Does Anyone Here Have MS or Extreme RLS?

4 years ago

DH is in hospital. They're raising his low sodium level, but there's no progress on the debilitating problem of the extreme muscle spasms above his knees. They come mostly at night, 10 seconds apart, lasting for hours. He's not able to sleep. We've been pillar to post with MDs since this began in September. Now it's worse. The closest I can find online that describes these spasms is "Monoclonal Seizures", if that mean anything to any of you.

I hadn't realized that these nightly spasms are common to MS, but evidently they are. I see various things prescribed for such patients: Requip, Mirapex, Neucontin, Lyrica, Pregabalin, even Methadone.

Today a neurologist he saw months ago suggested a Nerve Study (NCS). I don't know why they won't do this while he's in the hospital, but they say it is out-patient. He also has to schedule an MRI of his liver -- another out-patient thing. (Why IS that? They don't have the machinery IN the hospital?)

All ideas welcome! I should get him back tomorrow. Pretty quiet at home without him.

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chisue
Original Author

4 years ago

last modified: 4 years ago

What wonderful help from special KT friends! Thank you!

DH was discharged yesterday afternoon. Told to schedule a nerve conduction study (sensors on the skin). This is not the invasive nerve study where electrodes are inserted into the muscles. The Hospital Primary handling the discharge cautioned that the hospital will always do a zillion tests and pursue every little abnormality -- so he should discard some of the long, lonesome trails that could follow up on those. (A nodule on his liver, for instance.) She said we could try the B12 and the ALC; it couldn't harm him. They want him to continue with sodium cholride 1000MG tabs twice daily for a while (none available at the pharmacy until Tuesday, so I wonder what we could do with plain table salt.) She gave him Baclofen 5MG (muscle relaxant) to take before dinner.

This morning I finally reacted to the stress with shingles -- a forgone conclusion for me. It's just on my left temple. Had it on right temple 15 years ago. I took two of the 500MG Valcyclovir that I'd been issued when I stared infusions for my Multiple Myeloma and called the cancer center. The doctor on call gave me 21 more Valcyclovir, and I'm confident this will ease the problem as it progresses. I'll be better if we can help DH...and once the Monogram tech comes Wednesday to repair our fridge -- freezer works/refrigerator side is at 50F. DS brought be a little fridge he's used at flip houses...a lifesaver, but *so tiny*!

When I picked up the Valcyclovir I got DH some sublingual B12 5000MG lozenges. The pharmacist didn't know anything about ALAcid, but I'll look on Amazon.

Raven -- With help from our own Jasdip, we bought an electronic muscle stimulator (Creliver is the brand). It has foot pads and pairs of stimulator pads for use on the body. We're just learning to use it, putting the power to 30 and trying various 'modes' of current patterns. We haven't tried the pads yet. I see you use something like this at night; DH says he'll try the foot pads tonight. He's also taking CALM, a magnesium and melatonin powder, at night.

I can't tell you how much it means to me to have your help and support! Thank you.

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Comments (30)

llitm
4 years ago
last modified: 4 years ago
I hesitate to weigh in because I don't have your husband's problem but my dr. recommended alpha lipoic acid (otc) which has helped tremendously with neuropathy related to B12 deficiency. It is known to help heal the myelin sheath surrounding the nerves. I'm currently taking 1200 mg/day (600 mg a.m. and p.m.) but expect that to be reduced at some point.
lily316
4 years ago
I have nothing to offer but I hope you find your answer soon. I'll bet it's frustrating.
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Zalco/bring back Sophie!
4 years ago
I am so sorry you and your husband are going through this, chisue. How annoying to be in hospital and unable to have everything taken care of in situ. Going to various medical appointments seems like a hard thing to do when one is seriously unwell!
chinacatpeekin
4 years ago
Chisue, I’m so sorry that you and your husband are in this frustrating and puzzling situation. I have nothing to add medically; I wish I did. I’m going to assume you’re already at a major medical center/teaching hospital. The information from the nerve study and MRI may shed some light. I hope you get some answers soon, and a course of treatment. Sending hopeful and healing thoughts to you both.
Alisande
4 years ago
I have no help to offer, Chisue, but I'm sorry you and your husband have to go through this. I hope it gets resolved soon. Please keep us posted.
Elmer J Fudd
4 years ago
Sorry, hope they can get it controlled. Best wishes for both of you.
PattiG(rose)
4 years ago
Chisue, I hope they can find a resolution for your husband with the nerve study.

