Problems with Cognitive answers but Nuero says SFN

[rluck9974]

Hi,

Long story condensed into a few paragraphs. lol. I started out with numbness in my left big toe and it has since progressed into pain and numbness in both legs. Not a pain but a cramping pain that doesn't let up. This has all taken about a year to develop. Before that I had surgery on the same left foot for a torn ligament. The numbness started about two months after they took the cast off. Podiatrist tried PT, tramadol, tens unit and then sent me to the Neuro after nerve conduction study revealed tarsal tunnel in the left and right foot. The Neurologist at UCI in Irvine CA immediately said it's probably not Tarsal Tunnel because they did all the tests for vibration and feeling and I also had hyperreflexia in both knees. She sent me for a MRI of my cervical and lower back along with every blood test for autoimmune disorders. MRI only revealed a partial problem with my cervical L5 and it was nothing that would cause my numbness but maybe the hyperreflexia. All the bloodwork was negative. I have had random back and my neck has been constantly stiff for the past few years and I sometimes get really bad muscle spasms in my lower back so I was really surprised at the results because I was expecting to be referred to a spine doctor.

The Neurologist then referred me to the Neuromuscular center at UCI for additional testing. This included more blood tests for plasma disorders and immunofixation. All came up negative except for a Kappa Lambda Ratio and low Lambda levels. The Neuro wasn't concerned because the immunofixation came up negative but if it hadn't I would probably be looking at Multiple Myeloma. She just said it was non specific to my problem and not to worry.

She then performed a EMG which came out negative. So I don't have ALS or any other plasma or autoimmune disorders so they just assumed small fiber neuropathy. Then I had my follow up appointment after two months of having the EMG. By this time I had full on cramping legs, numbness in feet, sometimes hands and arms to go along with weakness in my legs. I also have extreme fatigue and going up stairs was a challenge. I used to be able to go to the gym for two hours, come home and then do yard work for another 2 hours and be fine. Now I am lucky to not be exhausted after an hour at the gym and come home sore.

My last appointment was yesterday July 19th. The Neurologist did her usually exam, testing reflexes and everything else and she asks me point blank. What is today's date. I immediately responded by saying January 19th, she said try again. I said September 19th. It took me four tries to get it right and I swear I couldn't remember the date if my life depended on it. I was way off. She said that was alright and then continued on never to talk about it again. She then went to the attending neurologist and they came back in about 20 minutes later. They basically just said I most likely had small fiber neuropathy and never mentioned my cognitive issues during the exam. I was really disturbed by it and I wish I would have said something but I didn't because I have never had any problems even remotely like that. I know the doctor who examined me did write it down. I don't consider myself out of shape. I am 41 and I work out 3-4 times a week and I have never had issues of memory but for me to say something so off was really weird. I wasn't nervous at all so I really don't know what to make of it. When I questioned the doctor for additional testing for small fiber she said they don't do that anymore and they have to send out to Stanford for the skin samples they collect. She seemed kind of evasive almost like she was just trying to get me to accept what she was saying. To me it looked like she was uncomfortable talking to me like you know when someone wants to tell you something but they don't want to upset you. They also scheduled my next visit for 6 months and said we are just trying to treat the symptoms at this point and it's frustrating to try to pinpoint small fiber but a lot of times it's idiopathic.

I kinda of feel like my issues are related to MS or something else rather than small fiber and for them to ignore what I said, it seems like they are just having me come back in 6 months to see if my symptoms progress. I have never had a brain MRI to this point and have had pretty much all of the blood testing including B-12, diabetes. Basically everything that would cause numbness has been negative even gluten was negative. Does this sound MS or am I just being paranoid and do I have accept small fiber and the diagnosis?

Sorry for the long post. Thanks in advance for anyone responds.

