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Clearwater AL

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Get Real
I have a somewhat new symptom I wonder if any others with diagnosed PLS have experienced. I take 60 mgs of Baclofen (20 mgs x 3 daily) for spasticity. Recently I’ve noticed a little more weakness and stiffness in my legs but now, hard to explain or put into words... I ‘feel’ them all the time.

It’s not fascics, ache or pain but like a very mild ultra high frequency buzz, hum or sensation in both legs (calves and thighs) day and night. If I wake up in the middle of the night it’s there, if I’m just sitting in my chair it’s there, if I am standing talking to someone it’s there. I’ve notice the same beginning with my right arm. It's the muscles not the skin. It’s not bothersome because it’s not pain, ache or fascics ("twitches" as our anxiety patients call them). Just weird. I know… ask your Neurologist at your next Neuro appointment. :) But… thought I’d throw it out there.
 
Al,
That is a different symptom; I take Baclofen also and am finding that that my muscles feel more fatigued more often. Again that feeling you get at the end a real hard work out, I wonder if over time the baclofen has lost some of its effectiveness leading to a slow increase in my spasticity and that I haven’t really noted the increase because it has been so slow.


Mike
 
Hi,
I have had that buzzing, humming feeling from the beginning. I felt it in my legs again just yesterday and often wake up with the feeling in my neck. I go to an ALS specialist that called it a quiver that is associated with spasticity. The baclofen has controlled it most of the time now (except for my neck), but if I am having a day that my spasticity is worse for some reason, I feel it again.
 
Kosmosketten send me a PM (he is reluctant to post here because he is still in the diagnosis process) but I believe he nailed it when he wrote it could be B12 deficiency. I remember now during my last Neuro appointment it was mentioned that I may need to have B12 shots once a month because my system doesn't seem to be absorbing the capsules I take. Thank you Kosmoskatten... with your knowledge I think you should be welcome to post here. Thanks again.
 
Hi,
I have had that buzzing, humming feeling from the beginning. I felt it in my legs again just yesterday and often wake up with the feeling in my neck. I go to an ALS specialist that called it a quiver that is associated with spasticity. The baclofen has controlled it most of the time now (except for my neck), but if I am having a day that my spasticity is worse for some reason, I feel it again.

I had the same buzzing in my legs early on, back in 2008. I am not exactly sure when it stopped, but it was an annoying feeling when it was happening. Strange side note...during my Lumbar Puncture they hit some kind of nerve thing near the spine, I forget what they called it. But my one leg started shaking and it hurt like #%*#, then they had me lay flat on the table and tilted it almost straight up. But after the shaking and pain it was the same buzzing.
 
Kosmoskatten is actually a she. :)

I hope it is indeed B12-deficiency, and that it is resolved easily for you.

One more thing I wrote in my PM and that came to mind again while answering a DIHALS-post, was that if someone here has nerve irritation/neuropathic tingling; circulation training ( dry brushing, range of motion exercises, a slightly detoxifying tea/drink) might help the fluid buildup from being less mobile, and that will make the nerve passageways less constricted.
 
Kosmoskatten,

Thanks for the gender reminder. I really try hard in my posts when referring to a Neurologist to make it "he/she". Sometimes I forget. But... being a male I put "he/she" so I guess it could be "she/he" too! :) My description of it be like an ultra high frequency was a little too far up the spectrum... realistically it is more in the kilo hertz frequency spectrum. Whatever... it was a concern because I know I'm kinda on the high side of oral Baclofen dosage and I wondered... is the pump next? I have a Neuro appointment soon. Thanks again.
 
I am the proactive type of person, so I have actually already discussed a baclofen pump with my neurologist, even though I am just on a small dose of Baclofen as it is now, and a long way from needing a pump.

In Sweden, people are thouroghly evaluated for a pump, to see if they are good candidates. But if you are on a high dose of oral baclofen and have been for a while, chances are you are getting resistent as well, e.g medication is not helping like it used to. My neuro said that when this happens, patients may think that their spasticity has got worse, but this is not always the case, sometimes it is just that the patient built up a tolerance. With the pump...resistance is futile!

A patient I spoke to is very happy with the Medtronic pump, since it is wireless, which means you program and change the dosage very easily. There are many brands, but my neuro also said the newer wireless ones are preferred.

Getting the dosage right might take a couple of months, and during that timeperiod, spasticity may increase, which it also may after the insertion of the pump, due to the trauma. But, I am sure your neuro will talk about this, so I am not going to rant about it too much. One thing, that apparently is seldom mentioned, is that you might get low blood pressure, for example when getting out of bed.

Good luck, and hope that your neuro can decide what is best for you.
 
Clearwater,

How interesting -- because you describe a symptom I have (in fact, just referenced this in a post to Maggie's thread).

Vitamin B12 deficiency CAN cause this "buzzing" sensation -- which, it seems to me, may be some form of "restless" syndrome.

If we are referring to the same sensation (who knows for sure), I can only describe it as a really weird, uncomfortable, "I want to jump out of my skin and can never get comfortable" buzzing, itchy feeling. In my case, this will awaken (read: shock) me out of a dead sleep; this will occur many times a night. The best way I can describe it is that someone is tickling the inner side of your forearm, yet you CANNOT move it. It's pretty horrible, actually.

