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Tingling and Numbness with Rapid Paralysis
My mother is 66 years old. She is a smoker with very high cholesterol. In November 2005 she began experiencing tingling in her left big toe and two fingers of her right hand. The tingling got rapidly worse. By Thanksgiving (3 weeks after first tingling) the tingling and muscle weakness had progressed up both legs and she was forced to use a walker. By Christmas, she was wheelchair bound and only able to make it from her chair to the toilet. By mid January she had absolutely no use of her legs or trunk area and had lost the use of her left arm. She still has complete feeling in all extremities but no muscle control and severe tingling(tingling even occurs in her trunk stomach area). She also has no pain just says that she feels extremely weak. She also says that she can actually feel the weakness coming up her body(a little more each day). We
I cannot give you a formal clinical opinion as this forum is purely educational
Your mother obviously has a serious and progressive condition involving the peripheral nerves (as noted by the loss of reflexes)
B12 deficiency occurs very slowly over time, so it would be unusual to evolve so fast. It can cause pretty severe disability if untreated but the presentation with multifocal motor weakness is atypical. With B12 treatment some of the deficits may be reversible, depending on the severity and duration of nerve damage
Other things that come to mind are CIDP (chronic inflammatory demyelinating polyneuropathy, the chronic form of GBS) which causes predominantly motor weakness, is diagnosed by EMG/NCS, spinal fluid analysis and/or nerve biopsy.
Also, mononeuritis multiplex can rapidly affect one then multple nerves and has a variety of causes including vasculitis, diabetes, Lyme among others. Tests include various blood tests and/or a muscle or nerve biopsy.
Treatment is available for both conditions and consists of various forms of immunosuppression (ie steroids, cytoxan) as the dmaage is thought to be caused by the bodys own immune system.
One might also consider a paraneoplastic syndrome (as she is older and a smoker there may be an underlying cancer) or polymyositis (absent reflexes go against this but could occur in profound muscle weakness) or a rapid onset ALS type disease (caused by ALS itself or sometimes viruses like West Nile).
Ask your doctors whether these diagnosis have been considered.
Good luck
Your mother obviously has a serious and progressive condition involving the peripheral nerves (as noted by the loss of reflexes)
B12 deficiency occurs very slowly over time, so it would be unusual to evolve so fast. It can cause pretty severe disability if untreated but the presentation with multifocal motor weakness is atypical. With B12 treatment some of the deficits may be reversible, depending on the severity and duration of nerve damage
Other things that come to mind are CIDP (chronic inflammatory demyelinating polyneuropathy, the chronic form of GBS) which causes predominantly motor weakness, is diagnosed by EMG/NCS, spinal fluid analysis and/or nerve biopsy.
Also, mononeuritis multiplex can rapidly affect one then multple nerves and has a variety of causes including vasculitis, diabetes, Lyme among others. Tests include various blood tests and/or a muscle or nerve biopsy.
Treatment is available for both conditions and consists of various forms of immunosuppression (ie steroids, cytoxan) as the dmaage is thought to be caused by the bodys own immune system.
One might also consider a paraneoplastic syndrome (as she is older and a smoker there may be an underlying cancer) or polymyositis (absent reflexes go against this but could occur in profound muscle weakness) or a rapid onset ALS type disease (caused by ALS itself or sometimes viruses like West Nile).
Ask your doctors whether these diagnosis have been considered.
Good luck
Did the doctors say anything about ALS (Lou Gherig's disease)?
Have your mother's doctors completed their testing?
ALS has been ruled out. My parents have one final appt with the Doctors at Mayo Clinic this Friday to determine if there is anything else they can do.
My parents have one final appt with doctors at Mayo clinic this Friday. Currently, there are no pending tests.
First thing that comes to mind is Myasthenia gravis. Did the doctors rule it out? I know this must be very scary for you and your family.
Has your mom had any MRI's done??? What about thyroid testing. Some people dont know to ask for the T4 and the T levels (not sure exactly ) of the trhyoid gland. Some doctors only take a basic thryoid test and do not check the T levels of the thyroid. When the test is taken for just the regular thryoid test it can come back negative, but the T levels can come back showing a thryoid problem. I only know this because my sister had lots of problems they told her that her thryoid level was fine. She later went to an Endorcrinolgist who gave her further testing for thryoid specific blood work and it came back postive. She is now on medication and doing well. See if your mom had this done. Throid problems can cause havoc on a body.
My mother has had many MRI's done especially to her spine. She has also had a brain scan, cat scan and bone scan. All results were normal. I will ask my father to mention the thyroid on Friday.
