[busymomof5]

I thought I'd tip-toe in and post an introduction.

Up until 5 years ago, I was a busy, healthy mom of 4, expecting her fifth child. I was then diagnosed with a mediastinal non-hodgkins lymphoma during pregnancy. I underwent 6 rounds of chemo, delivered the baby, had radiation and made the attempt to move on with my life. I thought the worst was behind me and that any neuropathy in my legs that I had from the vincristine in the chemotherapy would ultimately improve. Vincristine associated neuropathy usually improves and often completely resolves in the first year after treatment.

Instead, my neuropathy continued to progress.

What started in the feet and calves as cramping and burning continued to intensify. A year later, I started experiencing coldness in my left index finger. It can get cold as an ice cube out of the blue. I didn't associate it with neuropathy until I started experiencing burning/tingling in my hands (glove distribution).

I still wasn't terribly concerned ... and I was busy with 5 children.

1 year ago, I suffered attacks of what was later diagnosed as trigeminal neuralgia. I had never heard of this and was completely shocked. I have a bilateral case (side switching but never at the same time) and diagnosis and tx occurred after I was admitted one night to a neuro floor. It was horrible.

Still, I figured that I had *bad luck* and that treatment with tegretol would work for it (it does for the most part when I am consistent). At this point, I began experiencing burning sensations, electric shock sensations on my tongue. I'm not kidding. I thought I was going crazy. I also began experiencing intense bitter taste and lost the ability to taste certain things, like cherry in diet cherry coke. It's totally and completely without a doubt the weirdest thing I have ever experienced and I feel like a freak for talking about it. I just *know* people think I'm nuts! This problem is not resolved by the tegretol and is only helped by using the Mayo mixture and at times a lidocaine gel on my tongue. I saw ENT and they indicated that the mucosa on my tongue showed evidence of change/damage and that it was consistent with peripheral neuropathy.

Then ... came the ears ... bilateral eustachian tube dysfunction that either is or is not related ... no one can decide ... but it is coincidental that it happens at times of increased tongue/facial symptoms. Still, I'm willing to think that it is unrelated.

Now the burning in my feet/calves has progressed up my legs and arms.... and ...well ... ummm ... into my ... groin region.

My EMG only showed large fiber involvement in my calves (which could be consistent with damage from the vincristine)...all of my bloodwork was normal with the exception of low B12 which was not too low, but has been corrected with monthly injections.

I'm 40 and I feel 70. I used to be vibrant, outgoing and busy with my kids and now I ache, have burning limbs, feel tired and I ... frankly ... I feel like I'm going nuts. I feel like every doctor I see thinks I'm nuts. I feel so upset that no one has a good explanation for all of this.

I saw a new neurologist this morning who is going to do a repeat EMG since my symptoms are worse and it has been a year ... and who will be doing punch biopsies. He says he has "never heard" of anyone have any combination of symptoms like this.

I just feel so embarrassed and frustrated. I want it all to go away. I have tried anti-depressants, therapy ... and am now on neurontin and tegretol. The neurontin is good for the neuropathy if I am regular about it, but I find that it affects my ability to concentrate ... and I am busy with my children. I really can't afford to not be at my best for them.

I guess ... what I need is to either hear a few people say "I've been where you are, don't feel like a complete loser" or to just be sympathetic. There is really no one in my life that I can talk with about this. My husband just worries and we don't really have a good support network as far as family goes.

Thanks for hearing me out!

Kris

[zorro1]

Hi kris,
P/N affects every part of our lives right to the core. The psychological effect of having a large family would make it much more difficult. How do you even start to explain your symptoms? then there's the guilt of being grumpy and withdrawn or a stick in the mud when every one around you just wants to have a good time. The pressure of trying to be "normal" can wear you out quickly.

We all know what your going through and its why we come here, where every single person knows what zap and zing and burn, actually really means.

In time you mill learn not talk about your symptoms and look for support in forums. I avoided my mother where possible since all her talk was about her fibro and P/n/ mild parkinsons. I seriously regret that now as she depressed me so much with the non stop pain talk. Well I guess karma got me, as soon as she passed from cancer I got P/N.

good luck in your journey and you can always come here for support any time.

[malawigirl08]

Originally Posted by busymomof5

I thought I'd tip-toe in and post an introduction.

