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patience is something that I will have to learn, second finger right hand will no longer straighten, have bat wing triceps according to gp I saw today. Now have nc test appointment on Monday at Leeds. tempus fugit
 
I cant believe how rapidly my legs are deteriorating. Within three weeks both legs have gone from normal to muscles spasms, cramps, considerable pain, weakness, trembling and twitching. Both arms and both legs are now affected, all within about 12 weeks.
 
hi lordjohn.
though i did have balance and coordination issues before hand,when i did start with the spasms they developed gradually for some weeks till they became debilitating.............sadly its been that way for 12yrs.
your appointment with neuro is soon?
hang in there,i understand.
 
LordJohn,

You've mentioned being on a strict diet, probably to manage your diabetes. Have you made the doctor who recommended that diet aware of all the problems you are having? Also, are you taking any other medications, like cholesterol or blood pressure-lowering medications?
 
Neuro appointment not until July 30th. Did you have extensive pins and needles with the spasms Olly? Also having some fasiculations, more felt than observed, although to be exact too dammed scared to look for long! Enjoying fine weather in the garden. Picking and eating vegetables- cabbage, onions, chard, kale. Birds and squirrels coming to the feeders cheer me up .. as does watching "Last of the Summer Wine" on the tele.
 
no lordjohn,no pins and needles.
trfogey made a good point,maybe some of your symptoms are contributed to other health issues you have and/or medication.
even with a neurological illness you do get other stuff going on............can't blame everything on it.

i used to have a large garden,very avid gardener...........alan tichmarsh is my idol and would run away with him if i could lol.
grew all my own bedding plants (upto 800 every spring) plus other plants.
had a panthas grass i grew from tiny into a 8ft by 5ft monster.
also had a passion flower i grew,got it as a dying little thing for a pound,ended up covering all the back wall of the house and even got fruit every year on it.

sadly i had to leave it all, we have a small communial garden where i am now.
still grow toms,cucumber,lettuce ect in pots though...........can't beat fresh veg.
think i got some pic's in my profile album from last year.
my dad and his dad have always grown there own veg,its in the family.

take care:smile:
 
Really strange. My wife visited her GP this morning with identical symptoms to those I started with! Neuropathic pain (burning sensation and pins and needles on back of both hands) heaviness and numbness. Weird.
Still waiting for NC results... yes do have to be patient.
 
Re: Muscle loss, pins & needles, spasms, both legs at same time

Third thread, symptom
On Monday GP/Doctor said look at yourself for any muscle loss (see second thread). Noticed significant muscle loss from last year, calves, buttock muscles and others in both legs. Loosing weight recently 20lbs in 6 weeks but on strict diet. For last three weeks have also had pins and needles mainly front of legs above ankles. Now experiencing spasms and crawly feeling muscles front of legs. Clumsy on feet, loss of balance, some shuffling. Did mention to Dr, reply was neuro consultation end of July. However Babinski reflex OK and no footdrop. Weird, fast, both legs, not ALS/MND ?



Pins and needles are not ALS symptoms--they are sensory symptoms--seen most frequently in diabetic neuropathy, peripheral neuropathy and a few zillion other possible things -- including problems in your spine.

I have many of these same symptoms from my diabetes. Have had for YEARS. I can't count the number of times I've fallen over the last several months--I use a walker for support on doctor's orders.

My legs spasm and cramp constantly. I take baclofen to help with the spasticity.

Please remember that IT CAN ONLY Be ALS WHEN IT CAN'T BE ANYTHING ELSE. You have lots of "possible other things" to consider before you need to even put ALS on the table.

Good luck to you.
 
thanks notme for the reminder, and for diabetes comments, did not really appreciate potential severity of diabetic neuropathy. I do understand that symptoms are not typical of ALS, it is the waiting game that I am not used to. Visited doctor today who said NC results not expected until next week, will have beem 3 weeks since test.
best wishes
 
NC results rule out carpal tunnel as origin of symptoms. Arms cramping and twitching now, as are both legs. Leg symptoms began on 14 June, same day with both legs. Throat symptoms progressing, speech is now involved, hoarse and watery sounding speech. Tongue still ok though. Neuro still scheduled for end of the month. Not looking terribly good at present.
 
hhmm lordjohn,the negative nc results does muddy the waters so to speak.
dont know if diabetic neuropathy could still be a possibility with negative nc,was the nc test just on the effected hand or other areas?
maybe wright or trfogey could answer that question.
on a little positive note the progression of your symptoms to many areas is not consistant with als onset..............its more likely to be another neurological disease,not much comfort i know.
will send you a pm shortly.
 
Carpal tunnel syndrome was never going to explain the symptoms in anyplace but your hands, so you really didn't lose as much ground here as you think, LordJohn. However, I do note that you have never directly answered the question I asked you about the medications you're taking to control your diabetes.

Many cases of adult-onset diabetes are caused by something called metabolic syndrome. One of the defining characteristics of metabolic syndrome is a condition known as insulin resistance, where your body slowly loses the ability to efficiently transport glucose into your cells, which is what insulin produced naturally in your body is supposed to do. The fact that your diabetes has responded so well to the prescribed metformin, which is a drug that reduces insulin resistance, indicates that you probably do have insulin resistance, rather than an actual lack of insulin being produced.

