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I need a diagnostician (Where's Dr. House when you need him?)

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Unread 11-15-2012, 09:59 PM   #1
KristaQ
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Default I need a diagnostician (Where's Dr. House when you need him?)

Hi,

I'm Krista. I've had a subacute onset of peripheral neuropathy that began in July. I'm now on an intensive search for the cause of it but no answers yet. Here is the letter I wrote Oct 23rd 2012 to the neurologist that I saw on Nov 7th. Unfortunately since I saw him and told him I was getting better and didn't need any pain meds, I've been rapidly deteriorating. The parasthesia has crept up to above the knees and has also started in my hands.The burning and stinging in my feet and legs is getting very bad. I think I'm going to have to ask for some anticonvulsants which I have not as yet used (although I probably needed them for the cramps and fasciculations the first two months I had it but no one would give them to me. The cramps and fasciculations were almost completely gone when I saw the neurologist on Nov 7th but now my legs and arms are spontaneously cramping up sporadically all over the place. I've turned down having a CAT scan of my pelvis, abdomen and chest because it's too much radiation and I thought I was getting better. Now I'm changing my mind.
I also turned down an MRI of my brain due to my worries that this all started after a lot of unusually high exposure to electromagnetic fields from TMS and MST(see letter). But the facial symptoms are almost gone so that can wait.

Tests I've had which have all been normal:

Numerous liver and kidney function tests
CBC
Phosphorous, Magnesium, Calcium
TSH
Free T3
ESR
C3,C4
ANA
Rheumatoid Factor
C-Reactive Protein
Vitamin B12
Serum folate
Fasting Glucose
HbA!C
glucose tolerance test

Tests I'm getting results back for on Monday Nov 19th 2012:

Lyme Disease
Paraneoplastic Antibodies
Blood Protein Electrophoresis
ENA
Chest X-Ray

Tests I'm going for next week:

Mammogram, ultrasound of breasts
Ultrasound of pelvis and abdomen

The first neurologist I saw has diagnosed me with subacute development of axonal peripheral neuropathy, however, I really feel that it started as a sensorimotor neuropathy but the motor neurons were almost completely recovered before he saw me on Oct 4th. He only saw mild twitching and some cramping and discounted it as insignificant despite the fact that it had previously been very disabling to me and had only recently improved.

Here's the letter to the second neurologist I saw.

Hi,
I have an appointment with Dr. CXXXXXX on Nov 7th at 3pm and I would like to make sure I give him as complete an understanding of my illness and its development as possible to help him make an accurate diagnosis. So here it goes:

History of Symptom Development

I began a series of 14 Magnetic Seizure Therapy (MST) Treatments on June 12th 2012. They were 2 to 3 times per week with the last one on July 18th .
MST is an experimental treatment for severe treatment resistant depression. I was part of a clinical trial. It involves the use of an electromagnet to induce a small seizure in the Dorsal Lateral Prefrontal Cortex in the right hemisphere of the brain.. Its advantages are no disorientation after treatment and no cognitive impairment. I demonstrated these advantages with extensive ongoing testing during the trial. However, I seemed to be having some problems that other patients were not having. I was continually waking up before the neuromuscular agent, succinylcholine, had worn off, leaving me completely paralyzed and unable to breathe, but fully awake, aware and oriented. They kept lowering the dose of the succinylcholine until it was down to 10mg (practically nothing) and raising the dose of the anaesthetic, methohexital, and the waking paralysis was still happening (although not as badly or prolonged) . Also, I would not recover well afterward, with weakness lasting much longer than in other patients. The stretcher had to be brought to the exit door of the recovery room and then I was half carried to the recovery chairs because I could not walk very well. My knees would buckle under me. The significance of this is that much later on, I read that the use of succinylcholine is contraindicated in patients with neurological disorders because it can cause prolonged paralysis and weakness and it has also been known to uncover pre-existing, but as yet subclinical, neurological disorders, by aggravating them.