Rich

[oddity]

Hi Rich, your story sounds similar to mine. I'm a 46 yr old male. Up until a little over a year ago I was working out 4- 5 times a week. Then bam strange weakness and pain in my legs, twitching in my calves and some upper body tremors.
I'm surprised you have not had a brain MRI. I have had 3 and all show non- specific subcortical white matter lesions. An MS Specialist has told me this is not ms. Like you they say I have small fiber neuropathy.
My current problem is twitching in my lower legs, occasional itchy burning pain in my legs, and sometimes while laying in bed I find I must constantly move my legs. Like a restless leg syndrome. The ironic thing of all this is that it it is exacerbated by activity. Not good for someone who was so active prior. You can probably relate?
I have had a lot of test and all are normal accept for brain MRI.
It sounds like the neuromuscular dept at UC Irvine is pretty good. Would you recommend them?
Are you on any medication? I take 300mg neurontin 3xday and it does dull the pain.

[rluck9974]

Yes I am experiencing the same symptoms as you and I don't know why they have not done an MRI of my brain. I have excellent Insurance so that shouldn't be an issue. I can't even go to the gym like I used to without feeling sore and tired. It almost feels like I have never worked out before but I have been going for 10 years. I bet you know that feeling. I use to be able to go to the gym for a couple of hours and come home and then do yard work for 2 more hours and be totally fine the next day. Now I am wrecked if I even do yard work for 2 hours. I just think they feel like my symptoms are small fiber and nothing else but I have had random back spasms for at least 8 years and the previous MRI of my spine showed very little changes that would cause it. I am thinking they don't really know yet and they are just waiting it out to see if my symptoms worsen to warrant additional testing. I even failed the romberg test and it wasn't mentioned again.

Since going to my last appointment, my symptoms have progressed and my legs are heavy and painful to go along with burning and numbness. My hands are stiff and my thumb joints are swollen. I mention this to them every time I they are just like yeah they are swollen but there is no followup. I even talked to them a week later because they called to check if I am feeling better and I told them that the pain was getting worse and they were surprised because they have me on Lyrica 50mg a day and bacoflen 10mg. It's only been a couple of weeks but so far they have done nothing. They told me to call in a week or so and they can adjust my dosage if needed. So that makes me suspect that they are just waiting it out like me to see if it is actually small fiber. Apparently they don't do skin biopsies unless you show autonomic symptoms, low blood pressure, breathing problems which I don't have.

I would definitely recommend them as my Neuro is one of the leading doctors in regards to small fiber and neuromuscular disorders. She also specializes in ALS so it's creepy to go and see a bunch of people with ALS in the waiting room. I was tested for ALS and it's pretty scary to think you might leave knowing you have ALS. Fortunately my large fibers motor neurons are excellent. They do seem like they care and every appointment I have been to has been at least an hour. I am going to request my medical records since my next appointment isn't for 6 months to see there is any thing they are thinking that they haven't told me just so I can stop worrying about it. I might even get a second opinion from another hospital since my deductible is almost met and just request an MRI of my brain since UCI hasn't scheduled one yet.

Here is the link to UC Irvine
http://www.ucirvinehealth.org/medical-s ... ar-center/

[lyndacarol]

I am going to request my medical records since my next appointment isn't for 6 months to see there is any thing they are thinking that they haven't told me just so I can stop worrying about it. I might even get a second opinion from another hospital since my deductible is almost met and just request an MRI of my brain since UCI hasn't scheduled one yet.

Hi, Rich,

As you go through your medical records, note if any doctor has ordered a vitamin D test (the "25-hydroxy D" blood test). If not, I suggest you call your GP and request it – request your own copy of the test results as well (it is important to have the actual numbers). The test is inexpensive (usually about $50-$70) and is usually covered by insurance.

Vitamin D deficiency is extremely common – even in California! Vitamin D is required by virtually every cell in the body; a deficiency can affect any system and can result in symptoms such as yours.

