[antonina]

Two weeks ago I saw a well respected rheumy who says I do not have any autoimmune diseases (at least those which show up on blood tests & examination) which can explain my symptoms. He ruled out Celiac & FMS.
He also said that FMS would not present w/ severe leg weakness

Here are some of my major symptoms:

1) intense leg weakness requiring the use of a walker
1(a) intense leg pain from thighs to feet.
2) balance is off...a slight bump can knock me into counters, chairs, etc.
3) numb feet & calves
4) burning feet, esp. @ night
5) fatigue
6) depression...don't want to leave the house, lie around on couch most of day surfing the web
7) NO reflexes @ ankles, knees
8) dry eyes & nasal passages
9) back pain when standing more than 5-10 minutes
10)muscle stiffness & aches in legs, esp. in calves

As soon as I mention having had chemo 10 years ago, most neuros say "PN."

But whatever it is, it is worsening. I would like to have a new doc look at me without reaching the instant conclusion that I have PN. I tried Lyrica for about 7 weeks but although it helped with the stiffness, foot numbness & balance, I could not tolerate the s/e, especially the mucus membrane dryness. And, most importantly, it did not help the weakness & inability to walk unaided.

I had a laminectomy in 1974 for a herniated disk. I've had MRIs, EMGs, NCSs...
you name it. The last MRI, done about 4 years ago, showed some stenosis & "degenerative disk disease." But no doc ever concluded that the stenosis was bad enough to cause my sx. My own suspicion is that maybe the stenosis/disk stuff contributes a lot to my disability and that what's going on is not strictly PN.

I am asking for an MRI when I see the pain doc in a few weeks. Maybe there'll be some changes which will explain all these sx.

I also plan to see a new Neuro here in NYC before I make a trip to Johns Hopkins' neuro dept.

[mrsD]

Getting another MRI is a good idea. Things may have changed.

You can ask for some testing for hereditary neuropathies like CMT.

I don't recall if you had B12 or Vit D testing? I apologize if you have answered that question already.

PNs don't typically cause motor problems. Not in the beginning at least. They can progress to motor issues with time, though.

One has to scan his/her environment, to see if there is some toxin you are consuming, some drug that is causing this, etc.
Food intolerances, like gluten are also culprits.

I do know how you feel, because I became somewhat housebound for a time when I injured my leg. It has taken PT and some time to get back to usual activities, but I never did return to work, I chose to retire early.

[antonina]

The latest B12 result in June was in the low 400's so I've been much more religious about taking it every day. I take 50,000 IU of Vitamin D weekly so altho I didn't have a recent test for it, I assume it's in a good range.

I'm definitely going to schedule an MRI in the next couple of weeks. As for CMT, I will ask for a test, although I wonder if I could have it given my advanced age (remember, I'm on Medicare). I thought CMT is primarily hereditary and if so, wouldn't it have shown up before middle/old age?

The chemo, which ended in 1999, was definitely the catalyst for the disability. But I firmly believe that there is more than PN involved. My heartfelt wish is to have a complete workup @ Mayo but as I mentioned in earlier posts, they felt they could not offer me anything of value since I've had this for more than 10 years.

I am in the process of trying to get an app't w/ a neuro whose reputation is first- rate. He is supposed to call me today to evaluate if he's the right doc for my sx. (I guess he can pick & choose lucky patients).

Yesterday I spoke w/ a Johns Hopkins intake person. She emailed me what JH requires in terms of records, written reports, etc. Doesn't sound too onerous. If I don't get anywhere with neuros here, I am psyched to be seen there.

[nide44]

My neuro is Hopkins' dept head.
I have only good things to say about
my Dx & treatment there.

[antonina]

Originally Posted by nide44

My neuro is Hopkins' dept head.
I have only good things to say about
my Dx & treatment there.

I think you pm'd me his name...Dr. Griffin?

[Kitt]

Originally Posted by antonina

The latest B12 result in June was in the low 400's so I've been much more religious about taking it every day. I take 50,000 IU of Vitamin D weekly so altho I didn't have a recent test for it, I assume it's in a good range.