Around the 6th treatment of MST, I noticed I was getting many, many more involuntary jerking movements than I used to, at home, while resting or about to fall asleep. I didn’t think much of them. I thought they might be related to the treatment, but I knew that these were hypnic jerks that were supposed to be benign. (I didn’t know at the time that a sudden increase in them might not be so benign. I also began to get wild, psychedelic auras with my migraines (I get migraines a couple times a month), and the few strange déjà vu type of experiences I also had in between MST treatments. Then after the 13th treatment on July 16th, I noticed about 5 minutes after awakening, that I had twitching in my calf muscles. I didn’t think much of it at the time, because it didn’t hurt. I figured it would pass. Unfortunately, it did not. A few hours later, the twitching spread to all over my legs and a few hours after that I began to be in terrible pain. I was getting cramps when I walked as well. It felt like I had pulled every single muscle in both legs. And then the left side of my ribs started twitching and hurting as well. I took some pain killers which did little. Over the next two days, the twitching died down though and then stopped. I thought maybe it had been from lowering the succinylcholine too low and asked them to raise it back to 15mg. It was only later that they told me I had not had any excessive movement from the 10 mg. Raising the succs might have only made things worse. I went into the 14th treatment with the twitching gone but came out with it again! And it hasn’t stopped since, (although it has improved a lot, but slowly over the last 3 months). I stopped the MST treatments when the twitching and cramping would not go away. It was a continual, 24 hour a day thing, in the legs and left ribs. They interviewed me about exactly what happened and started testing me for possible causes of my symptoms.
About a week after I quit MST, I had motor threshold testing in preparation to go back to Transcranial Magnetic Stimulation (TMS), as it had helped to reduce, but not cure my depression in the summer and fall of 2011, previous to starting the MST. (I had volunteered for a clinical trial of Deep Transcranial Magnetic Stimulation in June of 2011. but I couldn’t tolerate it. It was too painful. I was given compassionate TMS for free as a result of this and I tolerated it. When it only worked partially, he recommended I try MST but there were ongoing delays in beginning the trial and I relapsed into severe depression between Dec 2011 and the beginning of the trial in June 2012. Wikipedia has an entry on TMS if you want to know what it is. Anyway, a day after the motor threshold testing, that I needed in order to go back to TMS, I developed twitching in my right arm. (During motor threshold testing, the left brain’s motor cortex is stimulated to cause the right thumb to twitch.) It became, and still is, the most consistently painful and severe location for symptoms. Naturally, it seemed like the threshold testing had brought on another symptom and I then refused to go back to TMS for fear that all these electromagnetic treatments were causing neuropathy in me. I really don’t know and maybe never will, whether that is, or is not, the case, but it certainly seemed that way at the time. I am however sure that you will never find these treatments listed as etiologies for neuropathy, no matter how hard you look. Well, actually, I read an article that they suspect exposure to the electrical fields of TENS to be a factor in the development of ALS in a lot of baseball players—not that I think I have ALS but they have drawn a connection like that.
To continue with the history, about 10 days after the fasciculation/cramps began, and a few days after they started in the right arm, I developed tingling in the feet and calves. It was at this point that I went to see my family physician. That was when she referred me to you. The tingling progressed to buzzing and then to very uncomfortable “pins and needles” feeling and then they went numb and then tingling and numb. The numbness became permanent, the other feelings varied from tingling, buzzing , pins and needles and occasionally a sense of heat or slight burning sometimes in the evening.

In mid-August the left side of my face began to twitch and about a day later parasthesia set in too. And my right arm began to have occasional slight bouts of twitching which it continues to do. It is slight and not painful though. Then in early October my left ear went numb and I began to hear ringing in it. I also felt sort of deaf. The numbness in the ear seems to have gone away recently though. My face continues to tingle, but the twitching has stopped. Also, the twitching and cramping in all areas, except my right arm, began to improve beginning of August and have been improving, slowly and steadily, ever since. It is aggravated by exercise though. I have only recently gotten back to moving around more as exercise was previously just too painful to bear. I was almost immobile for 3 months after it started, because every time I did anything the twitching and cramping would go crazy. That doesn’t seem to happen now. The motor neurons are definitely settling down, the sensory neurons, not so much though, in fact the parasthesia seems to be spreading.

