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Macophile 09-21-2009 08:04 AM

Unexplained Weakness
 
This might be a little weird, but I noticed yesterday that my right upper leg felt weaker than the rest of my leg and my other leg. I also though my right arm might have felt a little weak, but thought I might have been imagineing it. Today it really does seem that the arm is weaker. (When holding both arms infront of me the right gets tired WAY before the left.) I am not sure how to test the leg- but this seems weird to me. Has anyone experienced anything like this?

I'm going to call my Neurologist now and see what he says but I am kind of freaking out, esp. as I had optic neuritis, and they told me to watch out for muscle weakness- is there anything else it could be? Does PN turn into weakness in specific areas?

Macophile 09-21-2009 10:00 AM

Update
 
OK, my dr. is on call at the hospital today (of course) so He wants me to come to the ER and see him there. He says based on my history, and that it worried me enough to cal him, he might want to keep me overnight. I am thinking I will feel really dumb it this turns out to be nothing.

echoes long ago 09-21-2009 02:23 PM

better to be safe than sorry.

dahlek 09-21-2009 05:58 PM

Do NOT EVER feel dumb!
 
You got word that your doc'd see you and where! I sure hope you went!

I was dealing with a sudden bout of 'weakness' [as in suddenly I'd lost all leg strength?] and first fell and fractured an ankle. Next month I fell well and good and fractured my leg! I've just gotten 'walking papers' today, meaning I get to go thru extensive PT to relearn how to walk and rebuild muscles that haven't been worked much for the last 4 months.

I wouldn't wish that whole experience on my worst enemy. But, all that's happening to you IS scary. Something must be going on, what it is? Is up to your docs. Or go and get second, third or more opinions until you at least know what it isn't. That's why Liza Jane put together that 'list' and start getting copies of your records and 'checking' things off.

I truly know what it's lilke to suddenly be trundling and then, BOOM! It's as if your legs have dissolved. Do be super-duper careful in the meantime? Falling can be a very messy thing. Many here will attest to that fact.

Let us all know how you are doing, please! Heaps of these:
:hug::hug::hug:'s - j

Macophile 09-22-2009 05:20 AM

Thanks everyone. :) I did go (of course!) and he said since the weakness is not major (I tried telling him that on the phone) and based on the fact my neuro exam seems clean he was comfortable sending me home, but he was going to set up an apt to have me scanned (MRI of the brain and spine) in the next couple of days by an outside party, as the hospital would take a couple weeks. and of course if it gets worse to come in immediately to be admitted.

He is of course worried about MS, but my scan of 3 weeks ago is clean, although that doesn't exactly mean anything as things change. So if the new scans are clean they will have to try to go down other pathways maybe another EMG (oh HELL no.) He also told me he would contact my Rheum. and tell them what was going on in case this would mean something to them.

hoibie@comcast.net 09-22-2009 03:19 PM

Muscle weakness is sometimes caused by statins. Are you taking any?

Macophile 09-22-2009 06:22 PM

Quote:

Originally Posted by hoibie@comcast.net (Post 569444)
Muscle weakness is sometimes caused by statins. Are you taking any?

statins? :confused:

Kitt 09-22-2009 06:29 PM

Quote:

Originally Posted by Macophile (Post 569521)
statins? :confused:

Yes, statins can cause muscle weakness even in otherwise "healthy" people.

Macophile 09-22-2009 06:53 PM

Quote:

Originally Posted by Kitt (Post 569525)
Yes, statins can cause muscle weakness even in otherwise "healthy" people.

I mean what are they? I don't think I am on any- my full drug list is on page 2- Sorry for the confusion.

echoes long ago 09-22-2009 08:27 PM

cholesterol drugs like crestor, lipitor, etc.

Macophile 09-23-2009 05:44 AM

Quote:

Originally Posted by echoes long ago (Post 569574)
cholesterol drugs like crestor, lipitor, etc.

Ah... thanks. No I am not on any of these.

Macophile 09-23-2009 05:50 AM

Drug List
 
Here is my full Drug List. However the Dr. does not think it is a drug side effect. It does weird me out though, cause I keep second guessing my body- like- does it really feel like that, or am I imagining it. I shouldn't do that, I know when something feels off, but I am so worried it will turn out to be another weird symptom that no-one knows what it is or what it means, and after a bunch of testing I will be back to square one. Or that it will turn out to be nothing (I know it sound wrong to wish it to be something, but when you are just waiting for symptoms so they can make a full Dx you want things to be something.

