Whats wrong with me

Hi guys

this is a long shot but Wonder if anyone has had this or similar

In 4 december 09 i had a hypo, a pretty bad one that resulted in my being hospitalised for 3 days while I had a CT scan to check for any damage…
during this hypo I was convulsing abit, and had lots of pain in chest stomach butt etc
(had diabetes just over 20 years so its a rare and shocking occasion)

On being released from hospital most of my symptoms(pain) disappeared but i still have the following ongoing issues since December

Extreme leg weakness, Un balanced,Symptoms of poly Neropathy and recent symptoms of intermittent claudication (muscle cramp after short period of walking)

for one whos been active and healthy doing martial arts for the last 17 years these symptoms of being unbalanced and weak in the legs is rather disconcerting
I cant train anymore let alone run
can only walk short distances before the pain sets in

Have had a battery of blood tests, MRI scans etc etc
diets good and taking a whole pharmacopoeia of supplements becoming the worlds most expensive urine

latest a1c is 8.4

Seen my endocrin whos clueless and yesterday finally after waiting months saw a neurologist

who told me yesterday I cant find anything wrong with you?

according to him the sensativity in my feet is not so bad even though i have tingling numbnes and burning(sometimes) (Neuropathy I thot)

not the first time ive heard that, and feel let down by the western medical community so ask the Diabetec community if i may

so if its not the neuropathy or some form of PAD then what can it be?

anyone had something similar to this?

driving me mad!!!

cheers

Hi John, No i haven’t im afraid

BP slightly elevated at 130/85 (but is usually like that, apparently a gift from my scottish blood line)

intermittent claudication is a Micro vascular condition but wasn’t sure it could be related to cardio vascular

My GP is tired of hearing from me

seemed rather annoyed at me when i asked for a referral to check for PVD/PAD

keeps telling me well “we cant find anything wrong with you”, “what you want from me?”

week legs, unbalanced and symptoms of neuropathy in my legs groin and back
hmm somethings very wrong :frowning:

These kinds of symptoms can sometimes start abating when blood sugar is kept from fluctuating. Like 90-110. You’re going to do some serious lower carbing to keep after meal highs from going up. Best wishes! How about a CGM like Dexcom so you can watch what happens with every gram of carbs? And you can set that alarm so you can pre-treat an oncoming-hypo in time. So when a doc asks, What do you want from me? The answer is a Dexcom for, first of all, a month!

I have had a similiar concern.I found out I was type 1 when I ended up in ICU with blood sugar of 721. Felt pretty good until about 3 weeks after being released. It was like a switch was turned on and started getting the burning ect. and extreme bad pain in the shins and feet. I also have weakness in my legs and loss of balance. I am an automotive shop foreman on my feet 8 hrs or more a day and now 3hrs is way to much, sometimes less. ( unable to return to work yet ). I took me almost 3 months and as many doctors and lots of pushing to finally admit that I had Diabetic Neuropthy. My GP apologized because she said they had not seen a case like mine that started so quick and hard, I understand the frustration. I hope this helps.

Ok, this might be far-fetched, but have you gone to a chiropractor?

A few years ago, I had a bad low and after getting them back to normal, I fell asleep. When I woke, my legs felt ‘asleep’ still. For about 12 hours, they would not wake-up, so I decided to go to the hospital. I could walk, not well, but some of the symptoms match yours - weakness, neuropathy, unbalance etc… At the hospital they did a battery of tests and concluded with diabetic neuropathy. To me, it made no sense. How could they be fine one moment and than completely not the next? Of course I didn’t believe it and I searched out other doctors for their opinion. I saw my Endo, my family doctor and my cardiologist. All gave the same diagnosis. I just didn’t believe that after 17 years of being a diabetic (at that time), how neuropathy could just happen so insanely fast.

About a week later, after no improvement, I decided to see my chiropractor/ART specialist. Immediately he knew what the problem was and fixed it within a minute. No lie. Turned out to be that my superficial cutaneous nerve was pinched - badly. That is the nerve between your hips and stomach, that runs down to your legs.

Anyhoo…I would say, look into it. I hope this is your problem, since it is an easy fix. I can relate to how you feel, since I was in the same boat (only for a few days though).

If I were you I would start with something that is under my control, that is my blood sugar. Get your A1c below 7% and see how your symptoms respond. I would start a daily log that monitors BG, food, exercise and insulin. If you can get a CGM, I would definitely do that.

This is probably a complex problem and may not have a single solution. Start with a return to the basics. Good luck.

Terry

Check your B-12 levels. I had similar symptoms in 2002, It took two months to diagnose., while I got progressiveky worse. Pernicious Anemia ( B-132 deficiency) caused a sudden onset of symptoms in me, and it took me about 2 1/2 months to recover. I did not have leg cramps, but I did have peripheral neuropathies with pain and tingling,( still have tingling) Treat ments? IV of b-12 in a slow drip while hopitalized, recovery in a long-term care facility where I had to learn to walk and take care of myself again for three weeks. But Praise God, I was wheeled in , in tears, in a guerney, and WALKED out grinning, I took b-12 shots monthlky for 3 years, but my levels got too high. Soiiinow take sub-lingual b-12 drops daily and get the shot s twice a year…
Tthough it is an auto-immune syndrome that can run consomittant with type one, many physicians ,endos and neurologists have heard of b-12 deficiency, but do not realizae how absolutely awful the ,symptoms are,… It is a “House” ( the TV show) syndrome:Hard to get anyone to think to look for unless you are elderly, alcoholic or live in an underdeveloped country with rampant mal-nutrition,
Please get a specialist to check you out. I was told II had a “conversion disorder”. i.e. all in MY HEAD because i was unable to walk without falling and they had run all the tests on me ( MRI, CAT SCAN, etc) I was just told to get in “better control” and things would get better. I am not telling you not NOt strive for better control, IYou can do that. But I know how hard it is to suddenkly become unable to walk and to move . The medical community beleeved out of control diabetes and "crazies "for me, were the singular causation fators. Well I had an a1c of 7.1 ,and still could not walk… The B-12 test was the teller.

