I just wanted to say, first, Angela, your story sounds just like I wrote it. Its absolutely amazing, except when mine first started, I had extreme nausea that lasted 3 months. When they did bloodwork at that time, the only thing that was not normal was the neutrophils also, they were elevated.
This has been going on for 6 years next month. Its very annoying,. Along with these feelings though I never have had numbness, or weakness in my body. Just some of the strangest feelings that are so hard to describe.
I went to a neuro, she also prescribed Metanx. Even though my B-12 level was never checked. I felt good the first couple weeks, I though I found somekind of miracle drug. Then it all came back full force. She told me to take 2 instead of one a day. Well, it was absoulutely awful. I still after being off them for almost a month have burning pains all over my body. When they first started they were located under my bra strap. I thought that I was getting shingles. Then the next day they started everywhere, so then I knew it couldn't be shingles.
I had a brain MRI last April, it was normal. C-spine showed bulging disk Lumbar MRI normal. My neuro doesn't want to do the LP because of my MRI were all normal, and feels that its not conclusive.
I feel the Metanx made me worse, I never had pain with my parathesia, until I started the Metanx, the painful parathesia started after about 2 months of the drug.
I'm sure that someone else will come along and tell you to check Lyme (go to LLMD), I did, had the "good" lab check my blood, and nothing. I also have had my thyroid levels checked, hormone, sed rate, ANA, IPEP/SPEP, antiocardiphoslid (spelling), cholesterol, EBV, syphllis, and I'm probably forgetting some too.
I'm sure that Bobb will come along and chat with you, he's very helpful. I did speak to him the other day regarding the Metanx, look at the Doctor-to-Patient Neurology forum, under facial tingling because of bulging C-6.
MS does scare me also, and it may end up being that for me, my gram was diagnosed at age 60 with MS, she did very well, she lived until 79, and never was in a wheelchair. She died because of complications from heart surgery.
I miss her so much.
Take care Angela, and please let me know if you ever get any answers, we are so much alike its unreal. Thanks, Jennifer
Hi. remember me, ahoskm. I wrote yu telling you about the water sensations running all over my body, from scalp, face to the bottoms of my feet. Feet vibrating, etc. I just came back from mayo clinic in rochester, MN to day, I was finally after 4 yrs. 2 months later diagnosed with small fiber sensory neuropathy. Probably 4 yrs. 2 months to late, because all the other doctors thought it was all in my head, delusional!!!! Nice, hey. The neurologist at mayo consulted with a sensory specialist there and that is what they came up with. They put me on cymbalta, 20 mg for one week, then 40 mg. for another week then up to 60 mg daily. They said it could take a very loooooooong time for this to possibly go away. Doctor said that even after such a long time it could still possibly go away. Who knows. They did another sweat test, showed i did not sweat on some areas of my face and that is where mine started. They also did sensory test, which showed that when the heat was on my right foot, which was the first foot to be affected, i did not respond to the heat as a normal person would feel the intensity of the heat applied. I had 5 brain mri in the past showed 6 lesions, all non-specific, all the neurologist said NOT ms, even an MS specialist here at home. The doctor thinks mine was immune related, had the explosive diarrhea, was in the dominican republic when this all started. I don't feel verry much hope because it has been so long. I had IV igg infusions twice, at 5 days in a row and also plasmapheresis., as the doctors up at mayo said I had the "Big guns"/ so if i had the big guns and they did not work what makes them think a pill will help after 4yrs. I thought that the Lyrcia was helping you? has your symptoms gotten worse? My sister or anybody in my family really does not understand that something like this can drive a person nuts. my sister told me to get off the pitty pot. and stop feeling sorry for myself. I really wish she could have this , just even for 2 yrs. and see how this feels all over your entire body. People can't say anything unless they have walked in your shoes. Please let me know what is going on with you. Laaz
No, it doesn't sound like MS especially with nprmal MR withGD.
" feelings of hot water pouring down my thigh, twitching randomly all over" is this with bending the neck ? and is it better after normalizing the B12?
What about your physical examination? did you have any eye movement issues? proximal muscle weakness? sensory loss, reduced reflexes, abnormal tandom gait, or Romberg?
Do you smoke? any constitutional symptomes? any risk of a contaminated needle *****?
"Serum labs negative except for elevated neutrophils at 84 " do u mean 84% ..what is the total WBC? some books say its normal up to 80%, may go up during stress, menstual time esp if no left shift (band > than 6 %) what about the lymphocytes?