DRUG LIST

Migraine
1) Amitriptyline- 10mg tablet (6 at night)
2) Topamax- 100mg tablet (1 at night)
3) Magnesium- 500mg (1 at night)
4) Nerve Block (Occipital Nerve)- 9/11/09

Allergies/Asthma
1) Benadryl- 25mg caps (1-2 caps as needed.)
2) Singulair- 10mg tablet (1 at night)

Period Regulation
1) Solia- (Desogestrel 0.15mg, Ethinyl Estradiol 0.03mg) tab (1 at night)

High Blood Sugar (Important to note doc insists it is not diabetes)
1) Metformin- 500mg tablet (2 tabs- 2x a day- before breakfast & dinner, if >140 take 1, if >180 take 2.)

Irritable Bowel Syndrome/Acid Reflux
1) Florajen 3- 460mg caps (2-4 caps a day)
2) Flagyl- 250mg tablet (3 tabs a day)
3) Miralax- 1tsp daily
4) Protonix- 40mg tablet (1 tab a day, as needed)

Peripheral Neuropathy/Auto-Immune Disease
1) Gabapentin- 600mg tablet (5x a day)
2) Lyrica- 100mg caps (1 cap. 3x a day)
3) Baclofen- 10mg tablet (2 tabs. 3x a day)
4) Methotrexate- 2.5mg tablet (8 tabs per week)
5) Folic Acid- 1mg tablet (1 tab a day)
6) Vitamin D3- 1000IU tablet (1 tab daily)
7) Vitamin B12- 1000mcg tablet (1 tab daily)

daniella 09-23-2009 07:09 AM

I am sorry you are facing more. Like you with any sign of new symptoms I get very anxious. I am working on staying in the day as through this I have had some things that either caused a lot of pain or feeling pressure/sick I could go on that did not turn out to be anything. I am not sure what it was and of course it is still scary and like you I wanted more of a dx but some of the things that caused me a lot of pain did go away and not come back. I am glad you are getting an mri of the brain and spine I had that too. It sounds like your doctor is on the ball so that is good as well. May I ask and I am sorry do you have pain in your legs? I know at time more a few years ago my legs felt like that they would give due to that. On a side note I am thinking your doctor knows of all these meds but have you given him this list again as it has been updated. Sometimes I will see a new doctor and start a new med and tell them what meds I am on but I also think when the list gets that long to show the primary doctor you are working with the most the full list.
Lastly I am sure you mentioned this and I know you are going to a rheumo but have you been tested for lupus,celiec,cholitis or chrons,etc? If your blood sugar is high what is it or is it just moderatly high? Sorry I am not much help. Try to take 1 day at a time. I know how hard this is

pabb 09-23-2009 07:33 AM

Quote:

Originally Posted by Macophile (Post 569704)
Here is my full Drug List. However the Dr. does not think it is a drug side effect. It does weird me out though, cause I keep second guessing my body- like- does it really feel like that, or am I imagining it. I shouldn't do that, I know when something feels off, but I am so worried it will turn out to be another weird symptom that no-one knows what it is or what it means, and after a bunch of testing I will be back to square one. Or that it will turn out to be nothing (I know it sound wrong to wish it to be something, but when you are just waiting for symptoms so they can make a full Dx you want things to be something.

DRUG LIST

Migraine
1) Amitriptyline- 10mg tablet (6 at night)
2) Topamax- 100mg tablet (1 at night)
3) Magnesium- 500mg (1 at night)
4) Nerve Block (Occipital Nerve)- 9/11/09

Allergies/Asthma
1) Benadryl- 25mg caps (1-2 caps as needed.)
2) Singulair- 10mg tablet (1 at night)

Period Regulation
1) Solia- (Desogestrel 0.15mg, Ethinyl Estradiol 0.03mg) tab (1 at night)

High Blood Sugar (Important to note doc insists it is not diabetes)
1) Metformin- 500mg tablet (2 tabs- 2x a day- before breakfast & dinner, if >140 take 1, if >180 take 2.)

