BrainTalk Communities 10/2006-8/2011 Archives

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-   -   HNPP information anybody? (http://74.220.207.183/~braintal/archives/06_11/showthread.php?t=1846)

hmm_md 10-17-2006 04:57 PM

HNPP information anybody?
 
Hi, I just posted my story on a variety of communities here trying to figure out what is going on with me. A very smart individual on the MS board suggested HNPP (hereditary neuropathy and liability to pressure palseys). I went to the link she provided and BINGO! this looks like it fits me to a T. My main issues are a life long tendancy to pinch nerves and go numb for hours to months from silly things like wearing heels (toes), bike riding (hands), using scissors (fingers), crossing my legs, etc... you get the picture. My whole family is like this so I never thought of it as unusual until I left home. So we all live with this, it's just the way we are. My sister has had more severe issues and after a 6 month bout of drop-foot (that spontaneously resolved) she was tentatively diagnosed with Charcot Marie Tooth (CMT). That was later discarded in favor of MS. She didn't like that and hasn't gotten any worse in the 15 years since. I had a nerve conduction study many years ago that showed diffuse slowing in all nerves tested after I broke my ankle and crushed the tarsal tunnel, numbing my foot.

In the last year and a half I have been dealing with one sided facial pain and numbness. It has evolved into a burning that sequentially involves the tongue, then lips, then cheek, then eye, then ear and finally throat all on the left side. It waxes and wanes and seems to do so based on my stress levels. I have had CT and MRI, normal; as well as a battery of blood tests, normal; seen a neurologist who said I'm fine (ahem!) and an ear nose and throat doc who says I have non-motor Bell's Palsey (my research indicates there is no such thing).

So I threw the question out and feel like I am nearing a reasonable explanation. Now is there any treatment?? Does anybody know more about this obscure condition? Thanks in advance for your help.

leaf 10-17-2006 07:06 PM

Hi there,
have you tried looking on www.Hnpp.org they also have a yahoo group,

http://health.groups.yahoo.com/group/hnpp/

and there are other CMT forums and websites that support Hnpp. there is CMTA which has a info page.

I was diagnosed 6 years ago. It is very misunderstood, and can cause much hassle. Most treatments are preventative. Braces for foot drop, splints for wrists etc. Pain is becoming more widely recognised as a symptom, but many write-ups will say it is painless, which is just too simplistic in its assesment.

There are only a few of us here with CMT/HNPP and there is a CMT forum. Some of us hang around in chat from time to time.

bfn,
jon

hmm_md 10-18-2006 02:53 PM

Thank you jon
 
I will check out your links and perhaps repost this question on CMT. Any help as far as tx to alleviate the pain? Thanks again for your valuable links!

leaf 10-18-2006 03:41 PM

Hi Hmm_md,
You asked about sensory only Bells palsy in your first post. I think its quite common for those with Hnpp to have many sensory, skin numbness- touch, episodes. Usually several days to weeks in duration. I've have heard of others with similar problems as yours.
Do you know if you can get a DNA test done.?
I had nerve conduction tests at the same time as my son, as my doc recognised the family connection for ulnar nerve entrapment.
That prompted a DNA test for me, which took about 8 weeks here in the UK.
Like you say, it almost becomes commonplace in the family and everyone thinks its how it is supposed to be.
I saw a pain specialist, who was open to trying many different approaches, relaxation, meditation, medication, physiotherapy, and pressure relieving aids - tempur matress etc.
I dont think there's one thing that works for everyone, it's different for all, so there is a lot of trial and error.

Another good source of help might be MdaUSA -
http://www.mda.org/publications/fa-cmt.html

jon

hmm_md 10-19-2006 08:35 PM

great info
 
Thanks Jon, you are a wealth of information. My sister's drop foot episode lasted for about 6 months. She was actually fitted with a brace. Most of the rest of the family and the rest of the episodes are pretty mild. I have had my entire arm go numb for about 6 weeks after gardening. I thought I herniated a disc. The MRI was normal.

This burning sensation over the left face has become a real drag. I am so tired of it after a year and a half. At least since it hasn't progressed to anything more ominous that is good. HNPP actually seems like an excellent fit for a diagnosis. I was hoping for a treatment that would make it just go away. I guess that is not realistic. I have always had to just wait until my episodes resolve on their own in the past.