My sister has RLS and takes Mirapex, but you may have already explored a pharmaceutical option.

I know RLS can be miserable to deal with.
jane__ny
4 years ago
My husband had RLS for 40 yrs. It was horrible. Eventually he was put on Mirapex and it stopped. Sometime he'd forget to take it and his legs would start 'jumping' and keep me awake. I made sure he took it or he slept in the guest room.

I would ask about starting him on Mirapex. It really works.

Jane
bpath
4 years ago
My aunt has RLS and neuropathy. I know she takes gabapentin, I will ask her if anything helps the RLS. I’m so sorry you are dealing with this. And such a pain to not have that kind of testing on hand!
sjerin
4 years ago
As I've mentioned several times, my (late) mother had severe RLS for many years. She tried all the usual offerings and got to the point where none of the rls drugs helped. So on to opioids, which was the only reason she got any sleep. Oxycodone for several years, then Fentanyl and finally Methadone, of all things. At first it seemed a little frightening but by the time she had to use these drugs, she was in her 90s. I find it a little amusing that my sweet little mother died a drug addict, in a sense. But again, she couldn't have survived without them. She was never "goofy" on the drugs, just sleepy, with her legs at rest.

I feel very badly for your dh and for you, Chisue. Have his doctors tried any of the MS drugs? You might need to be a little pushy to get him the help he deserves. I take it he's not a young man, unless you robbed the cradle. :-) Sooo, who cares which drug he needs, if it helps him sleep and lead his life and doesn't give him miserable side-effects? I have strong feelings about Gabapentin, which I've written about previously. I wish the best for both of you.
Annie Deighnaugh
4 years ago
I'm so sorry you both are going through this. I'm all for western medicine, but if I've exhausted those avenues to no avail, then I'm willing to look elsewhere. I have many friends who have been helped by things like acupuncture. My neighbor is a well-educated practitioner of Chinese medicine who started with it when western medicine failed him and told him he'd never walk again. He is perfectly healthy now and has many patients who swear by his treatments. Certainly we have benefited from medicines he's suggested for us as well. Either way, I hope you find answers soon! Medical limbo and the medical/industrial complex is a horrible place to be.
socks
4 years ago
Ohhh, Sue, I’m so sorry and hope he gets some help very soon. He's miserable but I know it’s hard on you too. I hope they allow you in the hospital. Thinking of you….
User
4 years ago
No advice, but like your many KT friends I offer good wishes.
Nina Kruse
4 years ago
Your topic caught my eye because I have MS. but in my case it stands for multiple sclerosis. Multiple sclerosis damages the myelin sheath of the spinal cord, I suffer from similar muscle spasms and have found that I am more likely to suffer from them when I have forgotten to take my sublingual B-12. I take 5000cmg. B-12 Capsules or pills, are a waste of money because the body does not absorb the B-12 properly. Sublingual B-12 is OTC, even though my doctor has asked me to use it. It does not require a prescription. I hope that your husbands and you find answers and relief soon.
Jupidupi
4 years ago
I agree with Annie that Acupuncture is worth a try. I had excruciating pain years ago and Vicodin didn't begin to relieve it. I'm phobic about needles, but was desperate. Acupunture not only helped with the pain, but the sessions were so relaxing that I would fall asleep on the table.
chisue
Original Author
4 years ago
Thank you all! It means so much to me to have the KT support, AND so often 'the wisdom of crowds' found here can be distilled, resulting in real help for so many problems.