Up until 5 years ago, I was a busy, healthy mom of 4, expecting her fifth child. I was then diagnosed with a mediastinal non-hodgkins lymphoma during pregnancy. I underwent 6 rounds of chemo, delivered the baby, had radiation and made the attempt to move on with my life. I thought the worst was behind me and that any neuropathy in my legs that I had from the vincristine in the chemotherapy would ultimately improve. Vincristine associated neuropathy usually improves and often completely resolves in the first year after treatment.

Instead, my neuropathy continued to progress.

What started in the feet and calves as cramping and burning continued to intensify. A year later, I started experiencing coldness in my left index finger. It can get cold as an ice cube out of the blue. I didn't associate it with neuropathy until I started experiencing burning/tingling in my hands (glove distribution).

I still wasn't terribly concerned ... and I was busy with 5 children.

1 year ago, I suffered attacks of what was later diagnosed as trigeminal neuralgia. I had never heard of this and was completely shocked. I have a bilateral case (side switching but never at the same time) and diagnosis and tx occurred after I was admitted one night to a neuro floor. It was horrible.

Still, I figured that I had *bad luck* and that treatment with tegretol would work for it (it does for the most part when I am consistent). At this point, I began experiencing burning sensations, electric shock sensations on my tongue. I'm not kidding. I thought I was going crazy. I also began experiencing intense bitter taste and lost the ability to taste certain things, like cherry in diet cherry coke. It's totally and completely without a doubt the weirdest thing I have ever experienced and I feel like a freak for talking about it. I just *know* people think I'm nuts! This problem is not resolved by the tegretol and is only helped by using the Mayo mixture and at times a lidocaine gel on my tongue. I saw ENT and they indicated that the mucosa on my tongue showed evidence of change/damage and that it was consistent with peripheral neuropathy.

Then ... came the ears ... bilateral eustachian tube dysfunction that either is or is not related ... no one can decide ... but it is coincidental that it happens at times of increased tongue/facial symptoms. Still, I'm willing to think that it is unrelated.

Now the burning in my feet/calves has progressed up my legs and arms.... and ...well ... ummm ... into my ... groin region.

My EMG only showed large fiber involvement in my calves (which could be consistent with damage from the vincristine)...all of my bloodwork was normal with the exception of low B12 which was not too low, but has been corrected with monthly injections.

I'm 40 and I feel 70. I used to be vibrant, outgoing and busy with my kids and now I ache, have burning limbs, feel tired and I ... frankly ... I feel like I'm going nuts. I feel like every doctor I see thinks I'm nuts. I feel so upset that no one has a good explanation for all of this.

I saw a new neurologist this morning who is going to do a repeat EMG since my symptoms are worse and it has been a year ... and who will be doing punch biopsies. He says he has "never heard" of anyone have any combination of symptoms like this.

I just feel so embarrassed and frustrated. I want it all to go away. I have tried anti-depressants, therapy ... and am now on neurontin and tegretol. The neurontin is good for the neuropathy if I am regular about it, but I find that it affects my ability to concentrate ... and I am busy with my children. I really can't afford to not be at my best for them.

I guess ... what I need is to either hear a few people say "I've been where you are, don't feel like a complete loser" or to just be sympathetic. There is really no one in my life that I can talk with about this. My husband just worries and we don't really have a good support network as far as family goes.

Thanks for hearing me out!

Kris

Hi Kris
Sorry to hear about your suffering, my dad had the exact same symptoms as you. He has passed away now but his PN took around 3yrs to get to the same stage as you. His docs said it was diabetic PN but I am not too sure as I now have PN in the legs and feet and suspect there is some genetic influence.
Good luck and share here often.

[daniella]

Hi I am sorry for all you face. First I give you credit and all the parents here who face pain but also raise a family. I have a hard time dealing with myself and can't even imagine the mental and physical impact raising a family has. To me you are not a looser but a strong women.
I am sorry about lack of family support. Do you mean with your husband or outside family? My outside family is not supportive but my mom is so I try to focus on that. If it is your husband can you do therapy together? Can you go to therapy as you stated you don't have someone to talk to about this? Sometimes just talking about the feelings and emotions can help. If you want an email buddy I am here too.
Have you been to a pain doctor? They may work better with you on meds or treatment to help with pain relief that won't leave you where you can't care for your family.
Hang in there and feel better

[glenntaj]

Certainly, chemotherapy can cause neuropathy--and it doesn't always improve markedly once the therapy regimen ceases. B12 deficiency can cause neuropathy (and I imagine if you have had B12 problems, having cancer and chemo would have exacerbated them--and you will probably need to supplement for life, and not just with periodic injections, but orally and every day). Cancer itself can cause neuropathy, and that also doesn't always go away entirely post-remission/control, especially with the blood cancers, as the rogue antibodies manufactured in many of these seem to cross react with many components of peripheral nerve, and the antibody titers may linger . . .