"B-12 low normal at 301"? is abnormal in a young person, because serum B12 levels do not strictly correlate with physiologic deficiency because we are measuring total serum B12 which could be high e.g in liver problems,or a viral infection.. while the important is the bound portion to transcobalamin II ..so in any case of a borderline level we recommend doing serum homocysteine and methylmalonic acid levels (both need the bound B12 for its metabolism)
Methylmalonic acid is more sensitive than homocysteine
If it was somehow related to the low normal B-12, how long till the symptoms get better on the supplementation?
The exact mechanism of neurologic damage is still obscure. a hypothesis that impaired methionine synthesis (from Homocystein) leads to abnormal myelination which means you need time to reform the myeline which starts in 2-3 weeks and should finish in several months
But, the real Q is why you developed a low B12? our daily requirement is only few microgram and the food supply (the typical american food, meat or dairy products) 10 to 20 times what we need. and the liver store last us for up to 3-4 years....unless you have what is called the DIET COBALAMIN (B12)MALABSORPTION especially your level picked up fast on the low oral dose
" Serum labs negative "? did you have Vitamin E level, thyroid function test, SSA or SSB antibodies, ANA, VDRL or RPR, and Copper level
" Lumbar puncture normal" could you specify what was done?
Could it be a small fiber neuropathy that is not showing up on the EMG? yes and even in large fiber could be missed if it was proximal to the sensory cell body (the sensory neuron are located outside the spine) for example in radiculopathy the sensory stays normal because the root is before the cell ganglion, or in acute trauma the sensory takes time to be affected.
What was the F wave latency on the NCS?
Could it be a small fiber neuropathy ? No, because
1- small fibers supply the autonomic system (light headness on assuming the upright position, bladder, bowel issues , constipation, sweatin...ext)
2- Small fibers present with jabbing and burning pain, while large fiber present with paresthesia (pins & needles)
Dr. perscribed Mentex (high b-12,b-6 and folate) and Lyrica 50mg TID
THE ONLY THING I DISAGREE WITH IS B6 BECAUSE IT EXCESS CAUSE PARESTHESIA, YOU ARE BETTER OF WITH B12 TABS 1mg daily
If the MMA or the Homocysteine are high then I prefer the old days of therapy (1mg IM every 2 wks for one month) and search for a possible pernicious anemia==> if present then 1mg IM every 3 months (under your doctor's supervision and check the potassium level before)
yes I remember you, I was wondering how your visit with the clinic went! I am glad you got a diagnosis! The Lyrica has helped, but my symptoms continue and now I have scalp tingling and tongue tingling and I am sick of this whole thing!!!!! I go back to the Neuro on the 19th and he said he would repeat the MRI if no improvement but I feel like I am just supposed to sit around and let this thing continue to destroy my body. Maybe I am too impatient, maybe it is healing and I just want it to be over with. It has been 3 months. Let me know how the Cymbalta is working, I think I am ready for an antidepressant myself. I have periods of the day when I just start crying because I can't deal with this anymore. I just want something to show up on a test so that I can have validation!!!!!
Bobb has been so great in helping. I hope he has an idea for me.
Write me back and tell me how you are doing.
sorry to hear the symptoms have spread. It took my symptoms upper body the first 2 yrs. the beginning of the second two yrs. it took over the rest of my body.scalp to soles of my feet. Very terrible thing we have. i hope you can find out and not take over 4 yrs. like mine did. I really don't have much hope though recovering from this, i feel that it has been to long of time. Did any doctor mention small fiber sensory neuropathy - my doctor said immune mediated was the start of this. Even thougth my antibodies and everything was negative., my trapase(speling) was at 12 and 11 is the high end. Doctor is still waiting for 24 urine - something- histimine levels. Said i should call mayo on monday. The cymbalta is not for depression it is for the nerves from the neuropathy. please keep in touch and let me know what is going on. laaz
Thank you for taking so much time to answer me. Here are the answers to your questions:
I didn't mention this prior because my neurologist dismissed it, but fot the 3 months prior to the onset of my symptoms I was having a lot of stomach aches and gerd and was popping tagamet left and right and finally 2 weeks before my symptoms I switched to Prilosec. I finished the prilosec and one day later my symptoms started in the left hand. 1 day later I had 2 days of "frightening diarreah" with what certainly seemed like autonomic involvement because there was no nausea or vomiting just explosive diarreah and horrific drenching sweats. Then the tingling and paresthesias continued to spread to right hand, arm right leg and foot and left leg and foot. I thought maybe my "low normal" B-12 level could have been induced by me irradicating my stomach acid with too much acid reducers. My homosystine and MMA levels were not checked until 6 weeks later when he rechecked my B-12 after I had been supplementing with over the counter B-12 not the Mentanex. MMA and Homosystine normal, B-12 now 1300's. I also had night sweats for the first 6 weeks of this. Everynight.
1. I do not have L'hemittes sign. The hot water pouring down my leg occurs randomly or when cool air hits the thigh. I get these "hot spots" on my legs, abd and back.