[oddity]

Your doctors do sound good. It is strange they have not ordered a brain MRI. I would assume it was because you have passed the Neuro physical exam without any issues.
I just read a book about vitamin b12. The author states that low b12 levels can mimic MS ME and even cause non specific white matter lesions. The author states that even if you have high b12 serum levels you can still be deficient especially if you have high homocystein levels. They state you must get an MMA urine test to find out if your true b12 levels. I'm pushing for this test now. The book states that if you are b12 deficient with proper treatment the symptoms can be quickly
reversed. Things like body twitching, numbness, tingling, leg pain etc. I recommend getting the mma test.
As for me, my symptoms persist. Gabapentin does bring me some relief.

[rluck9974]

My B-12 levels were really high back in Feb when I was tested. They were at 2000. This was due to taking a B-12 supplement for energy which I have stopped. They told me it doesn't matter what level you are at with B-12 as long as it is not low and it's only harmful if you have high B6 levels. Those levels were a little higher than normal on my last test in May but there was no reason for it as I only take one multi vitamin a day. It was barely over the limit for normal so they didn't really mention it. I think I am just stuck for now to see if I hopefully don't develop any more symptoms.

The bright spot is if it is small fiber than it may just go away on it's on although I think all of my issues are due to some kind of auto immune response to the surgery I had on my left foot. This all started after the surgery within a couple of months and has progressed. I mentioned this to the doctors but they basically dismissed it as being a coincidence. I try not to suggest too much to them because I don't want to seem like one of those wannabe doctors who got his degree on the internet. I don't want to get them thinking that this is all mental for me.

[lyndacarol]

My B-12 levels were really high back in Feb when I was tested. They were at 2000. This was due to taking a B-12 supplement for energy which I have stopped. They told me it doesn't matter what level you are at with B-12 as long as it is not low and it's only harmful if you have high B6 levels. Those levels were a little higher than normal on my last test in May but there was no reason for it as I only take one multi vitamin a day. It was barely over the limit for normal so they didn't really mention it.

In support of your very wise doctors:
In the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O. (This may be available at your library.). On page 11, these authors state:

“For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/mL.” http://b12awareness.org/could-it-be-b12 ... diagnoses/

page 253: “Humans and other mammals are all born with serum levels of about 2,000 pg/ml, which decline gradually throughout life.” (J.V. Dommisse)

Now… What was your vitamin D level?

[rluck9974]

I was not tested for Vitamin D but I do take a multi vitamin that contains Vitamin D. I seriously doubt that it is low considering my diet which is generally healthy and the amount of exercise I do weekly (although not as much as I used to because of the pain levels). I also have a pool which I frequent during the summer months that gets full sun during the afternoon. Living in So Cal sun is generally all year around as well so that's why I don't think they test for it. It's very rare for someone not to have sufficient vitamin D levels especially in this area.

[lyndacarol]

I was not tested for Vitamin D but I do take a multi vitamin that contains Vitamin D. I seriously doubt that it is low considering my diet which is generally healthy and the amount of exercise I do weekly (although not as much as I used to because of the pain levels). I also have a pool which I frequent during the summer months that gets full sun during the afternoon. Living in So Cal sun is generally all year around as well so that's why I don't think they test for it. It's very rare for someone not to have sufficient vitamin D levels especially in this area.

I still think it would be a good idea for you to ask your GP for a vitamin D test.

If you are deficient, there is not enough vitamin D in a multivitamin to correct a deficiency.

I encourage you to read through the southern California-based GrassrootsHealth website (www.GrassrootsHealth.net), which has much information from most of the world-renowned vitamin D experts. They also have links to many YouTube videos from UC, San Diego.