I'm definitely going to schedule an MRI in the next couple of weeks. As for CMT, I will ask for a test, although I wonder if I could have it given my advanced age (remember, I'm on Medicare). I thought CMT is primarily hereditary and if so, wouldn't it have shown up before middle/old age?

The chemo, which ended in 1999, was definitely the catalyst for the disability. But I firmly believe that there is more than PN involved. My heartfelt wish is to have a complete workup @ Mayo but as I mentioned in earlier posts, they felt they could not offer me anything of value since I've had this for more than 10 years.

I am in the process of trying to get an app't w/ a neuro whose reputation is first- rate. He is supposed to call me today to evaluate if he's the right doc for my sx. (I guess he can pick & choose lucky patients).

Yesterday I spoke w/ a Johns Hopkins intake person. She emailed me what JH requires in terms of records, written reports, etc. Doesn't sound too onerous. If I don't get anywhere with neuros here, I am psyched to be seen there.

Yes, CMT aka Hereditary Motor Sensory Neuropathy (HMSN) is hereditary. There are many types of it and they are finding more all the time.

Symptoms can become evident when you are young, old, or in-between. Or they may never be that evident but you can still pass it on. There are "rare" mutations (spontaneous) but this is rare.

There are 22 + types of CMT that they can now test for. There are 50 types identified so far and there is no end in sight. If you do have testing done and it shows that you do not have CMT (at least for the types that they can now test for) does not mean that you do not have it.

Testing is very expensive if you have to have the whole panel of tests done. I believe Medicare does pay for the testing.

As far as chemotherapy, Vinicristine is one that a CMTer should never have. It can raise havoc. Even people in the general population can have big time trouble with it. But, as I said, someone with CMT should never have Vinicristine.

Hope you find the answers.

[antonina]

Originally Posted by Kitt

Yes, CMT aka Hereditary Motor Sensory Neuropathy (HMSN) is hereditary. There are many types of it and they are finding more all the time.

Symptoms can become evident when you are young, old, or in-between. Or they may never be that evident but you can still pass it on. There are "rare" mutations (spontaneous) but this is rare.

There are 22 + types of CMT that they can now test for. There are 50 types identified so far and there is no end in sight. If you do have testing done and it shows that you do not have CMT (at least for the types that they can now test for) does not mean that you do not have it.

Testing is very expensive if you have to have the whole panel of tests done. I believe Medicare does pay for the testing.

As far as chemotherapy, Vinicristine is one that a CMTer should never have. It can raise havoc. Even people in the general population can have big time trouble with it. But, as I said, someone with CMT should never have Vinicristine.

Hope you find the answers.

Kitt,

Thanks so much for the insight into CMT. I will put this first on the list of neuro tests to have. Not one of the many neuros I've seen ever suggested testing for it.

Thank God I didn't have Vincristine. I had taxol & carboplatin but the taxol was so toxic, I had to stop after only 5 treatments (supposed to have 6) since I ended up in a wheelchair after the 3rd or 4th dose.

Thanks again for your help and good wishes.

[mrsD]

If you had PN with chemo.... that suggests mito damage.

The supplements for mito...are:
CoQ-10
r-lipoic acid
acetyl carnitine.

They are best done before, during, and after the chemo. But they are worth a try, years later. They will cost you however, and not be covered on Medicare.

CNS Drugs. 2007;21 Suppl 1:39-43; discussion 45-6.Links
Acetyl-L-carnitine for the treatment of chemotherapy-induced peripheral neuropathy: a short review.
De Grandis D.