Other Important Information, habits and pre-existing illnesses

I am an ex-smoker. I smoked an average of half a pack a day from age 30 to 36. I quit cold turkey completely for ten years from 36-46. I smoked intermittently, for probably a total of about 3-6 months of smoking, between 46 and 47. I decided this was incredibly stupid and went on the gum but took about 6 months to get off the gum. I have been nicotine free and committed to staying that way again for almost 2 years.

I drink anywhere from not at all, to slightly, to moderately, depending on a lot of things but the last 5 months or so, not at all. I have never drunk more than moderately, and never that much for very long.

I usually am a diet and fitness fanatic, except when severely depressed as in now and between 34 and 37. (I had mononucleosis and a herniated disc at that time which was operated on when I was 36 years old-- L4-L5 microscopic discotomy). I have been this heavy only during my last depression and this current depression. I have gained 40 pounds over the last 2 years with this depression.

I have Interstitial Cystitis (IC) which bothers me even more that the neuropathy or the depression. I am in chronic pain with it. It seemed like both the TMS and the MST aggravated it a lot but you never really know. It could have been a coincidence. I developed more pain, urgency and urinary hesitancy during these treatments, but I’ve had that before with the IC so I don’t know…

I have severe Allergic Contact Dermatitis to seemingly the whole of the modern world. I was diagnosed with multiple , numerous allergies to chemicals in common everyday products by both an allergist and the head of the dermatology department at Sunnybrook Hospital. I use only organic products on my skin and that seems to control it.

I have hypothyroidism and my free T3 tested low in August but my TSH tests normal. My GP is going to test it again. I am on 30mg dessicated thyroid.
I have very recently developed high cholesterol. I am watching my diet and trying to lose weight. I am on no medications for it.

I have Fibromyalgia. All my joints hurt but they can’t find a cause for it, so they call it Fibromyalgia—that’s the impression I get anyway. They say I am very pain sensitive because of it, so I will probably find the testing quite painful. I will try to endure it and not hurt you back (just kidding).

My own self-evaluation using the following Websites

“An Algorithm for the Evaluation of Peripheral Neuropathy”—from the American Association of Family Physicians (aafp.org) .
I think my symptoms fit in Table 4 (Unusual Patterns).

“An Easy Approach to the Evaluation of Peripheral Neuropathy” from The Journal of Family Practise (jfponline.com).
My symptoms seem to fit in the very last paragraph (“Other Presentations”).

These websites suggest my unusual pattern of neuropathy (feet, legs, left ribs, mostly right arm, left side of face and ears) could be:

HIV--I'm very low risk for this.

Diabetes—has been ruled out.

Lyme disease—I need a test for that. I have almost every symptom of Lyme disease. I worked as a dog walker/dog and cat sitter for ten years previous to developing this current depression. (Do not let my occupation fool you. I am probably the smartest dog walker on the planet and have an honours degree in Chemistry and Laboratory Medicine). I spent a huge amount of time outdoors and in wooded areas and parks walking dogs. I want to be tested for Lyme disease and if I’m convincing enough to my GP, I may get that test before I see you.

Paraneoplastic Syndrome--- Hmm I’m a once, recently lapsed, but back on the wagon, mostly ex-smoker. Do I need a anti neuron antibody serum test? I actually hope not, but maybe if the diabetes and lyme are negative….

Sarcoidosis—Now there’s a weird disease I’ve never heard of. Maybe if the other stuff is negative, a skin or nerve biopsy would be in order. (ouch)

Neoplastic Invasion of the Skull Base or Meninges—I don’t know what that means. It seems to be part of Sarcoidosis from what I can tell though.
See the blood test results for everything else that has been ruled out.
Medications

Up until 2 weeks ago, I was on Parnate for about 6 weeks, slowly increasing the dose from 10 to 20mg, but I couldn’t tolerate the side effects and I read that it can cause parasthesia by interfering with the metabolism of B6, and my parasthesia was worsening, so I’ve stopped taking it.