Myasthenia Gravis was ruled out and honestly the symptoms associated with that disease do not sound like my mothers. In fact, the disease that most describes her symptoms in guillain barre but Mayo says they tested her for that twice and both times it was neg. We are to the point now where we would like them to treat her for it just in case the tests were wrong. Have you ever heard of anyone having GBS but not testing positive for it? We are also going to ask the doctors to consider exploratory surgery to look at her spine just in case the many mri's and cat scans missed something. At the rate she is declining we are afraid she only has weeks left unless something is done quickly.
Oh one more thing... ask yourself ( or her ) ..did she have any surgical procedures in the few weeks proceeding all the neuro symptoms? Did she cut herself working outside, maybe in the garden or on the house? Did she have any mild illnesses, like a the flu, gastrointestinal illness? Anything you can find to relay to her doctors is helpful.
We are trying to get an appointment at Shands(university of Florida) which is close to where she lives but have not been accepted yet. Someone also mentioned Acute Transverse Myelitis as a possible cause. Do you know anything about this disorder?
I don't know that I would wait for an acceptance. I think I would just probably show up on their doorstep!! As for Acute Transverse Myelitis, I have no idea. Whatever it is, it sure has progressed rather quickly. Have the B-12 shots helped yet? And don't forget to dissect her history ( even bug bites ) the few weeks before this all began. That is very important. ( See above ) Hang in there.
Sounds like Guillian Barre Syndrome (sp?), but I am not a medical expert. I have in-laws whose sister came down with this. She happened to live alone, and one day while not feeling well, fell asleep on the sofa. She woke up and could not move very well. Could not make it to a phone and fell. She was alone for two days before her cleaning lady found her and took her to the hospital, where she was pretty much paralyzed from the neck down. On a respirator, etc. It took about two weeks and she recovered fully, slowly. But, there are cases where recovery is not complete, and it takes longer. Have the doctors ruled out this? I know Shands is an excellent medical facility. Good luck and keep posting.
Hi again dear...If you are not satisfied with what you are told tomorrow at the Mayo clinic tell them you have no option but to continue your search for answers and that you will need all your mom's medical records ( to take to Shands ) including the MRI's,etc. I'd say to take her to Cleveland Clinic ( which is excellent also ) but I'm not sure your mother will be able to tolerate the airplane trip. You are the best judge of that. Keep us posted.
One little story from my nursing years....Had a patient present with complaints of severe abdominal pain, neuro symptoms galore.As she was being worked up in the hospital, she got progressively worse. She became bedridden, psychotic, had a foley catheter hooked up to empty her bladder, etc. We even had to put a nasogastric tube down to feed her. Other than pain meds, she was baffling everyone. Her family was distressed as she screamed out obscentities to them.
Her consults were many. Gastroenterology, psychiatry ( two psychiatrists told the family she was A) depressive psychotic and B) schizophrenic, nephrology, and finally a neurologist was called in. Guess what? She had a condition called Porphyria. And every time we gave her narcotics for pain, we were worsening her condition. The woman had been in our unit almost TWO months but within 48 hrs of the neuro consult ( he immediately discontinued all pain meds ), she walked out with her family, totally recovered. I gained a new and profound respect for neurology that day.
The moral of this story is...it may take awhile and some crazy diagnoses but answers are almost always found and often in the patient's favor. So keep hunting for them.
Her consults were many. Gastroenterology, psychiatry ( two psychiatrists told the family she was A) depressive psychotic and B) schizophrenic, nephrology, and finally a neurologist was called in. Guess what? She had a condition called Porphyria. And every time we gave her narcotics for pain, we were worsening her condition. The woman had been in our unit almost TWO months but within 48 hrs of the neuro consult ( he immediately discontinued all pain meds ), she walked out with her family, totally recovered. I gained a new and profound respect for neurology that day.
The moral of this story is...it may take awhile and some crazy diagnoses but answers are almost always found and often in the patient's favor. So keep hunting for them.
A P.S> That woman was also on IV antibiotics. Those were discontinued as well.
check out guillian barre or CIDP
Hi sweetie. Gosh, sounds like your doctors may be stumped for the time being. Doctors are good detectives though and you still have tomorrow with them. I don't know where you live, but if she were my mother, I would put her in the car and drive her to a univerity hospital , even if it's in another state. ( The Mayo Clinic is a good place to be but if THEY are not able to dx, then you'll HAVE to go somewhere else. )In the meantime, the neurologist on this site has been answering questions every evening..he's close to this one.
Tomorrow, do ask if they ran a thyroid profile. Fcar has something there. My guess is that they did...it is pretty standard. Myasthenia appears to have been considered, as it was ruled out. Has your mom had a positive changes with the B-12 injections?