2. Some of the older inital symptoms are "better", my toes and tips of fingers are not as numb but feel "sensitive" like they are recovering from a burn. I have been on the Mentenax for 3 weeks.
3. My eyes have felt "jumpy" on and off but the neuro says "normal on exam". I have also had scalp tingling and tongue and lip tingling/tremoring.
4.My arms and legs have intermittent "weak and heavy" feelings, but I have not lost strength. I have probably 10-20 random twitches a day ( rib cage, leg, arm, hand, etc... they don't last long (just a quick twitch) .
5. i have felt numbness on my legs and arms, but like they were just wearing extra clothes, not a "dead numb" feeling like when your foot falls asleep. This turns "on and off"
6. My reflexs were decribed as "brisk", no loss of reflexes. He even said they seemed a little hyperactive but that could be my normal.
7.My Romberg was normal, Babinski normal.
8. It feels weird when I walk, like I am not getting all the information from my joints, skin, muscles, but I am not having difficulty walking. I can do toe to toe and jump up and down on one foot.
9. Never smoked, drink one drink a week (if that) and I have now given up diet coke and caffiene altogether.
10. WBC 7.6, elevated Neutrophils at 84%, Lymphcytes down at 12%.
11.Thyroid- normal. Sed Rate 1, VDRL-neg, did not get tested for Vit E or copper.
12. Right Median Nerve F wave 25.25
Right Ulnar Nerve F wave 25.58
Right Peroneal nerve F wave 43.00
Right Tibial Nerve F wave 48.50
R. Vastus Lat, R. Biceps,R. Gastroc Med. H, R Tibialis Ant, R. Gluteus Med, all normal on the EMG.
13.Lumbar puncture: No WBC, Protein 24, No ogoclonial bands, IGG index normal
Basically according to the Neuro he has no idea what this is, could be viral, but on paper I look great. The problem is that something is really wrong because I continue to have all these symptoms.
Do you think I could have induced a B-12 defficiency? Do you think the Tagamet caused the Neuropathy? Are there other systemic illnesses that present this way that I could be missing? Someone mentioned Celiac disease to me. I have not had a needle stick at work but believe me I have been questioning what I might have been exposed to!
Thank you again for your time. You are truely an angel.
Thanks for the nice words,
Looking at these normal results including the physical examination, which are all against a large fiber demyelination seen in B12, copper or even vitamine E.... the extra peace of information of gasstric upset and GERD which could be seen in early autonomic dysfunction (small fibers) and the spontaneous burning sensations (small fibers too)
BACK TO YOUR Qs
1-Do you think I could have induced a B-12 defficiency? NO
2-Do you think the Tagamet caused the Neuropathy? if it was Tagamet induced it should have been cured by now or at least 80% less
Note : Lansoprazole (Prilosec) also somewhat blamed to cause peripheral neuropathy
3-Are there other systemic illnesses that present this way that I could be missing? yes the history of GERD would put us in a different direction as I mentioned
4-Someone mentioned Celiac disease to me? yes it could cause neuropathy, and myoclonus, myelopathy, and even dementia BUT 40% of patients with idiopathic peripheral neuropathy have antigliadin antibodies!! even if we order the test and came +ve , its not diagnostic!! but one thing against it is your EMG/ NCS is normal while in Celiac its axonal type of defectit ..you could start a gliadin free diet if you want and see
The differential at this point is early small fiber neuropathy , apart from DM,and Marked hypertriglyceridemia, THE REST WILL NEED A SPECIALISED CENTER TO DIAGNOSE
1-Diabetes mellitus : I know these days we do a fancy test of Hbg A1c or fructosamine , but I want you to ask for the old fasion test of glucose tolerance test!!! to me that is the only way to rule out DM!!!