I don't know if DH will be discharged today or not. His sodium level is rising, but not yet up to the threshold 131. There's been no help for the muscle seizures, other than for us to arrange out patient tests. So frustrating! I wonder if that would be different if he were not in our smaller branch of Northwestern Hospital, but in the city (Chicago).
Yayagal
4 years ago
last modified: 4 years ago
I tried everything for muscle cramps in thigh until I found this. https://theraworxrelief.com/product/theraworx-relief-spray/?utm_source=Google+Shopping&utm_medium=cpc&utm_campaign=google-feed&utm_source=google&utm_medium=cpc&gclid=CjwKCAiAx8KQBhAGEiwAD3EiP-EgPkF7qWwoTWK5IQFBlefikFrn_rffrXitGmw5Q1QxaiLtZwf6oxoCR-8QAvD_BwE It is worth a try and, also, otc B12 vitamin and magnesium
llitm
4 years ago
If his B12 levels haven't been checked, I would ask about that. Mine were within normal limits but on the low side so ignored for awhile. Finally, it was suggested to significantly increase B12 and add alpha lipoic acid and my neuropathy improves daily, sensation in legs and feet almost back to normal (it had become extremely uncomfortable). Agree with looking at magnesium. A friend says it helped with her RLS though I don't think hers was as bad as your husband's. One of the next steps for me would have been acupuncture but I don't believe it will be necessary now.

Best of luck and please check back!
chisue
Original Author
4 years ago
Whatsayyou18 -- DH's B12 was 500 in November; do you know your level? His Glucose is currently 103, and his primary says his tests indicate inflammation. I see that the Lipoic Acid reduces both of these. He doesn't have 'Fatty Liver' or a thyroid problem, both contra-indicators for the acid. I will ask about adding B12 and Lipoic Acid. Thank you.

DH says they've disconnected his leads this morning and his Sodium is 131 on the 4 a.m. draw. They've done another draw at 8 a.m. The hospatilist will decide if DH can be discharged. I'm sure it wouldn't be until after 12 o'clock; that's when the charge clock will have tripped over into today.

sjerin -- Ha-ha. DH is 83, and I will be 81 next month. We were 26 and 23 when we married. I agree about quality of life for the life that's left at this point!
ravencajun Zone 8b TX
4 years ago
I have RLS severe at times. I have a disease similar to MS. Which affects the myelin sheath of the nerve. A few things I have found help when they are bad. Use my tens machine on my legs before bed. I have one of the hammer type massage machines, using it on low on my legs and arms. Massaging the upper and lower arm is helpful because those areas help send messages to the brain to send more blood to the muscles of the legs and arms. I take Amitripitiline every night and I take a tiny amount of tramadol every night. I use theraworks lotion on my legs. I take chelated Magnesium.

If he has a low sodium level that can be affecting it too. Electrolytes being in balance is important. I sometimes take a tiny piece of my pink

himalayan salt and let it melt in my mouth. It definitely helps when my feet are having spasms. Of course drinking electrolyte drinks can help, like Gatorade.

Best of luck to you and him. I understand that situation.
llitm
4 years ago
last modified: 4 years ago
Chisue, my B12 was 453. According to the dr. who got serious about my B12, by US standards I wasn't deficient but by Japanese standards I was. FWIW, for the past two weeks I've been on 2500 mg of sublingual methyl (supposed to be better absorbed) B12 twice a day and 600 mg of alpha lipoic acid twice daily. My dr. recommended B12 injections which I'm leaning toward.

One other product he might want to look into is Metanx (https://www.metanx.com/), a prescription supplement which includes B12, B6 and folate. My dr. gave me enough samples for six days and I'm not sure how much benefit I received (started them at the same time as B12 and ALA) but it definitely didn't hurt. I'm probably going to continue with them for three months and then re-evaluate. They do have a money back guarantee.

ETA: When I initially was seen by another family practice clinic, the levels of B12 and ALA they recommended were much lower. There was some improvement but it wasn't until the dosages were significantly increased by another doctor that serious improvement was noted.
samkarenorkaren
4 years ago
I had nerve damage in my leg and it felt like I was being stabbed with a hot poker at night. Dr's told me there was no cure but it would heal naturally....about 1/2 a year. Took about 20 years for it to heal for me. Only thing that helped me sleep was Melatonin. I also have mild RLS but I just deal with it.
llitm
4 years ago
Chisue, I've sent you a PM.
PRO
mdln
4 years ago
So sorry you are going through all this.