Let us all know how you are doing with all this..and remember, the neuro on here has been answering every night. Good luck.
Tomorrow, do ask if they ran a thyroid profile. Fcar has something there. My guess is that they did...it is pretty standard. Myasthenia appears to have been considered, as it was ruled out. Has your mom had a positive changes with the B-12 injections?
Let us all know how you are doing with all this..and remember, the neuro on here has been answering every night. Good luck.
Have her immunoglobulins been tested? Did she have gastrointestinal or respiratory infection before onset? Has she been tested for porphyria? Polio?
That said, B-12 deficiency can indeed cause terrible symptoms. Make sure she is getting enough; a monthly shot for such a severe case? The most important thing is to get her to another neuromuscular expert asap.
Best of luck.
That said, B-12 deficiency can indeed cause terrible symptoms. Make sure she is getting enough; a monthly shot for such a severe case? The most important thing is to get her to another neuromuscular expert asap.
Best of luck.
Update: They admitted my mom into the hospital today and plan to start plasma exchange immediately. They say she will get this every other day for 2 to 3 weeks. Does that sound logical?
OK, I am NOT a doctor--just my 2 cents because I've been doing a lot of reading after developing neuro problems of my own.
If they're doing plasmapherisis, it's because they suspect (or have found) your mother has made antibodies to parts of her own nervous sytem. It's called an autoimmune neuropathy. Theory is, an invading virus has a part that looks similar to a part of a neuron, so your body starts attacking its own neurons by mistake. (This is how GBS is supposed to work.) Plasma exchange is an accepted treatment that often works very well for such situations. In cases where it doesn't work, or simply as an alternative, doctors many administer intravenous immunoglobulin (IVIg) as another way of neutralizing your mom's bad antibodies. Both are top-of-the-line treatments that aim to stop or reverse the symptoms.
I would still speak to the docs about methylcolabamin b-12, just in case. It's pretty cheap, no doctor has ever suggested any side effects to me, and it might be good insurance just in case. People who actually do malabsorb B-12 end up having to take high amounts; I know folks who take between 1000 and 5000 mcg a day. That would make my head spin! but it seems to work for them. And yes, there are studies showing a theoretical benefit to the methyl- versus cyano- form.
If they're doing plasmapherisis, it's because they suspect (or have found) your mother has made antibodies to parts of her own nervous sytem. It's called an autoimmune neuropathy. Theory is, an invading virus has a part that looks similar to a part of a neuron, so your body starts attacking its own neurons by mistake. (This is how GBS is supposed to work.) Plasma exchange is an accepted treatment that often works very well for such situations. In cases where it doesn't work, or simply as an alternative, doctors many administer intravenous immunoglobulin (IVIg) as another way of neutralizing your mom's bad antibodies. Both are top-of-the-line treatments that aim to stop or reverse the symptoms.
I would still speak to the docs about methylcolabamin b-12, just in case. It's pretty cheap, no doctor has ever suggested any side effects to me, and it might be good insurance just in case. People who actually do malabsorb B-12 end up having to take high amounts; I know folks who take between 1000 and 5000 mcg a day. That would make my head spin! but it seems to work for them. And yes, there are studies showing a theoretical benefit to the methyl- versus cyano- form.
Gosh! So glad to hear from you! You sort of disappeared yesterday afternoon and I was honestly WORRIED for you and your mom! WHEW! Did they explain their rationale for the treatment ( going on what Steve has to say about autoimmune disorder ) , i.e., did they explain what disease they suspected? Did the Mayo Clinic finally decide it's time for hospitalization? Or did you have to do it on your own? Good luck and we are relieved to hear from you.
hi everyone
I have a sister in law in the hospital right now with accute transverse myelitis. She had the exact same symptons as your mother but the symptons progressed more rapidly. I would suggest you do a search on transverse myelitis and you will see all the symptons. The treatment is with sterides and a product called IGG.An MRI should have shown this also a spinal tap is required. Good luck!!!
I have a sister in law in the hospital right now with accute transverse myelitis. She had the exact same symptons as your mother but the symptons progressed more rapidly. I would suggest you do a search on transverse myelitis and you will see all the symptons. The treatment is with sterides and a product called IGG.An MRI should have shown this also a spinal tap is required. Good luck!!!
One more thing about B-12. There are more sensitive tests than serum B-12; labs can test MMA and homocysteine levels. It's possible that she has a problem with the methylation cycle (not worth going into here, and I'm not a doctor). Short answer: If her injections are the common cyanocolabamin form of B-12, she might do better with methylcolabamin. You get can it at most health stores in 1000 mcg tablets that dissolve under the tongue. Talk to her doctors, and of course, don't leave any other stone unturned either.
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