I have started taking 12mg/day of Amitriptylene for my I.C., Fibromyia and Neuropathy
50mg/day of Hydroxizine for my I.C.
30mg/day dessicated thyroid
30mg/day of Lansoprazole for GERD

Supplements I was taking before developing Neuropathy:
1500 mg/day Fish Oil (For depression, joint pain, general health)
2000 I.U. Vitamin D (general health)

Mega Multi Vitamin: with 30mg B1,B2,Niacin, Biotin; 50mg B6, B12 and pantothenic acid; 400mcg Folic Acid—Stopped taking this about a week after developing neuropathy because my IC was really bothering me and the ascorbic acid in the multi might be irritating to it.

700 mg twice a day of Glucosamine (for joint pain, and I.C.)

After developing neuropathy and worsening IC added:

540 mg/ 3X day Cysta Q: for my I.C. –contains Quercetin, Bromelain, Papain, and Valerian
Marshmallow Root Tea—large quantities all day. It seems to work like an anaesthetic on the bladder.

500 mg twice a day l-carnitine

60 mg twice a day Co-enzyme Q10

200 mg /day Magnesium bisglycinate in morning

333mg Calcium, 167 mg Magnesium, 200 I U Vitamin D—combination tablet—in evening

Early September Added:

50 mg twice a day B complex (reduced this to once a day when I added 50 mg P-5-P and may stop taking it when I add benfothiamine next week)

Raised Co-Enzyme Q10 to 60mg three times per day

Early October Added:

3 mg twice a day methylcobalamine (bioavailable B12)

600mg /day alpha lipoic acid (had to stop taking this recently due to bad reflux of the acid problems)

A week later Added

1 mg three times per day l-methyl folate (bioavailable folate)

25 mg twice a day Pyroxidal-5-Phosphate (P-5-P) (bioavailable B6)

80 mg Benfothiamine (bioavailable B1) 3X per day

Here is an email I wrote about seeing the second neurologist:

He seems like a fine fellow--well, except for the one moment where he questioned my sanity, wondering if it was all in my head. But the stigma and discrimination of mental illness is everywhere. I'm used to it.

My therapist said not to tell him I'd seen another neurologist, to get a completely independent opinion. I thought that good advice and didn't say anything at first, but I've been worrried about the CAT scan decision, so I wasn't completely decided on what to do and brought Dr. XXXX (the first neurologist) report with me, in case I changed my mind for any reason.

So he did all the pinprick, reflex, walk this way and that --all the same neurological tests neurologist #1 did --except the Nerve Conduction and EMG. (Dr. #1 does nerve conduction very first and asks questions later. So he already knows if you've got a problem or not before he even talks to you.)
Then he gave me a requistion for a test for ENA -A Sjogren's Syndrome test. (Dr. #1 suggested testing for Sjogren's so that's the same) and a blood test for Protein Electrophoresis.
Then Dr. #2 tells me, "We can do an EMG and Nerve Conduction, but it won't be until February and I can tell you right now, I don't think we're going to find anything." I still didn't say anything, thinking that could very well be true by February because I'm improving. (Note insert on this: not anymore. I'm getting worse now). I heard him saying to his resident in the hallway he didn't have much concern about there being a malignancy and he wondered why paraneoplastic antibodies had been tested for already. When they came back in I told him I'd seen another neurologist and showed him the report. I guess he was surprised I tested positive for axonal sensory neuropathy. I told him the reason why I decided to tell him, against advice to get an independent opinion, was because I need to make a decision about the CAT scan. I asked quite ernestly, does he think I really need to subject myself to all that radiation if I'm improving? Would I be improving if I had cancer? He said, no, I would not be improving if I had cancer and asked me very pointedly about it again. I insisted I had improved a lot since the onset of the condition and he said, no again, I probably don't have cancer and don't need to get a CAT scan right away. He said to go for the blood tests he ordered and go for a Chest X-Ray. (I seem to have a chest cold--either that or some dreaded disease. It's hard to tell which these days. Maybe it's waning Sarcoidosis. Anyway, if the chest X-Ray or the antibodies come back positive, I'll go for the CAT scan, but based on his advice, I think I'll hold off on it.