2- Marked Hypertriglyceridemia
3-Amyloidosis (familial and acquired)
a nonmalignant plasma cell produce monoclonal light chain immunoglobulin, which is deposited in tissues as amyloid. A minority of patients have multiple myeloma.Peripheral neuropathy is the most common initial neurologic manifestation .The typical patient presents with painful dysesthesias of the distal legs. Arms become involved soon after
4- Porphyria you dont have the symptomes
5- HIV-related autonomic neuropathy : no risk factor
6- Fabry's disease
So I forgot a couple of your Q
Please would you be able to give me any info. about the tissue swelling, will that ever go away.? better to see a dermatologist specialized in autoimmune skin changes
What is the prognosis of immune small fiber sensory neuropathy? its all dependant on the causative...e.g a diabetic and hypertri G are much better if the causes got treated well
I wanted to type SORRY I missed a couple of questions
Hi. More than 4 yrs. ago I started with abnormal sensations -started on my face feeling of water running down face, scalp, neck as the years progressed it spread over my entire body. Chronic 24/7 post nasal drainage -nothing triggers it off it just runs constantly, sicca syndrome, swlling of skin tissues, skin texture changes. I was diagnosed with immune small fiber neuropathy. Doctor put me on Cymbalta. I had plasmaphoresis, 2 5 day trails of Iv Igg infusions in the past. the first dose 1 and half yrs. after it started did help but came back full force and spread over entire body. I was on 3600 mg. of neurontin 1 and a half yrs. after it started. Question--after the big guns as they say - infusions and plasmaphoresis, how would the cymbalta help now? Why the skin swelling? of all skin tissues? If immune mediated will the sicca syndrome ever go away and what about the chronic rhinitis along with this- would that ever go away in time? I really feel that this is hopeless as it has been over 4 yrs. now never stops all my symptoms. My veins appear to be some what enlarged on my hand, arms , feet as well. I had explosive diarrhea to begin with, did not feel ill before, then pow, 4 times explosive diarrhea. I was in the Dominican Republic at the time. Please would you be able to give me any info. about the tissue swelling, will that ever go away.? What is the prognosis of immune small fiber sensory neuropathy- i forgot to mention the sensory part in the beginning of my letter. Please any in put would be greatly appreciated. Laaz
From your description its clear that you are talking about a primary sicca syndrom!! I will try to simplify what the Sicca syndrom is and you should expect from any therapy
In the last 1.5 year there was a thorough review in the Lancet (a journal) by FOX about the pathogenesis of sicaa syndrome and said "The exact mechanisms are still unknown" which means we are far from being able to cure it BUT we know that
1- the prominent immun system alterations are B-cell hyperreactivity (the cells responsible to produce antibodies to fight germs) which lead to production of autoantibodies (directed against our own body instead of forighn invaders)
2-The reason why number one above happened, so far believed, is multi-factorial environmental and genetic ( we think environmental factors activate glandular endothelial or epithelial cells, triggering inflammation in individuals with a genetic predisposition) (HLA DR), but how and what ? is still under research.
3-There are also alterations of cellular immunity where T-lymphocytes
-infiltrate salivary and lachrymal glands (leads to dry eyes
-And releases cytokines (chemicals) prevent so many other organs from
doing their jobs
I hope this is simple to understand?
So any treatement either the Neurontin or cymbalta are for symptomatic therapy (the nerve is contineusly irritated and hurting you but the drugs just take the symptomes away so you could live normal till the time where reseach reach a way to attack the cause of the disease)
And the big guns also not of that different , except they are more expensive
1- IVIG will temporarily neutralize the auto anti bodies
2- Plasmaphoresis will temporarilly take them out , but your body will replace them in both cases!!
Thank you very much for the info. I just don't understand how the immune mediated small fiber sensory neuropathy would affect my skin tissues. My skin tissues look and feel like there is slight swelling under skin tissues, my finger swell also. I also get alot of creases and dents in my skin all over my body from clothes. My undereyes are very swollen. I was also diagnosed with chronic rhinitis, meiobian gland dysfunction. Doctor of neurology said thatthe nerves wrap around the collagen and that would be the cause of the swelling? Is this true? Will this body swelling ever go away? I can't stand clothes or anything touching my skin. My veins appear appear larger in some areas as well. What would cause this? Doctor said he has seen this type of neuropathy go away after a looooong time. Did you ever hear of this type of neuropathy and swelling ever go away? I am so miserable being that my whole body is involved. I think the worst part is the face and legs, feet. What type of doctor would I go see for immune mediated small fiber sensory neuropathy? Neurologist, immunologist? Rheumatologist? Please, any help or info would be greatly appreciated Thanks again Laaz
Hi I posted you some more questions on 4-2-07 - Pleases look back I really donn't think all entire body skin tissues woud swell from an immune mediated small fiber sensory neuropathy- do you. Sorry for so many question but it has been over 4 yrs. now and I can't stand my body anymore. I feel the reason i can't stand the clothes or anything touching my skin is from the swelling under my skin tissues. Please reply to my questions from 4-2 and 4-3 I would greatly appreaciate it. Thank you Laaz
Sorry Laaz, I may not be able to answer these questions,because I never followed up the cases of Sicca S or Small FN, even after searching the midline I could not answer them , because all thes are clinical stuff,
Except that the small fibers in the nerves are targeted by the sicca as well as the other part of your body.
About the treatement and resolution of these signs, you will much better off having an opinion of a Rheumatologist, and Neurologist who is specialized in the peripheral nervous system, and arrange a follow up with a dermatologist (how far did the mayo clinic neurologist went with you?),