Sounds like you need a very comprehensive work-up from a neuropathy specialty practice, and to have such a place take all of this history in account for testing.

[mrsD]

Welcome to NeuroTalk:

Some supplements that help the mitochondria of cells have been used to reduce PN from chemo.

The major one is acetyl carnitine.

Others to add on would be CoQ-10 and r-lipoic acid.

If you search "chemo" on our search function at the top right of the page on the main index for PN, all the posts will come up including the PubMed articles.

Here is one to get you started:
http://neurotalk.psychcentral.com/post653568-5.html

Also having 5 children is very hard on women in general metabolically. Another nutrient you may be very low in is Vit D.
So please take Glenn's advice and have testing for both Vit B12 and Vit D. Bring your number results back here, if your doctor says "normal"...because low levels are outdated in U.S. as normal.

Also thyroid functions may be low after pregnancy and low thyroid can cause PN ..so having good testing for that is important too.

Pregnant women use alot of essential fatty acids like DHA to donate to the developing baby's brain and nervous system, and the mother may become very low as a result. DHA can be supplemented OTC, and a product exists for this called Expecta:

http://www.enfamil.com/app/iwp/enf10...natal3/ForMoms

This Omega-3 fat is in a couple of prenatal vitamins, that some informed doctors now give during pregnancy. But the vast majority of women do not receive them. DHA is in fish, and also made by your body from the essential fatty acid found in Flax.
If you did not consume foods with this added (we have smart foods around now) you would be deficient and your nervous system would suffer as a result.

[busymomof5]

Thanks so much for your feedback.

The thing is ... I feel so discounted even (and perhaps especially) by medical professionals. I have gotten the whole "oh, this was all so stressful for you ... maybe it's just depression" bullcrap so many times that I have started to feel like I'm losing it!

When I met with the neurologist on Friday, he reiterated that Chemotherapy related neuropathy goes away within a year and so it can't be that. When I told him that my oncologist suggested that sometimes there are rare occurrences of off-treatment worsening and that I have an appt. at a big U and their late-effects clinic for evaluation he looked at me skeptically.

He said that the sensory neuropathy in my hands/feet was mild ... and frankly, I didn't even know that I was experiencing a difference in cold perception (for example) ... that isn't even my complaint. It is the burning and pain ... and the facial/tongue issues.

He told me point blank that he had "never in 30 years heard of a patient with this clustering of symptoms". Another thing he told me is that neuropathy does NOT cause fatigue and that my fatigue has to be from something else. Well, OK.

He did, however, suggest small fiber neuropathy and we will be doing a repeat EMG and punch biopsy.

I felt ok about the appt. until later. My husband is also a physician and the two of them work together. He actually called my husband later and asked if it could be psychological. My husband told him that we have been married 17 years and he knows me and ... no ... he doesn't feel it is.

This just makes me feel irate. I feel completely blamed for my symptoms. I wasn't depressed before all of this started, but I do feel depressed now.

As far as my test results:

I had a normal MRI of the head. I have a slight bulging disk in my thoracic spine that was evaluated by a neurosurgeon as being non-surgical.

My EMG was normal with the exception of my lower legs (it was felt that this change could be consistent with a vincristine associated neuropathy).

My B12 was 161 a year ago. It is now in the 300 range with monthly injections. My vitamin D was low and one measure was "undetectable". I was told the D was related to living in the north. The neurologist that I saw last week indicated that 161 is "not low" for B12. My internist a year ago had be on a week of daily injections and then monthly ... whatever ...

I get so tired of hearing so many different things. I'm also extremely frustrated by the attitude of medical professionals. I feel so isolated.

Thanks for hearing me out.

Kris

[mrsD]

Your doctor is very behind the times.