He also weighed in on the MST debate. He said some of my symptoms could have been caused by the MST, especially the increase in myoclonic twitching, that it might have given me a bit of epilepsy or increased activity of the nerves. And the facial symptoms and ear symptoms might possibly be due to the MST--maybe, maybe not. He says he's concerned about the facial numbness and would I like an MRI of my brain? I said I'm not into being exposed to anymore electromagnetic fields if I can avoid it. He said it could wait, if its improving, we can wait and see.
He said he doesn't see how the peripheral neuropathy could be related to the MST though.
I said, "Then why did it go away and come back again at the next treatment. And why did my arm start after the motor threshold testing? It's just too much of a coincidence." He looked uncertain, kind of shrugged and said he didn't know.
He concluded with saying that I've certainly been a very interesting patient. I said, "Yeah, that's what my GP said, but she says it's never good to be interesting." He agreed.
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Unread 11-15-2012, 10:47 PM   #2
KristaQ
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Default Tests I'm considering asking for.

If all those tests come back negative and I continue to worsen, I might ask for:

A CAT scan

More tests for Sarcoidosis:

Reason--my great,great grandfather had Sarcoidosis, my symptoms fit and I have other associated diseases like Allergic Contact Dermatitis and numerous other allergies

Serum A.C.E.
dihydroxyvitamin 1,25-D
25 hydroxyvitamin-- D (25D or D2/D3)
Soluble IL-2
Lysozyme, Serum

More tests for Sjogren's Syndrome:

Reason: My symptoms fit this the best of any possibility, I fit the typical demographic that gets it, there's a history of autoimmune diseases in my family. To complete the full Sjogren's screen, I need:

Mitochondrial Antibody with Reflex to Mitochondrial Antibody Titer

Thyroid Peroxidase Antibody (Anti TPO)

From the British Medical Journal--Peripheral Neuropathy Stage 3 investigations:

These have not been covered:

Urine: Bence-Jones protein

Anti HIV antibodies

Antineutrophil cytoplasmic antigen antibodies (p-ANCA and c-ANCA)

From Neuromuscular Disease Center--Washington University, St. Louis MO. USA:

Antibody Tests for Sensory +/- Motor Neuropathy:

Reason: More possible autoimmunity

IgM vs MAG
GD1b
TS-HDS
Sulfatide
HH3
IgG vs Sulfatide

Other tests:

Infections: CMV IgG, Toxoplasm IgG

Toxins:
lead
urine--heavy metals

Reason: the methylated B vitamins seem to really be helping my mood and energy. I suspect I don't methylate B vitamins well and this same lack of methylation can cause toxins to build up in the body as they need to be methylated to be removed.
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Unread 11-16-2012, 07:28 AM   #3
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Welcome to NeuroTalk:

I have two comments here to start with. Do you know what your B12 level actually was, when it was described as "normal"?

Labs still report using old ranges that go down pretty far into a LOW area. The new recommended low Normal is 400pg/ml.(US units). Were you taking your B12 supplement when testing was done? If not, it would be helpful to know what level you had when you were tested.

I do think you may have a problem with that
succinylcholine you were given so often. Here is a link
about it:
http://en.wikipedia.org/wiki/Suxamethonium_chloride
GBS listed in this article is a form of neuropathy.

Various neuropathies have been reported with neuromuscular blocking agents:
http://ceaccp.oxfordjournals.org/content/6/3/119.full

Not many people get repeated (often) doses of succinylcholine, and therefore, it does not appear in medical papers often.

I'd also suggest researching the neuromuscular junction. This area can be damaged. I've seen papers in the past, which showed cellular changes in this area induced by various toxins, like botox.