Irritable Bowel Syndrome/Acid Reflux
1) Florajen 3- 460mg caps (2-4 caps a day)
2) Flagyl- 250mg tablet (3 tabs a day)
3) Miralax- 1tsp daily
4) Protonix- 40mg tablet (1 tab a day, as needed)

Peripheral Neuropathy/Auto-Immune Disease
1) Gabapentin- 600mg tablet (5x a day)
2) Lyrica- 100mg caps (1 cap. 3x a day)
3) Baclofen- 10mg tablet (2 tabs. 3x a day)
4) Methotrexate- 2.5mg tablet (8 tabs per week)
5) Folic Acid- 1mg tablet (1 tab a day)
6) Vitamin D3- 1000IU tablet (1 tab daily)
7) Vitamin B12- 1000mcg tablet (1 tab daily)

flagyl can be nasty on the body, ...with the need of period regulation and BS issues...i would presume you have PCOS?..the D3 mrs D recommends the "oily" kind, which would be in capsules; perhaps a larger dose? Vit B12, on a totally empty stomache, and perhaps a larger dose, at least in the short term....was this new weakness shortly after your weekly methotrexate dose?
are you getting enough calcium?
good luck

mrsD 09-23-2009 07:49 AM

Methotrexate is a mitochondria poison. It used to be used as a chemo anticancer treatment. The use for inflammatory disease is somewhat different, but the drug effects remain the same.

http://www.mitochondrial.net/showabs...ondrial+damage

Since the mitochondria are the energy factories for our bodies' cells, damage to them, will damage tissue/muscle over time.
The trade-off is of reducing inflammatory response, vs killing the beneficial cells. One side effect of methotrexate is muscle weakness.

I put up a video on the vaccine thread here, yesterday. Dr. Cannell explains how Vit D prevents the body from attacking itself during viral infections. Since Vit D has been found very helpful for MS (an autoimmune disease), it is becoming more obvious every day that people with ANY autoimmune problem, who are making cytokines in excess which are attacking themselves, should have Vit D tested and take adequate doses to bring them up to normal levels.

Here is the video again:
http://www.youtube.com/watch?v=--NqqB2nhBE

While no studies show use of acetyl carnitine with methotrexate, carnitine is useful to prevent chemo cell damage in normal cells.

Macophile 09-23-2009 08:07 AM

Quote:

Originally Posted by daniella (Post 569716)
I am sorry you are facing more. Like you with any sign of new symptoms I get very anxious. I am working on staying in the day as through this I have had some things that either caused a lot of pain or feeling pressure/sick I could go on that did not turn out to be anything. I am not sure what it was and of course it is still scary and like you I wanted more of a dx but some of the things that caused me a lot of pain did go away and not come back. I am glad you are getting an mri of the brain and spine I had that too. It sounds like your doctor is on the ball so that is good as well. May I ask and I am sorry do you have pain in your legs? I know at time more a few years ago my legs felt like that they would give due to that. On a side note I am thinking your doctor knows of all these meds but have you given him this list again as it has been updated. Sometimes I will see a new doctor and start a new med and tell them what meds I am on but I also think when the list gets that long to show the primary doctor you are working with the most the full list.
Lastly I am sure you mentioned this and I know you are going to a rheumo but have you been tested for lupus,celiec,cholitis or chrons,etc? If your blood sugar is high what is it or is it just moderatly high? Sorry I am not much help. Try to take 1 day at a time. I know how hard this is

:hug: thanks so much. I do not have pain in my legs, I do have PN in my feet though. And I do make sure that I bring this list (updated every time) to the Dr's. (every one I ever go to.) I have been tested for those, but they came back neg. (I think). They are pretty sure I have some kind of Auto Imune issue, but they can't pin it down.

Macophile 09-23-2009 08:11 AM

Quote:

Originally Posted by pabb (Post 569725)
flagyl can be nasty on the body, ...with the need of period regulation and BS issues...i would presume you have PCOS?..the D3 mrs D recommends the "oily" kind, which would be in capsules; perhaps a larger dose? Vit B12, on a totally empty stomache, and perhaps a larger dose, at least in the short term....was this new weakness shortly after your weekly methotrexate dose?
are you getting enough calcium?
good luck

The Flagyl can be nasty, but i only have to be on it sort term- thank heavens.

The endochrinologist also thought I had PCOS but I didn't quite meet all the requirements. (No excess hair, no cysts)


I am going to buy the "oily" vit D this week as I am almost out of the other one. And I will see if this does anything.

I do try to take the vit B12 on an empty stomache- I take it before I go to bed.