Although, when I had carpal tunnel syndrome, simply sleeping with the wrist braces worked easily and fairly quickly. I have now 'trained' myself to sleep with my wrists straight and rarely have a problem. (Now I lay on my side at night and wake up with both arms asleep and cartoon-character hands -- feel like they're as big as the bed). At any rate, in my circuitious way -- sorry, I'm thinking that the duration of this may be related to a chronic entrapment, much the same way as my wrists being bent every night in my sleep was causing the carpal tunnel problem. I was once diagnosed with temporo-mandibular joint problems by a dentist. I wore a mouthguard for years to stop grinding my teeth and for headaches. When I had some dental work ages ago I stopped wearing it. Maybe I should get a new one. If the trigeminal nerve is being pinched everytime I open my mouth and especially if I'm clenching or grinding my teeth in my sleep -- when stressed, exactly when this flares-- that may explain a lot.

I think a dentist may be my next stop. Getting the genetic test may be interesting but it seems somewhat unecessary as there isn't much that can be done. I had to laugh at the preventative measures that were listed on the website. All stuff I have been intuitively avoiding since childhood anyway, a no brainer!

It is good to have a name for this, though. My mom, sister and I have all had abnormal EMGs which have caused us all worry and the neurologists just want to keep giving us new EMGs every year to track us. We all said no thank you!! We will have to become sufficiently miserable to repeat that lovely experience.

BTW, my daughter doesn't seem to sense it when she is either hungry or has to urinate. She does both out of habit (she's 13), and when I remind her, and is often surprised at how much better she feels. I'm wondering if she represents the "next generation" of neuro abnormalities. Ever heard of that?

leaf 10-20-2006 05:58 AM

I would imagine your neuro should be able to make a diagnosis based on your symptoms, ncv/emg, and such a strong family history. It certainly sounds like HNPP.

I suppose I was tested because it seemed to pop out of nowhere, that is I have no obvious family history. I think there possibly are some family members with hnpp, but very mild, some even believe I'm making it up, such is the level of denial. I'm still convinced that its just become a part of family culture that often symptoms are accepted as normal. I honestly thought that everyone had dead arms in the morning, or a foot which goes to 'sleep' if crossing legs or sitting on it... etc etc..
However it could be that I am a new mutation, the first in the line, but that is quite rare. My doctors have suggested this.

I've got a good AFO, its a spiral type, made from composite material, so it's really light and strong.

I havent heard of symptoms getting progressively worse with successive generations, as far as I know it shouldn't do that. Some of the current research does suggest that other genes not in the deleted region may alter the presentation, a small mutation elsewhere which would normally not cause disease does so when coupled with the Hnpp deletion. It's suggested that this may be the reason for such variability in symptoms. I must look for the reference for this, I think it was James Lupski's hypothesis, he was partly responsible for discovering the mechanism of the Hnpp deletion in 1993.
http://imgen.bcm.tmc.edu/molgen/facultyaz/lupski.html
http://www.imgen.bcm.tmc.edu/molgen/lupski/

Jon

hmm_md 10-25-2006 07:21 PM

connection between HNPP and hearing loss, vertigo?
 
I just read your bio on one of the links you posted. The history of hearing loss and vertigo jumped out at me. My grandfather (who complained of numb fingers after doing certain tasks on the farm) became progressively hard of hearing from a young age. My dad, always very protective of his hearing, wearing ear plugs for anything noisy or prolonged, has had the same course. He has the most trouble with his arms going numb in his sleep especially if over his head. He has to call for help to get his arms lowered when this happens. My youngest sister has been going deaf slowly since she was about 35. She hasn't turned 40 yet and is getting a hearing aid.

My sisters and I have all had bouts of vertigo. About 20 years ago I had what was diagnosed as viral labrynthitis. I had about 3 weeks of intense vertigo. At the worst I couldn't tell up from down and wasn't able to get off the bed or walk. Even sitting or lying I was sure I was being pitched through the air and tossed off the bed. I still have moments of really scary dizziness, but they always go away so fast that I haven't mentioned it to a Dr. (I can imagine the conversation: I get dizzy sometimes. Are you dizzy now? No. Were you dizzy today? No. How long does it last? A few seconds. So..... what did you want me to do for you?) My sister that had the foot drop episode has been diagnosed with Menieres. My sister that is going deaf gets dizzy and has a terrible time with motion sickness.