[rluck9974]

FYI, not everyone has deficiencies in their vitamins levels but that seems be the general reasoning for your posting in all of these threads. Numerous threads all have you saying the same thing regardless of the topic. I don't even know if I have MS or if it is small fiber at this point but my symptoms ARE NOT from a lack of any vitamins and for you to just assume everyone's problems are due to a lack of this vitamin or that vitamin is just ignorant and ridiculous. I was an extremely healthy person up until about a year ago and then I had foot surgery. The numbness and pain started after the foot surgery. Does that sound like I am deficient in any vitamins if I didn't have numbness before the surgery? Vitamin deficiencies just don't happen all of the sudden while still maintaining the same diet and exercise routine over the years.

Kinda of annoying that this crap goes on at a public forum where people are just looking for solid advice, not someone's strange motive for steering them to a book and website which has a 99.9% of not helping whatsoever.

[lyndacarol]

FYI, not everyone has deficiencies in their vitamins levels but that seems be the general reasoning for your posting in all of these threads. Numerous threads all have you saying the same thing regardless of the topic. I don't even know if I have MS or if it is small fiber at this point but my symptoms ARE NOT from a lack of any vitamins and for you to just assume everyone's problems are due to a lack of this vitamin or that vitamin is just ignorant and ridiculous. I was an extremely healthy person up until about a year ago and then I had foot surgery. The numbness and pain started after the foot surgery. Does that sound like I am deficient in any vitamins if I didn't have numbness before the surgery? Vitamin deficiencies just don't happen all of the sudden while still maintaining the same diet and exercise routine over the years.

Kinda of annoying that this crap goes on at a public forum where people are just looking for solid advice, not someone's strange motive for steering them to a book and website which has a 99.9% of not helping whatsoever.

Apparently, I have offended you. I apologize.

[rluck9974]

Not offended at all just annoyed because you seriously can't have the same answer for everyone that you know very little about. Everone has different symptoms. Makes zero sense.

[rluck9974]

My current problem is twitching in my lower legs, occasional itchy burning pain in my legs, and sometimes while laying in bed I find I must constantly move my legs. Like a restless leg syndrome. The ironic thing of all this is that it it is exacerbated by activity. Not good for someone who was so active prior. You can probably relate?
I have had a lot of test and all are normal accept for brain MRI.
It sounds like the neuromuscular dept at UC Irvine is pretty good. Would you recommend them?
Are you on any medication? I take 300mg neurontin 3xday and it does dull the pain.

My Neuro at UCI has sent in for a consult with a physiatrist. Never heard of it until she told me that they specialize in muscle and nerve disorders and take a broader view of symptoms and because my symptoms have progressed they feel it's necessary to add this doctor to the team of doctors I already have. I don't know what team means or if it's bad or good but at least I am getting my monies worth and they are actually taking steps to see what's going on rather than just prescribing meds and see you later. Don't know if it relates to MS or not but from google searches they do seem to be able diagnose certain conditions better than neurologists.

Meanwhile they increased lyrica and baclofen because as I wait for that appointment. How's it going with you? Have you ever been seen by a physiatrist?

[Scott1]

Hi,

Do two things. Firstly go to a good massage place and get them to go over you to see what they find that is tight. It sounds, so far, that nothing much that's "hands on" has been done. Do that because it might help and it gives objective feedback that might highlight issues you don't feel.
Secondly, get a uric acid test done. If you are below the reference range then there is definitely something happening.

In addition, get tested for mycoplasma, EBV, chlamydia and whatever blood and bowel tests you doctor can think of for infection. Look specifically for chlamydia Pn and mycoplasma Pn. You might be able to get a test for NMDA antibodies but most people don't even know what that is.

I don't follow why your Neurologist asked the cognitive question and left it at that. Was it a junior person? Often they are intimidated by their seniors.

Someone should have done an MRI based on what you have said.


If you are lucky, you may be able to get a fasting amino acid test which will show if you are depleted in any. That can be indicative of infection or dietary problems.

Regards,

[rluck9974]

You want me to get tested for a sexually transmitted disease after I go to a massage parlor. Lol. Also, a physiatrist can usually determine where spasticity is located in your body, that's kinda of the point. I think my symptoms trump your bizarre instructions.