The new weekness started just before my next methotrexate does, not after.

And I try to make sure I get calcium.

Kitt 09-23-2009 09:03 AM

Quote:

Originally Posted by Macophile (Post 569704)
Here is my full Drug List. However the Dr. does not think it is a drug side effect. It does weird me out though, cause I keep second guessing my body- like- does it really feel like that, or am I imagining it. I shouldn't do that, I know when something feels off, but I am so worried it will turn out to be another weird symptom that no-one knows what it is or what it means, and after a bunch of testing I will be back to square one. Or that it will turn out to be nothing (I know it sound wrong to wish it to be something, but when you are just waiting for symptoms so they can make a full Dx you want things to be something.

DRUG LIST

Migraine
1) Amitriptyline- 10mg tablet (6 at night)
2) Topamax- 100mg tablet (1 at night)
3) Magnesium- 500mg (1 at night)
4) Nerve Block (Occipital Nerve)- 9/11/09

Allergies/Asthma
1) Benadryl- 25mg caps (1-2 caps as needed.)
2) Singulair- 10mg tablet (1 at night)

Period Regulation
1) Solia- (Desogestrel 0.15mg, Ethinyl Estradiol 0.03mg) tab (1 at night)

High Blood Sugar (Important to note doc insists it is not diabetes)
1) Metformin- 500mg tablet (2 tabs- 2x a day- before breakfast & dinner, if >140 take 1, if >180 take 2.)

Irritable Bowel Syndrome/Acid Reflux
1) Florajen 3- 460mg caps (2-4 caps a day)
2) Flagyl- 250mg tablet (3 tabs a day)
3) Miralax- 1tsp daily
4) Protonix- 40mg tablet (1 tab a day, as needed)

Peripheral Neuropathy/Auto-Immune Disease
1) Gabapentin- 600mg tablet (5x a day)
2) Lyrica- 100mg caps (1 cap. 3x a day)
3) Baclofen- 10mg tablet (2 tabs. 3x a day)
4) Methotrexate- 2.5mg tablet (8 tabs per week)
5) Folic Acid- 1mg tablet (1 tab a day)
6) Vitamin D3- 1000IU tablet (1 tab daily)
7) Vitamin B12- 1000mcg tablet (1 tab daily)

Do you take all of these medications every day? Just curious.

Macophile 09-23-2009 10:39 AM

Quote:

Originally Posted by Kitt (Post 569754)
Do you take all of these medications every day? Just curious.

Yup... at different times of the day. Except the methotrexate, which is only once a week.

nide44 09-24-2009 08:21 AM

Quote:

Originally Posted by Macophile (Post 569704)
Here is my full Drug List.
DRUG LIST

........4) Methotrexate- 2.5mg tablet (8 tabs per week)

Once a week????

mrsD 09-24-2009 09:00 AM

Quote:

Originally Posted by nide44 (Post 570143)
Once a week????

Yes, Bob. This is the autoimmune protocol for using methotrexate. It is thought to minimize side effects, etc.
It is used for rheumatoid arthritis too, and other autoimmune disorders.

nide44 09-24-2009 02:20 PM

Sorry, I thought it was a typo with 8 a week listed then once a week stated.
Now I see, 8 tabs the same day, once a week.
I think I've been getting a bit confused, lately. ;(

prairiemary 09-24-2009 03:53 PM

I used to take 7 medications every day,but after doing much research,I am down to just 2,and what a difference in my life! No more passing out every afternoon,no more dopey conversations,no more humiliating my kids in public,just a few.My doctors prescribed all of them,but I am soo much healthier without them.You sure have a long list,Macophile,maybe your doctor should re-think some of them?m Just a thought.

nide44 09-25-2009 07:37 AM

Today's medicine is directed not towards nutrition or cure, but to treat symptoms. that's the pill pushing way.
If someone has many different symptoms over a period of time,
and complains enough to his, or her doc(s) - they'll invariably Rx something.
This can get to the point where someone is taking so many medications they don't know if the pills are helping or cancelling one another out.
Sometimes the side effects of some meds can give a person symptoms exactly the same as the condition being treated for - by another med.
There is a type of doc, a physiatrist, (who normally is in sports medicine) that is a coordinator of all one's docs and meds, as well as a detective for finding causes and possible treatments and cures.
We need more of this type of medicine being practiced,
rather than just a doc Rx'ng away without regard for the whole picture.

hoibie@comcast.net 09-25-2009 03:36 PM

IN my opinion Macophile is taking too many drugs. Any one drug could cause problems, but with so many drugs, it becomes more likely that a problem would appear.