Is this a coincidence or do you think HNPP is related to inner ear problems? I never thought to put them together before.

leaf 10-26-2006 07:16 AM

I was surprised at the number of people with both meniere's and HNPP, not everyone but even finding one other with both in a group of 130 people would have been a surprise. But there were at least 6 others, and then there were those with hearing loss and tinnitus or and other forms of hearing loss such as Auditory neuropathy.
I have tried to discuss this with my Doctors but they are so blinkered. I may as well talk to a clod of earth, at least it wouldn't be patronising and arrogant.

There have been several reports in med literature pointing out this combination, most recently this one,

Quote:


Otol Neurotol. 2005 May;26(3):405-14.

Sensorineural hearing impairment in patients with Pmp22 duplication, deletion, and frameshift mutations.

* Verhagen WI,
* Huygen PL,
* Gabreels-Festen AA,
* Engelhart M,
* van Mierlo PJ,
* van Engelen BG.

Department of Neurology, Canisius-Wilhelmina Hospital, Nijmegen, The Netherlands. w.verhagen@cwz.nl

OBJECTIVE: To characterize and distinguish the types of sensorineural hearing impairment (SNHI) that occur in hereditary motor and sensory neuropathy Type 1a (HMSN-1a) and hereditary neuropathy with liability to pressure palsies (HNPP), which are caused by deletion or frameshift mutation. STUDY DESIGN: Prospective study. SETTING: Ambulatory patients in a university hospital. PATIENTS: Twelve patients with HMSN-1a due to a duplication of the PMP22 gene on chromosome 17p11.2, 16 patients with HNPP due to the common PMP22 deletion (HNPP del), and 11 HNPP patients with a frame shift mutation (heterozygous PMP22 G-insertion) (HNPP mut), all confirmed by molecular genetic analysis. INTERVENTIONS: Pure-tone audiograms and speech audiograms were obtained. MAIN OUTCOME MEASURES: Results of cross-sectional analysis comprising linear regression of hearing threshold on age. RESULTS: Pure-tone audiograms showed mild to moderate SNHI, predominant at the low and the high frequencies. SNHI showed significant progression by approximately 0.4 dB per year at 0.25 to 4 kHz and up to 1 to 2 dB per year at 4 to 8 kHz. Patients with HMSN-1a had substantial, presumably congenital, SNHI but did not show significant progression beyond presbyacusis. Patients with HNPP showed postnatal onset at age 11 years with progression of SNHI in excess of presbyacusis by 0.4 dB per year. All three types of neuropathy showed normal speech recognition. CONCLUSIONS: All three types of neuropathy showed SNHI with normal speech recognition. HMSN-1a showed stable SNHI without progression beyond presbyacusis. HNPP showed progression beyond presbyacusis with postnatal onset. The differences in SNHI may be explained by the differences in PMP22 expression. The progressive SNHI in HNPP might be explained by the liability for exogenous factors associated with this disorder.

PMID: 15891642 [PubMed - indexed for MEDLINE]
I think the conclusions hit the nail firmly on the head.

I've tried numerous medical treatments, and even surgery (saccus decompression) to control the vertigo, all with limited success. I use cinnarizine as a vestibular sedative and to reduce nausea, it is also supposed to have some action on the fluid balance of the inner ear by it's calcium channel blocking action. I think in the US it's stronger and longer-lasting derivative is sometimes used - Flunarizine. It's a type of anti-histamine, but with other effects. It can also be used as a Migraine preventative, though not very often.

Do you also suffer from Migraine? I wondered whether this might be the provoking factor for some.

Jon

hmm_md 10-26-2006 02:26 PM

dizziness, deafness and migraines
 
This is really fascinating to start to tie a lot of these seemingly unrelated things together. I didn't mention, but remembered reading your last post, that my grandpa, dad and sister with the hearing problems all complain of really noisy tinnitis. My grandpa used to get really aggravated. He would say he felt like he would be able to hear if the ringing would just get a little quieter, it drowned everything out.

I do get migraines. Thankfully, they are not the intractable kind and are usually very responsive to an over the counter remedy (I usually take Excedrine Migraine which contains aspirine, caffeine and acetominophen). I know that one of my triggers is hormones as I started to get them really badly, really frequently and more difficult to get rid of when taking a depot form of progesterone for birth control. When I stopped that and switched to a non hormonal method, I went back to the occasional, easy to control kind.