For me, the symptom comes and goes -- it will go away for several weeks at a time (thank goodness), but then recur with a vengeance. I've had this "thing" -- first in my legs, and several years later the symptoms migrated into my arms -- since I had my first low back surgery in 2002.

I've read elsewhere that there MAY be a connection between all MND and "RLS" or restless legs syndrome (for a limited number of people, as RLS becomes more severe, it tends to surface in the arms).

NOT pleasant -- at all. To tell the truth, I'd much rather have pain.
 
All, did some research on this. Following is a very good article describing the possible relationship between RLS-type symptoms and neurological disorders: Restless Legs Syndrome in Neurological Disorders - Health tips

While the relationship between MND and RLS is not discussed in great detail in this article (because they clearly do NOT know), there is evidence of a relationship between Multiple Sclerosis and RLS. We've discussed before our common belief that ALS is likely a variant of ALS -- if so, then the following article from the NIH very clearly applies here:

Restless legs syndrome in patients with amyotroph... [Mov Disord. 2010] - PubMed - NCBI

Clearwater, does this article seem familiar to you -- as it relates to the symptoms you describe in your initial posting?

I very much believe that there is a relationship between these conditions, and that researchers will one day establish a clear connection between RLS and MND -- I say this as both are very clearly related to the nervous system.
 
RLS can be both primary and secondary, and I have met a lot of people with various neurological problems (in med school ), that have been diagnosed with the secondary form. And it is (at least in Sweden it seems ) quite often confused with vascular issues that can produce similar symptoms.

There is also research going on that RLS has to do with dopamine levels, so there has been some success with treating it with Parkinsons medication. So it is definately getting there in terms of it being related to the nervous system.

So, I want to give some quick tips (apart from the one I already gave about circulation boosters );

- RLS is usually at its worst during the night. One thing that sometimes helps is taking a hot bath and then showering off really cold the last thing you do. One alternative if showering is too much, is using a ice pack on the affected areas after the bath.
- Avoid all forms of caffeine. Not just in the evening, all day.
- Try taking Aspirin to get the circulation going. Aspirin does not improve circulation per se, but it reduces the clotting mechanism in the blood, which means to put it simple, slightly thinner blod, which gives circulation relief. Which has proven to relieve RLS wether it is primary or secondary.
 
I had this buzzing feeling during the first few years of the disease. I noticed it most at night lying in bed but if I was sitting quietly I could also feel it. I noticed it mostly in my legs but I had it all over. Some days I had it more. It gradually diminished over several years. I still have it on occasion but it is really diminished since the early days.
 
Thanks for all the replies and info. Well... recent lab work came back and now the B12 is within acceptable level. Whatever... I'm going back to my comfort zone of, "What it is... is what it is." It's not denial but it's becoming a great big "WHATEVER!" and move on to trying to get grass to grow and keeping busy with the things I can do. (I've got places in the lawn where I believe years ago they dumped nuclear waste.) :) Thanks again.
 
RLS can be both primary and secondary, and I have met a lot of people with various neurological problems (in med school ), that have been diagnosed with the secondary form.

Kosmoskatten, do you believe, then, that RLS (and restless arms syndrome - the more severe form of RLS) are co-morbid with other neurological disorders?

If so, what do you think about the extent of co-morbidity of RLS with PLS (and even HSP) given that PLS is also deemed to be a variant of ALS (the VA, Johns Hopkins, and other)?

Whatever the answer, I CLEARLY have PLS and Restless Legs (and Arms) Syndrome...ain't no doubt about that. :)

Thanks in advance!
 
Well I am no doctor, but this is what I think/what I have learned;

There are a number of different theories about RLS, where iron deficiency and dopamine are the most interesting. (For me at least, hehe)

The most common finding in RLS is iron deficiency, and that is also what is believed is the strongenst environmental factor. But what is interesting here is that they have actually found an iron deficiency in tissue and spinal fluid of RLS patients even when their iron serum (blood )level is normal. Studies also support an iron dysregulation in the brains of RLS patients ( they have this project where people actually donate their brains to this research ). But the problem at the moment is that we do not know enough of the blood-brain system and how it is regulated to get to the bottom with this.

Why am I mentioning this? I do because where was this iron regulation especially prominent? In dopamine producing cells.

So then onwards to dopamine. What has been seen is that dopamine drugs traditionally used in Parkinsons Disease treatment has also been found to alleviate RLS. This is what i mentioned before. To jump over to other neurological diseases there are dopamine responsive dystonias for instance.

So where am I going with all this. I think the answer lies in our genes, even in sporadic PLS and ALS. That certain genes interact with the dopamine system to set in motion a susceptability to eventually develop these diseases. And similar certain genes interact to make someone susceptible to neuronal loss.

And here is where I might go a bit controversial. I actually think that ALS, PLS, Parkinsons, RLS etc might be different expressions of a common etiology, where different genetic markers and environmental causes together causes a neurotransmitter or neuronal loss that eventually goes beyond the threshold for clinical disease.

There are also studies that support that Parkinsons and ALS-patients show she same dopaminergic deficits ( to try and explain it, these are pathways in the brain that transport dopamine from one part to another ). The same study shows indications of a shared genetic susceptability for the disease. All these studies are done on sporadic cases.

To put it simple. Yes I think they are connected, and I just wish that even more research and funding was put into genetics, because I think this is the only way we can fight these diseases.

I hope this medical blabber wasn't too boring, I tend to get into it when I start.
 
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