Please let us know how you are doing

God Bless,
Brunretta

Hi Guys

thank you for the wide and varied Responses
Its exactly what I was looking for

@Terry, No one where would disagree that getting your A1c below 7 is a good thing

But it reminds me of the attitude of most of the doctors who i have seen

oh a1c above 7 then it must be Neuropathy(we shall look no further in that case),
Now Im certainly not gonna second guess any doctors but no ones diagnosed it as that yet, officially
not even my endocrin
why because as he said, ive got pain in feet and tingling in my legs feet groin and back(comes and goes)
but i can still feel my feet, hard soft hot cold etc etc?

I am aware Neuropathy damage occurs over years then just presents but my symptoms are all to sudden all to sever, all to conviniently close to my hypoglycemia convulsion

what concerns me is not the tingling but the loss of motor function, uncordination /balance as if my legs not listening to me sometimes
thats late stage Neuropathy not beginning stage?
so with the intermittent claudication I thot perhaps PAD or PVD, or both but apparently i have healthy pulses in both feet/legs so they wont test me for that?

something is not right the doctors all agree with me on that

@Brunetta
thanks for the heads up
I looked into that and I take a B complex as well as the fat soluble B12 Methylcobalamine
also a litany of supplements listed here
https://forum.tudiabetes.org/topics/reversing-diabetes-neuropathy

all for aiding Neuropathy and improving blood circulation

@Desdemona
that doesn’t sound far-fetched at all

as i said most of my pains/strains went away a week or two after the incident
one thing that still presents from that incident is I have a pain in my spine between my shoulder blades
not sore/but a discomfort ,sometimes when I stretch or put it in a awkward position it pinches a nerve and sends a shock to the system
Ive mentioned this to the doctors but they just discounted it
Ive done martial arts for 17 years so im not stranger to a bump or bruise or two
Guess I only started paying attention when Lost about 60% of ability/performance of my legs/ Co ordination
will ad that to my list of doctors to go see , thanks

I currently have no improvement or worsening of my symptoms, With me taking supplements like ALA I can honestly say the rest pain/ burning at night has been reduced from a pain scale of about 6/10 to now one of around 2/10 and ive only been taking them about a month now,but im taking lots of things so is it the ALA on the Neuropathy or something treating something else
GRRR

Will keep you posted

thanks again for the feeback, hopefully it helps myself and all the others

I hope you find andanswer. I too, had tried Alpha lipic Acid, and it helped with the pain and tingling somehwhat, but nor with the balance and uncoordination. The therapy multiple b-12IV’s helped, then I had to to learn how to walk and motor plan, as proprioceptive feedback to my lower extremities was really messed up. And I had a tight feeling, like a belt around my waist and through the groin area. I felt like i was being shocked by electrical sensations up and down my legs and feet , and my toes twitched and moved involuntarily, kind of like restless legs. The big tos still twitch at night, but no more electrical spasms and parasthesias…Do you have any of those type of symptoms?

Yeah Brunetta I have most of them exactly like you said in regards to a belt around my waist
not sore, not tingling just a belt, an extra piece of skin.slight numbness

the ALA does help with he pain and tingling but does not do anything for the leg weakness or balance

I have restless leg about once or twice a week, Not that often

what freaks me out is I exercise every day and although i wont be running any time soon i have days when my symptoms are pretty much abated, things seem fine, but usually only for a few hours then its back to uncordinated and weak again

can I ask how did they Diagnose Pernicious Anemia?
how long did it take to treat it?

Ive had a bunch of tests done and im sure that would of come up?

Ive just read up the B12 Deficiency can cause intermittent claudication

It seems to fit the majority of my symptoms including the impaired memory(which i thot was just age related s didn’t include here)
then again so does Neuropathy and so does PVD

Ill look into it

thanks again

bodistava…The neurologist on call at the hospital I had gone to during one of my three emergency room visits after multiple falls, and subsequent hospitalization finally asked for the b-12 test after they had run ther gamut and all other tests wete normal… It is a blood serum test and all they did is draw up a vial and send it to the lab…That is how I am tested every 6 months in my internist’s office. It is fairly simple, but sone what expensive, over $100, I think… I am blessed and fortunate that my insurance will pay…

. as I said before, since you are active and relatively healthy, your profile does not meet that of an elderly, alchohol-addicted, mal-nourised, HIV infected person that medical personnell are told are at risk for Pernicious Anemeia in their training…so they will not know to look for it unless you ask. IT is a disease that can only be found by “Dr.House” (LOL).As for me, a lot of prayers from a lot of people asking for my restoration really helped!!

I also had memory problems, auditory and visual defensiveness (sensitivities) to light and noise, and even saw hallucinations from time to time!! This gradually cleared up when my b-12 levels were returned to normal after about a week of treatment in the hospital, then extended care facility with the b-12 IVs.

Hope this info helps…Pernicious Anemeia is more common than thought

I am continually praying for you.

God Bless,
Brunetta