Let me ask you this: have you seen any relationship (or heard of it) between HNPP and Benign Hypermobile Joint Syndrome (aka: Ehlers Danlos type IV)? It's a mutation in the gene that codes for collagen fibrils making them too stretchy. This is something that I am 99% sure runs rampant in our family (more from Mom's side). Personally, I've herniated a disc, torn both rotator cuffs (shoulders) with subsequent chronic dislocation, dislocated a tendon in my left ankle, etc. Other family members with similar stories. It seems that the joints that slide around too much, the swelling after injuring myself + the tendancy to be numb and have decreased sensation kind of work together to make me miserable..... well, that's overly dramatic... it's a way of life that makes me look like I must be a klutz.

When I was going to PT for my ankle after surgery to put the tendon back where it belonged they used electric stimulation to the area to promote increased blood flow. They told me to let them know when I started feeling shocks and they would dial it back a notch. They kept turning it up, I felt nothing. Finally they stopped because it had never been that high and checked the plugs and connections thinking it wasn't working. Then the therapist tried it out on himself and yelled "ouch!!" He couldn't believe I felt nothing at all. We realized then that one of the reasons I keep hurting myself is that I don't feel that warning pain to stop doing something dangerous until I have a blowout.

BTW what is an AFO?

leaf 10-27-2006 06:06 AM

I nearly fell off my chair when I read your post!

I don't know about any relationship between ED and HNPP, though I have heard of a few others with very lax joints, but no definite DX of ED. I have always been a bit on the 'loose' side, but not to that extent. However, with my fathers history, he died from aortic aneurysm rupture at age 37, there is a query over Marfans syndrome, which I think is a similar problem to ED.
I had pretty much dismissed that as being a problem for me, until they measured my leg and arm length compared to my height, and I'm well above the normal range. Armspan 6-6, height 5-11. My legs are a bit on the long side but not as excessive as my arms. I am awaiting a full scan of my aorta with measurement of the Aortic root. HoHum... fingers crossed ...

Oh almost forgot... AFO - Ankle-foot Orthosis - I have one for my right leg, because of the foot drop. I have a Toe-Off, spiral type, made from hard composite material. Light and very effective, but chews up shoes for breakfast. Buying suitable footwear to go with it isn't easy.
http://www.camphealthcare.com/orthopedics_toeoff.html

Some people over in the UK are trying the SAFO, they are expensive though.
http://www.safo.eu.com/en/index.html

Jon

leaf 10-27-2006 08:11 AM

I've just seen a mention of this, Anesthesia Dolorosa, and it sounds much like the symptoms you were describing.

http://facial-neuralgia.org/conditions/ad.html

hmm_md 10-27-2006 08:04 PM

lax joints
 
Well to be perfectly honest, I've come to the conclusion that I have hereditary Benign Hypermobile Joint syndrome the same way I'm comming to the conclusion that HNPP seems to fit perfectly. Between the two virtually everything is explained for many family members. I wonder if we could interest a neurologist to study the overlap between the two syndromes.

My sister who had the drop-foot and meniere's has a "Marfanoid" look with the long limbs and digits. She had to have bilateral tendon release surgeries on her knees in highschool because of chronic dislocation.

My mother and daughter can dislocate their shoulders painlessly at will. I have had shoulder injuries and while my shoulders dislocate fairly regularly it is certainly not painless and certainly not at will.

My sisters, myself and all my children can do a weird 'bendy' thing with our thumbs that make them look like rubber that usually nauseates the uninitiated (and tends to delight us).

If I had to bet I would think that the two were probably linked in some way. Either close on the same chromosome or influenced by the same factors.

What a find to come across someone from around the world that has a similar history. Though we are probably not so genetically distant. Many of my ancestors came from England. One of the most notable was John Guild who came from Suffolk in 1632. (I don't know that he was notable in England, but he's probably the first in the American line).

