jul 23, 2012 1:29 pm

well i didn't learn my lesson last time, and lost the long post. short story:

1) consider getting a good quality multivit/min for a foundational supplement. one that needs to be taken in divided doses to maximize absorption is best.
2) consider high potency b50-complex rather than just b12.
3) look into magnesium and zinc. if you click through to my 'signature' links you can read more detail about forms/doses
4) consider vitamin E8 complex. a blood thinner (vit K antagonist) that's better for you than warfarin :) important: not any old vit E. again, details in the 'signature' links (the regimen one would probably be best place to start).

in the original post i had sifted out all your symptoms from the rest of the text and i put one or two suspect nutrients beside each. zinc, magnesium or both were almost universally indicated, with a hint of riboflavin on one item (bursitis), vit E on one (the clot) and a hint of omega 3 on a couple others.

i'm interested in the forms and doses of the rest of your regimen, if you happen to know what they are..?
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Re: Hello, new here and wondering about my symptoms

Postby KellyLustham » Tue Jul 24, 2012 3:23 am

I think, :mrgreen: You are still strong and will go on with you life fine, just think positively and never give up until your last breath. Just go and enjoy life for now but remeber to be careful with what you eat from now on.
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Re: Hello, new here and wondering about my symptoms

Postby mewow » Mon Jul 30, 2012 1:23 am

Thank you Jimmylegs,

I have been taking vitamin e 500iu, fish oils 1000 mg, vitamin b 12 extended release and patches, the good one, a multi vitamin b supplement but I had to stop that as it interfered with warfarin for some reason, calcium citrate plus vitamin d, I've now added 1000 mg vitamin d to bring that up to 2000, lutein, hyaluronic acid, glucosamin/chondroiton, potassium and biotin. I honestly can't tell you all the details as I recently threw out the bottles and bought a special vitamin tray since I take so many. I was taking a melatonin/ theanine supplement for sleep but stopped this due to warfarin.

I have a dvt in my leg so I will be on warfarin for 6 months, but when I stop that I will look into that other vitamin e supplement you mentioned. I did notice on vitamin E at 1000mg I was taking a long time to stop bleeding with a finger cut so I cut that down. I wanted to supplement magnesium but that is bad with warfarin also, zinc is out also- I was taking that for a while but it upset my stomach so I stopped. After two trips to the er for other blood clot symptoms, which turned out to be thrombosis in my arm and then symptoms in my right leg I'm taking this very seriously, I don't want to have more clots- I have had many sleepless nights due to both the clot problems and low blood sugar. I had to do lovenox shots for a while when my inr went down. I was very low in potassium during dka and they had to give me potassium infusions. I think it is more near a normal range now but still low. I'm not sure about my other ranges at the moment, do they test for all these levels? Where would I get those tests done?

I'm not actually sure what my vitamin d was now, just that he said it was low- but I think he was looking at someone else's records when he said that now and it wasn't on my normal blood panel, so it must have been on a bone scan I had done. My doc also said I had mild osteoporosis but I wonder now if that was also someone else's record he was looking at. I will ask for a copy of all this this week.


I will check out the b50 too. It is hard to find vitamins that don't have sugar and other additives I can't take. many of the B vitamins have c added in which upsets my stomach too.

I had more twitching last night and partial numbness in my face and throat after some gardening- this happens with the neck / nerve compression usually and is frightening but it usually resolves in 1/2 to an hour or so. This one also happened after taking slow niacin, so now I'm switching to no flush niacin. all my vitamins are in solid or gel pill form except for the b patch, one is b12 and one is a multi b complex, I also take an extended release b12 everyday.
Last edited by mewow on Mon Jul 30, 2012 2:01 am, edited 3 times in total.
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Re: Hello, new here and wondering about my symptoms

Postby mewow » Mon Jul 30, 2012 1:27 am

I forgot to ask, do you know of a liquid multivitamin that doesn't have vitamin K and that doesn't have any carb or sugar content?
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Re: Hello, new here and wondering about my symptoms

Postby mewow » Mon Jul 30, 2012 1:41 am

KellyLustham wrote:I think, :mrgreen: You are still strong and will go on with you life fine, just think positively and never give up until your last breath. Just go and enjoy life for now but remeber to be careful with what you eat from now on.


thanks kelly, if I didn't have to deal with type 1 diabetes as well as dvt I would probably be enjoying my life a lot more, that does take a toll on enjoying things... but I hope to adjust to it more in the future and hope that I won't have any major complications and that my vision goes back to normal at some point. I am very careful about what I eat, but I always ate a healthy diet before this too, so that didn't help much unfortunately. I wish I had been supplementing more vitamin d when this happened. I did find out from blood records in oct that my bg was only a little high, 106 an would have been considered a normal non fasting range, but it was still high for me I think. I did not fast for the test, but I have usually been in the 80's in the past I think for fasting.
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Re: Hello, new here and wondering about my symptoms

Postby mewow » Mon Jul 30, 2012 2:40 am

Here is some of my blood work at the time of my diagnosis:

may 11th:

potassium 3.5 low
sodium 137
chloride 97
carbon dioxide 21.1 low
glucose 315 high finger stick was 279
bun 9
creatinine .6
b/c 15
hemoglobin A1C 13 high


calcium 9.4
protein 7.8
Albumin 4.9
a/g 1.7
alk phos 59
alt 20
ast 22
total bilirubin .5

cbc

wbc 4.3
rbc 5.17
hgb 15.4
hct 44.7
mcv 86.5
mch 29.8
mchc 34.5
plt 227
mpv10.2
gra% 74.7
mid% 7.3
mid# .3
lym% 18
rdw 12.8

urinalysis

color yellow
clarity clear
sg 1.015
ph 5
leukocytes neg
nitrites neg
protein 100++
Glucose 1000+
ketones 160
urobilinogen .2
bilirubin neg
blood neg