However, there is also another condition that goes along with metabolic syndrome that has to do with how your body produces and metabolizes lipids, or fats in the body. One of the hallmarks of metabolic syndrome is cholesterol problems -- very low HDL (good) cholesterol, very high LDL (bad) cholesterol, and extremely high triglycerides. Currently, the standard of care for that is strict diet supplemented with cholesterol-lowering medications such as statin drugs (Lipitor, Zocor, Mevacor, etc.).

Most doctors are aware of the muscle problems that go along with statin drugs in some people. Many fewer doctors appear to be aware of the nervous systems side effects of statin drugs, however. Many of the types of cells that make up the nervous system are heavily dependent on cholesterol to produce things like cell walls and the myelin sheath that surrounds and insulates your nerve fibers. If those cells are unable to get the cholesterol they need to maintain healthy cell walls and healthy myelin sheaths, then you'll see symptoms of neuropathy as the cells cease to function properly.

Just as some individuals are more susceptible to the muscle problems that statin drugs can cause, others are more susceptible to the nerve cell side effects of statin drugs. Patients who are just starting out on statin drugs are warned about the muscle side effects because they can lead to a potentially fatal condition that caused the FDA to pull one drug completely off the market. However, from my own personal experience and those of members of my family, the doctors are not so quick to warn you about the possibility of nervous system side effects and will actually argue with you if you bring it up and try to blame things like diabetic neuropathy for those symptoms.

I was on statin drugs for more than five years. Shortly after I was diagnosed with ALS, I saw a newspaper article that suggested a possible connection between ALS and using statin drugs. When I researched it for myself, the explanations made sense, so I stopped taking the statins. Neither my primary care physician or my neuro endorsed that decision, but I'm glad I did it. And when I did, I discovered that I had been having all kinds of minor side effects from the statins that went away after I stopped taking them.

Sorry to have hijacked your thread to lecture on one of my pet peeves, but it goes to show that nobody but a trained doctor with all the tests and examinations of the patients in front of him can give accurate advice. If you only tell part of the tale, you're only going to get part of an answer and it might be a wrong part. I asked the question about medications two weeks ago and olly reiterated the importance of taking a look at your medications. Frankly, I feel like you are dribbling out just enough information for us to be forced down the path you want us to go and I've come to resent that treatment from you. If you really want our help and support, then cooperate a little. Otherwise, go sit in the corner and feel sorry for yourself.
 
i agree mr t,read alot of articles about the neurological effects of statins.
even warned my mum who was on them,turned out she had been having odd tingling and other stuff going on.
 
Thanks for replies. Blood glucose levels are very well controlled using Metformin, GP says no evidence of diabetic neuropathy. I stopped taking Simvastatin over 5 weeks ago and GP said statins not likely to be source of symptoms. Leg symptoms began on 14 June with extensive tingling in both legs, now unstable and using walking stick, extensive calf cramping and some small scale twitching, also forearm cramps but no significant twitching. Weight loss (4 - 5 pounds per week) greater than can be explained by diet. Paradoxically muscle size of upper thighs has increased slightly, calf muscles unchanged. Latest blood test was for presence of acetylcholine receptor antibodies. Still having extensive tingling in the legs, shin, calf and quads, so perhaps nerve regeneration still taking place. Voice becoming hoarse and nasal, swallowing audible, slurpy sound even for "dry" swallows, food residue with rice, biscuits, etc.

Two weeks to N - Day

best wishes to all
 
Here we go again, Lord John -- telling us part of the story but not all, yet again. How long were you taking simvastatin (Zocor) and how high was the dosage? If the simvastatin wasn't causing any problems, why did you stop taking it? Was that stoppage done upon your doctor's advice and what are you doing (or taking) to replace what the simvastatin was supposed to do for you? Are you aware that the American FDA just issued an advisory about muscle damage (myopathy) being caused by high dose simvastatin, and that advisory just came out this past spring? The muscle problems can start in days in susceptible people and the after effects can last for weeks and months after completely discontinuing the medication.

Next, the blood test you mentioned in your previous post is a test done to check for myasthenia gravis? Did your doctors tell you that and, if so, why didn't you tell us that? When the doctors did your nerve conduction study -- the one that ruled out carpal tunnel syndrome, -- did they also do a repetitive nerve stimulation study (another common test done for MG) and, if so, what were the results? Do you have other symptoms that point to MG, LordJohn? Problems with double vision? Drooping eyelids? Have you had a swallow study done to check out the swallowing problem you're having?

And, if your doctors had you in for a NCV and possibly a RNS, it would simply have been a matter of switching machines (or software here in the States) to do a regular EMG while you were there. Did they do a regular EMG on you, LordJohn? If they did, what were the results? Is that why your GP is so confident that you don't have diabetic neuropathy -- because the EMG didn't show it?

Once again, more questions spawned than answered by your latest updates, LordJohn. At least it's the weekend so you'll have plenty of time to research the next set of red herrings to drag across our trail.
 
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