Seems like you are covering many bases with your supplements so far. People can have mutations in methylation. One of our members here just had DNA testing for it.
Here are his results:
http://neurotalk.psychcentral.com/thread179732.html
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Last edited by mrsD; 11-16-2012 at 07:45 AM. Reason: fixing spelling
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KristaQ (11-16-2012)
Unread 11-16-2012, 10:08 AM   #4
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What other symptoms of Sjogren's do you have?

Sjogren's testing should include anti Ro SSA & anti la SSB. However, 40% of Sjogren's patients are sero-negative, so if this is suspected and labs are negative, then a lip biopsy should be considered.
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Unread 11-16-2012, 12:36 PM   #5
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Default I need a diagnostician

My B12 level was actually high because I was already on the methylcobalamine, so it's hard to say if I was deficient when the symptoms began. They should have tested that in the very first round of testing, but I guess they just forgot it, so now I'll never know. But really, it shouldn't be worsening now like it is, if I've corrected the problem. The tingling has moved up past the knees and the burning in my feet is approaching intolerable. I'm going to try to get some anticonvulsants for it today or Monday.

Other symptoms of Sjogren's include a lot of dryness, fatigue, joint pain and swelling and GERD (which is also worsening lately.)

As far as the succinylcholine goes, I found an article once stating that it can aggravate and bring out a pre-existing subclinical neuropathic condition. But millions of people have had repeated doses of it for ECT. I extensively searched the literature for cases like mine involving ECT and I found just one case study of it, reported back in 1986. (The procedure for ECT and MST are exactly the same except that a machine that causes an electromagnetic field is used to induce a smaller, more localized seizure with MST, rather than an electric current with ECT.) The second neurologist was comparing my concerns about having an MRI to cell phone use. I said that was really minimizing the impact that 14 treatments on my brain with a strong enough electomagnetic field to induce a seizure could have had on me and has anyone even had 14 MRI's in 5 weeks? He agreed we're talking about much stronger fields than cell phone use. --Sheesh.
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Unread 11-16-2012, 01:06 PM   #6
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Sorry for double posting, but they are delaying my posts and I can't find the edit function either.

Also the ENA test is four tests for Sjogren's and includes the anti- Ro and anti-La (SS-A and SS-B) That should be in on Monday.

Also, I've seen that post about the genetic testing for methylation. The 23 and me test is at least a thousand dollars though and I can't afford it. I may ask my pdoc at The Centre for Addiction and Mental Health CAMH, Toronto, today if they do that genetic test there. I should go get the specific name of it now.
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Unread 11-16-2012, 01:26 PM   #7
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All new members are watched for a brief period, to see if they are spammers etc. It will not be long if you continue posting,
before the edit function opens. Once it does it only remains active for 24 hrs. After the 24 hrs the button will no longer show.
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Unread 11-16-2012, 02:24 PM   #8
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Just curious why the edit function doesn't remain indefinitely. Hope I didn't hijack the thread. Thanks.
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"It is what it is, it's not what it was, it's not what it could have been, it is what it is."

Charcot-Marie-Tooth Syndrome (CMT) The Curse.

AKA Hereditary Motor Sensory Neuropathy (HMSN).

"I was once like you and you will be like me."

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Unread 11-16-2012, 03:31 PM   #9
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One can only edit their own post, for 24 hrs. So the edit button only shows for that time period.
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Unread 11-16-2012, 05:39 PM   #10
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Why doesn't the edit button stay on indefinitely. I know that it is on for 24 hours where you can edit your own post. I just don't understand why it isn't on all of the time; why it's set up so that it's only for 24 hours. I believe it was at the forum before this one came into being. Just curious as to why it's set up that way. Thanks.
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"It is what it is, it's not what it was, it's not what it could have been, it is what it is."

Charcot-Marie-Tooth Syndrome (CMT) The Curse.

AKA Hereditary Motor Sensory Neuropathy (HMSN).

"I was once like you and you will be like me."

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