I will post the more recent ones later- I'm not sure if any of this will be helpful for ms since the vitamin levels and minerals seem to be very important for that.
Last edited by mewow on Mon Jul 30, 2012 4:57 am, edited 1 time in total.
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Re: Hello, new here and wondering about my symptoms

Postby jimmylegs » Mon Jul 30, 2012 4:29 am

good to see, will be back on later to go through a few items.
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Re: Hello, new here and wondering about my symptoms

Postby jimmylegs » Tue Jul 31, 2012 4:34 pm

vitamin e 500iu,
fish oils 1000 mg,
vitamin b 12 extended release and patches, the good one,
a multi vitamin b supplement but I had to stop that as it interfered with warfarin for some reason,
calcium citrate plus vitamin d,
1000 mg vitamin d to bring that up to 2000,
lutein,
hyaluronic acid,
glucosamin/chondroiton,
potassium
biotin.

potassium 3.5 low
carbon dioxide 21.1 low
glucose 315 high finger stick was 279
hemoglobin A1C 13 high


okay. so for starters, yes do look up E8 complex and magnesium (glycinate) if you can, once you're off the warfarin. when you felt sick from the zinc, can you tell me what form, dosage and timing you were using? as for the low potassium - what form/dose are you supplementing with? have you had any follow-up testing?
the high glucose and high A1C seems to indicate poor sugar handling.. makes me curious about your zinc status. have to do more reading to see if low CO2 is just correlated with the low K.

as for other tests, i doubt they'll run them without being asked, but as long as they'll write you the requisition, any lab should be up for the job.
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Re: Hello, new here and wondering about my symptoms

Postby mewow » Tue Jul 31, 2012 8:01 pm

Hi Jimmylegs,

When these tests were done I was in the early stages of diabetic keto acidosis so that accounts for the sugar/co2 levels and the terrible a1c, because prior to that I had had at least 2-3 months of very high sugar levels without knowing it no doubt- that has improved a lot now that i'm on insulin and a low carb diet. by the time I was hospitalized my co2 was 5 and my blood ph was acidic from dka, I don't know what the ph was on the friday before that monday when these first tests were done. I know my doc did a c peptide test that day too which would show how much of my own insulin production I had then, but I don't know the results of that yet. my most recent c peptide after insulin treatment was about .25 so it is very low, indicative of type 1, as was the dka and some antibody tests(positive for gad 95 I think), but since it isn't 0 it also suggests I'm in the honeymoon and I still have some of my own production left as do some of my other reactions to insulin and eating etc.

When I was in the er and then the icu the first time in May, my potassium dropped to 2, that was one of the complications I had in dka- it took nearly 3 days for me to come out of it. I was given potassium infusions as well as potassium chloride pills, but the level didn't really come up till after dka, although that probably stopped it from dropping even lower and causing heart problems. now I'm supplementing potassium gluconate 595 mg 1x per day as per instructions from my last nurse on my second hospital stay. I think my last potassium level was about 3.4, so it's much better but still on the low end. the low potassium happens in dka because all the potassium goes into your cells due to the acidosis and then starts to come out when you come out of dka. my endo was not as concerned as the other docs were but this because he thought it would all come back out after dka, but they were very worried about arrhythmia and it is one of the dangers with that.

I was taking 50 mg zinc gluconate 1 x per day and I believe I also just felt over sick/nausea from that- I was taking it for cold prevention but then I read that too much zinc can be dangerous so I stopped it and added some of the other vitamins as well as a homeopathic cold treatment when needed I think. I stopped that over 3 years ago.

I'm going to look into the e8 and magnesium glycinate when I finish the warfarin, thanks :)

I think my endo will run those tests if I ask him to. can you suggest which ones should I have done? I was looking at someone else's question with all her various vitamin levels. I don't think I've had a zinc level done but I'm not sure, when I was in dka they tested tons of things every hour and I can probably get the records to see what they tested for. they were mostly concerned with my blood ph, blood ketones and co2 and things related to dka like potassium and phosphorus I think.
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Re: Hello, new here and wondering about my symptoms

Postby jimmylegs » Wed Aug 01, 2012 4:29 am

hello,

when i first started on zinc i was pronouncedly deficient, and it made me feel sick too - except my doc had me on 100mg per day, and i had to split to two doses of 50 each. maybe you could try 25 and 25.

too much zinc can affect copper levels. that's why my own particular 50mg supplement contains 2mg copper, for proper balancing. zinc can be toxic at very high intakes but those are generally associated with your industrial exposures rather than via supplements and food.

at the end of the day, it's the serum levels that count. ms patients are known to be lower on average in zinc, compared to healthy controls. zinc status also is positively correlated with d3 absorption, and serum uric acid (also low in ms). my own bloodwork corroborates the published science.

if i could order only two tests, they would be zinc and magnesium.

if you can get more, vit d3 is a good idea. beyond the ms nutrition testing, i'd say the tests are up to you and your docs and anyone else who has input :)

found this yesterday while studying human susceptibility to c difficile, gives another target zinc level for health, which cuts off the bottom half of the 'normal' range:

Serum Zinc Level and Coronary Heart Disease Events in Patients With Type 2 Diabetes
Patients with serum zinc concentration ≤14.1 μmol/l at baseline had a higher risk for death from CHD than patients with serum zinc level >14.1 μmol/l (20.8 and 12.8%, respectively; P = 0.001)
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