Divisione di Neurologia, Ospedale Civile di Rovigo, Rovigo, Italy. ddegrandis@iol.it

Peripheral neurotoxicity is a major complication associated with the use of chemotherapeutic agents such as platinum compounds, taxanes and vinca alkaloids. The neurotoxicity of chemotherapy depends not only on the anticancer agent(s) used, the cumulative dose and the delivery method, but also on the capacity of the nerve to cope with the nerve-damaging process. The sensory and motor symptoms and signs of neurotoxicity are disabling, and have a significant impact on the quality of life of cancer patients. Moreover, the risk of cumulative toxicity may limit the use of highly effective chemotherapeutic agents. Therefore, prophylaxis and treatment of peripheral neurotoxicity secondary to chemotherapy are major clinical issues. Acetyl-L-carnitine (ALC), the acetyl ester of L-carnitine, plays an essential role in intermediary metabolism. Some of the properties exhibited by ALC include neuroprotective and neurotrophic actions, antioxidant activity, positive actions on mitochondrial metabolism, and stabilisation of intracellular membranes. ALC has demonstrated efficacy and high tolerability in the treatment of neuropathies of various aetiologies, including chemotherapy-induced peripheral neuropathy (CIPN). In several experimental settings, the prophylactic administration of ALC prevented the occurrence of peripheral neurotoxicity commonly induced by chemotherapeutic agents. In animal models of CIPN, ALC administration promoted the recovery of nerve conduction velocity, restored the mechanical nociceptive threshold, and induced analgesia by up-regulating the expression of type-2 metabotropic glutamate receptors in dorsal root ganglia. These results, plus the favourable safety profile of ALC in neuropathies of other aetiologies, have led to the effects of ALC on CIPN being investigated in cancer patients. Preliminary results have confirmed the reasonably good tolerability profile and the efficacy of ALC on CIPN. The present studies support the use of ALC in cancer patients with persisting neurotoxicity induced by paclitaxel or cisplatin treatment.

PMID: 17696592 [PubMed - indexed for MEDLINE]

from http://www.ncbi.nlm.nih.gov/pubmed/17696592

The other two mito supports, are being shown helpful in aging patients with mito damage.

[Kitt]

Originally Posted by antonina

Kitt,

Thanks so much for the insight into CMT. I will put this first on the list of neuro tests to have. Not one of the many neuros I've seen ever suggested testing for it.

Thank God I didn't have Vincristine. I had taxol & carboplatin but the taxol was so toxic, I had to stop after only 5 treatments (supposed to have 6) since I ended up in a wheelchair after the 3rd or 4th dose.

Thanks again for your help and good wishes.

Taxol is another one that isn't good for a CMTer. But is is not as bad as Vinicristine. Although it isn't great. These are things a CMTer should not have and there is nothing that we could take before, during, or after to make it better. Take care.

[antonina]

Originally Posted by antonina

The latest B12 result in June was in the low 400's so I've been much more religious about taking it every day. I take 50,000 IU of Vitamin D weekly so altho I didn't have a recent test for it, I assume it's in a good range.

I'm definitely going to schedule an MRI in the next couple of weeks. As for CMT, I will ask for a test, although I wonder if I could have it given my advanced age (remember, I'm on Medicare). I thought CMT is primarily hereditary and if so, wouldn't it have shown up before middle/old age?

The chemo, which ended in 1999, was definitely the catalyst for the disability. But I firmly believe that there is more than PN involved. My heartfelt wish is to have a complete workup @ Mayo but as I mentioned in earlier posts, they felt they could not offer me anything of value since I've had this for more than 10 years.

I am in the process of trying to get an app't w/ a neuro whose reputation is first- rate. He is supposed to call me today to evaluate if he's the right doc for my sx. (I guess he can pick & choose lucky patients).

Yesterday I spoke w/ a Johns Hopkins intake person. She emailed me what JH requires in terms of records, written reports, etc. Doesn't sound too onerous. If I don't get anywhere with neuros here, I am psyched to be seen there.

As for toxins, it's possible there are environmental things going on but I can't think of any offhand. I should look @ Liza Jane's chart for toxin testing. I can also try a gluten-free trial run since altho the rheumy said no Celiac, that doesn't rule out gluten intolerance and boy, is my diet gluten-loaded!!