Read this website from American Family Physicians from 2003!

http://www.aafp.org/afp/2003/0301/p979.html

a level of 300 is not enough to replenish you from such a low number to start with.

Here is my B12 thread...
http://neurotalk.psychcentral.com/thread85103.html

I suggest oral 5mg a day of activated methyl form (probably your doctor doesn't know about it either ) on an empty stomach, and get retested in 3 months.
The link from AAFP has studies to show oral works. I believe it is far superior to injections, because you take it every day, and it is the active form (most injections are cyano form..synthetic and not bio active).

And don't let those patronizing doctors gang up on you! Obviously they don't keep up! On that same link I gave to the B12 thread is a link to Dr. Snow's B12 work.

http://archinte.ama-assn.org/cgi/con...ll/159/12/1289
Quote from the end of article:

As discussed above, patients with Cbl deficiency may have overt neurologic disease in the absence of hematologic findings. Patients with neurologic symptoms and signs and a normal complete blood cell count require a modified diagnostic approach because of several considerations. First, folate deficiency is an unlikely cause of neurologic disease. Second, the neurologic disease of Cbl deficiency may be irreversible if treatment is withheld or delayed; because Cbl therapy is nontoxic, the risk-benefit ratio favors treatment in questionable cases. Finally, an apparent response to therapy (or lack of response to therapy) is less definitive in ruling in or ruling out Cbl deficiency than is the serial measurement of abnormal initial hematologic parameters. Even in patients with a normal complete blood cell count, it may be worthwhile to monitor the MCV after treatment because a significant decline within the normal range provides additional evidence of Cbl deficiency.

An approach to the diagnosis of Cbl deficiency in patients with isolated neurologic findings is outlined in Figure 4. Relevant to the development of this algorithm is a study23 of 419 patients with Cbl deficiency, 12 of whom had serum Cbl levels greater than 148 pmol/L (200 pg/mL). All 12 had elevated levels of serum Hcy and serum MMA. Five patients with normal serum Cbl levels had neurologic disease, and 1 of the 5 had a level greater than 221 pmol/L (300 pg/mL). All 5 patients had a clinical neurologic response to Cbl therapy and normalization of metabolite levels.

Give that article to your doctor and husband if you must. Using oral B12 would put YOU in control...and it costs pennies a day.

In regards to your Vit D... if you are using the RX form 50,000u D2, be aware that this does not work well.

Here is a thread with medical videos on Vit D and how to get your results from D3, OTC... near the end of the thread is the newest information about D2 being 87% less useful than D3 for supplementing:

http://neurotalk.psychcentral.com/thread92116.html

Since you have already been tested, you can supplement yourself, and retest in 3 months. Vit D requires magnesium as a cofactor, so if you are low in that success with D3 may also be lower than you expect.
Dosing for D3 is approximately 1000IU D3 per 10 pts you need to increase.

[echoes long ago]

if that neurologist hasnt heard of that clustering of symptoms after 30 then it has to be because he isnt listening. There have been people on this board who have exactly those symptoms. as far as pn not causing fatigue, many of us are fatigued and its not psychologically based. pain itself causes disruption of sleep patterns it also causes fatigue because of the extra effort needed to move around while you are in pain. of course it takes a psychological toll but it is not psychologically induced. conversion disorder is a pretty discredited diagnosis in most of the world. as far as his talking to your husband about his psychological theory and not you, that would be the last straw for me. your neuro seems to be very uninformed on same very basic knowledge about PN and treatments. many of us have had to dump a neurologist or two along the road to diagnosis or treatment.

[busymomof5]

Thanks. He is actually neurological #3. The 2 before him went on extended maternity leaves. Sigh. It is hard because I have to start over. By not seeing the clustering of symptoms he was referring to trigeminal neuralgia, tongue and eustachian tubes coupled with the extremities. My dh clarified that he didn't want to hurt my feelings by asking me and that depression/anxiety can manifest themselves in somatic complaints. I still don't feel good about them talking behind my back, but it is par for the course being married to a doc. It stinks!

I am having a repeat EMG with punch biopsies next week along with a pelvic CT tomorrow to rule out a tumor as a cause of pudenda nerve neuropathy or some such nonsense. I'm fairly horrified by all of this but I imagine everything will come back normal (hopefully) and I'll just continue to look nutterbutter.

I know we don't know each other, but I could really use the support as I go through this process.

Thanks so much,

Kris