A reason they might not be doing the tests while he is inpatient, is to get him discharged sooner. Sounds like you're @ LF, they've been tight w/ beds since the new hosp opened, even before COVID.

These are some in-system docs who specialize in RLS. (Yes, IMHO, for some specialties you can find better docs downtown.)

He's a full professor. https://www.nm.org/doctors/1427089119/hrayr-p-attarian-md
https://www.nm.org/doctors/1013440221/alexander-j-choi-md-mph
Has LF office. https://www.nm.org/doctors/1205089166/jessica-a-cooksey-md
Like she did fellowship @ Rush. https://www.nm.org/doctors/1053753129/anjali-gera-gopal-md

Good luck!
chisue
Original Author
4 years ago
mdln -- Gosh, I know I wrote a thanks here, but don't see it now. So...THANKS!

An update: We finally saw an MD (a rheumatologist) who ordered a SPINAL X-ray, then, seeing the extent of the 'normal' degenerative disease, an MRI. That can't happen until March 9. A friend at the hospital was able to get us an appointment with a highly credentialed neurologist who is a professor at Feinberg (Northwestern's medical school). That's March 16. Pinning hopes on him!

Meanwhile, DH is still having the violent muscle contractions when prone. Baclofen (muscle relaxant) sometimes helps. He's also taking Naproxen (a stronger dose than Aleve). The spasms start within 10 minutes of his lying down at night and continue every 10 seconds for hours. Sometimes he can sleep through them. The muscles evidently 'give up' most nights by 1 a.m. -- or he gets up and walks and tries to sleep again. I wish he could see the Sleep Study neurologist sooner; appointment in April. Maybe the man we see March 16 can help move that up. His feet and calves have yet to fully return to normal size after one other muscle relaxant helped swell them 300 percent a month ago. BP continues a bit too high despite Lisinopril 40MG; likely stress.

We've discussed *hydration* on the KT, so let me relay what the hospital primary doctor told my DH: "Drink four glasses of water daily. Drink when you're thirsty." His consumption of the 'literature recommended' 60 ounces daily put him in the hospital with a severe sodium deficiency, for which he is now taking salt pills twice a day for two weeks. It seems 'more' isn't always 'better'.

whatsayyou -- DH is taking your suggested sublingual B12 500MG twice daily and the lipoic acid 600 twice daily. The hospital primary said only, "It can't hurt." <smile>

Jasdip and Raven -- The electronic foot stimulator didn't help and we're returning it prior to the 30 day trial end. It was well worth a try, but DH's problem is evidently different.

All help and support here has been a great comfort. Thank you!
llitm
4 years ago
Chisue, thank you for the update! I've been thinking of you and am happy to see you've been able to schedule appointments with the appropriate specialists. I've read that these issues can take a very long time to improve once treatment has begun so exercise patience and don't give up.

Very interesting about dr's water consumption recommendations!

Chisue, I hope your Shingles is improving and that you're able to take care of yourself, too!

Please continue to update; I'm sure your experience will help others, too.
PRO
mdln
4 years ago
Do his symptoms only occur when he is supine, lying down? Does he get them when standing, sitting, or walking?
chisue
Original Author
4 years ago
Thanks for the encouragement, KT friends.

mdln -- These violent muscle spasms come within 10 minutes of his lying down on his back. They occur in both legs. Using two pillows helped his breathing and thus, his sleep, but not the spasms. He has had a few less extreme spasms while sitting and his knees are very sore. Last night I persuaded him to lie on his side with his knees tucked up towards his chest. He is very stiff from the spasms, so he can't get the knees *on* his chest -- something I do to relieve back pain from spinal stenosis. Voila! No spasms while he's in this position. They return when he lies on his back. This seems to me to confirm that the origin of the spasms is in his back -- which I've always thought as he's lost three inches in height over the last two years.

DH has a PT assessment Wednesday. PT helped with my back pain. Both of us have similar spine deterioration: L3 collapsing on L4 and L4 on L5.
PRO
mdln
4 years ago
Good dectective work! Hope you and new docs/PT can help him find some relief. Glad to hear PT helped you.

Does Anyone Here Have MS or Extreme RLS?

chisue
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