Raglet 09-25-2009 07:10 PM

hi there

It is pretty usual for someone with a autoimmune disease to have a long list of medications that they take, and I notice that the Macophile has an autoimmune disease.

I take a vast array of medications also for an autoimmune disease (lupus), but seeing I have central nervous system disease, reynauds, a blood clotting disorder, seizures, sensory motor axonal peripheral neuropathy, brainstem disease, asthma, sjogrens syndrome, spasticity (hands and feet), premature menopause (due to chemotherapy for my sle in my early 30s) etc etc then all these things need to be treated to keep me functioning.

Systemic disease is just like that, which is unfortunate, and weaning down to a couple of drugs is just not possible because then I would have to choose which disorder/ set of symptoms I would like to treat - seizures, blood clots, reynauds or neuropathy???? It's vital that they all get treated.

It's a pain, but it is an unfortunate reality for some of us. I wish I could be on just two medications too, but I don't see it happening any time soon.

cheers
raglet

Macophile 09-26-2009 12:51 AM

Does anyone know if there some kind of neuropathy that can cause weakness? Or is there some kind of neuropathy that only affects one part of the leg (thigh) but not the rest? The neuro mentioned something in passing in the ER, but I didn't quite catch it.

Raglet 09-26-2009 01:22 AM

there is mononeuritis multiplex, which can cause a pretty random pattern of weakness.

But, there is also lupus myositis which can cause weakness in the thigh, and is painless. I don't know a lot about it, but I would rather suspect that it would effect both sides. It shows up in blood tests. I think there is also a primary version that can occur without lupus.

Have you had that mri yet? It would also be good to rule out small stroke seeing it affected your arm and leg on one side. Any facial weakness?

cheers
raglet

Macophile 09-26-2009 03:58 PM

Quote:

Originally Posted by Raglet (Post 570960)
there is mononeuritis multiplex, which can cause a pretty random pattern of weakness.

But, there is also lupus myositis which can cause weakness in the thigh, and is painless. I don't know a lot about it, but I would rather suspect that it would effect both sides. It shows up in blood tests. I think there is also a primary version that can occur without lupus.

Have you had that mri yet? It would also be good to rule out small stroke seeing it affected your arm and leg on one side. Any facial weakness?

cheers
raglet

I had the MRI and it was clean. And there is no facial weakness. I will look up those. Thanks!

dahlek 09-26-2009 04:12 PM

Try multifocal motor neuropathy.....BUT?
 
and neuropathy that's autoimmune can flare up and cause additional weaknesses. That happened to me in June resulting in a fracture, then the following month a dramatic break or two.
Only thing that's helped me in these instances is to work out with those Therabands and/or hand and ankle weights. Keep whatever muscle tone you can, and ideally either go to outpatient or get in-home PT to KEEP GOING! IF you lose that muscle tone? It can take MONTHS to get it back, and I'm speaking from experience...still working on it after 3 months! We tend to lose that tone much faster than 'normal' folks, for sure! I literally lost inches from my legs during my 'lay-up's and am learning to walk all over again!
Nerve conduction tests are usually the best indicators of function deteriorating.
Don't panic yet! Things can and do help at times! :hug:'s - j

Macophile 09-27-2009 05:53 AM

Quote:

Originally Posted by dahlek (Post 571172)
and neuropathy that's autoimmune can flare up and cause additional weaknesses. That happened to me in June resulting in a fracture, then the following month a dramatic break or two.
Only thing that's helped me in these instances is to work out with those Therabands and/or hand and ankle weights. Keep whatever muscle tone you can, and ideally either go to outpatient or get in-home PT to KEEP GOING! IF you lose that muscle tone? It can take MONTHS to get it back, and I'm speaking from experience...still working on it after 3 months! We tend to lose that tone much faster than 'normal' folks, for sure! I literally lost inches from my legs during my 'lay-up's and am learning to walk all over again!
Nerve conduction tests are usually the best indicators of function deteriorating.
Don't panic yet! Things can and do help at times! :hug:'s - j

Thanks! Luckily the weakness isn't so bad I'm falling. Don't tell me you are talking about EMG's? I hate them. At least the LP was just one needle.


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