Oh, I got the link you posted on CMT on facial neuralgias. Thank you! That is a pretty close description. Best of all though is that the Dr. mentioned is at Cedars-Sinai. That is the hospital 2 of my children were born in. Very close. I will try to contact him.

leaf 10-28-2006 04:05 PM

I'm sure there are quite a few others like us with Hnpp. It's funny to hear you talk about your mother and sister dislocating their shoulders at will. I was asked about dislocations by the geneticist with reference to marfan's. I actually said no, but wanted to say that as a child I could pull my shoulders out quite easily, I'm not sure whether that was what was happening or not, and as I grew older I ceased to be able to do it. as I wasn't sure I chose to say no. hmm I wonder.

I've had a fair few knee problems as a teenager, and later in life when cycling to work everyday. But no dislocations, thankfully. knee problems of one type or another do seem to be very common in Hnpp and Cmt. Being such a complicated joint and having to bear such heavy loads it almost seems inevitable. The laxness maybe something else on top. Or maybe even as a result of genes whose function is yet to be discovered, that exist in the deleted region. I think there are 44 in total... only 4 are known ... maybe 5 ...

I've been researching my family history recently, and there is a branch of the family from Suffolk, though I cannot get back further than the late 1700's, with the Hammond, and Upson families. I was able to introduce my mum to a 2nd cousin she didnt know about, they've been chatting on the phone over the last week. I think they both enjoyed talking about their past and growing up on the streets of London between the two world wars.
I'm still non-the wiser on who I inherited Hnpp from, perhaps I really am a new mutation. That feels quite unsettling in some ways.........

Good luck with the neuralgia doc. I hope you manage to get some answers and better still some treatment of some kind, though I've found that most treatments are fairly conservative and preventative in nature. But its a step in the right direction.

best wishes,
jon

LizaJane 10-29-2006 01:10 AM

When I was first being worked up for the cause of my neuropathy, I had similar suspicions to you about HNPP or CMT variants. My family has a history of hereditary sensineural deafness, which is clearly an autosomal dominant and has devastated my mother's side of the family. In addition, that side has hammer toes, "weak ankles", and very low indurance. My mother, for example, had difficulty with any endurance sport when young, and now, in her 80s, can say she's either sprained or broken an ankle countless times.

Since my childhood, my limbs always fell asleep easily, which I thought was kind of a game, and would do on purpose sometimes. My ankles frequently turned, and I had zero endurance. I was put in remedial gym for not being able to run around the track, yet won the President's Physical Fitness Award, because I could do countless situps and climb a rope to the ceiling in record time. I developed bunions. I had orthostatic hypotension.

And then, I developed neuropathy. And went for a quest for the mega-workup and genetic work-up. Nothing came up.

Since then I've just had major back surgery because of synovial cysts causing spinal stenosis and cauda equina syndrome. Why? Because I have spondylolisthesis because my spine is so mobile.

In the end, it doesn't matter about finding the gene; it matters about figuring out how to protect, save, and improve regeneration of our nerves.

But I am a stickler about diagnosis, and put together a website: www.lizajane.org, which has spreadsheets outlining the tests available for finding an etiology. I think I've listed most of the genetic testing available at the time I put the site up, maybe 1 1/2 to 2 years ago noww.

Please check it out. If there are tests I've missed and you think I should include, let me know.

Good luck in all.

LizaJane

www.lizajane.org

leaf 10-29-2006 08:11 AM

Well it has been known for some to still have a diagnosis of HNPP even though genetic tests are negative, other investigations will also be required to exclude other pathological processes. And of course we are human and may have other ailments besides.

Having a genetic test for pmp22 deletion/duplication is usually the most definitive way to diagnose Hnpp, but it's not fool proof. I could have declined having the test, but the most likely diagnosis was Hnpp, with the other possibilities having been eliminated. A geneticist will most likely discuss the problems associated with having a genetic test.

Consulting a competent neurologist is the best way forward for a diagnosis, and suitable treatment. That may or may not require finding the gene responsible.

As far as I know the CMT1a/Hnpp test is the same. It will find the common deletion or duplication. Less common mutations involving only a few base pairs within a particular gene can also carried out, along with gene sequencing. It all depends on the Lab that carries out the tests.

A good list of tests available can be found here,
http://www.athenadiagnostics.com/

LizaJane 10-29-2006 11:26 AM

lizajane.org
 
When I put together www.lizajane.org, I used a lot of sources for the recommendations. Athena was one. Washington School of Medicine, Mayo Clinic, textbooks, and articles also helped. You seem to be very knowledgeable about testing for these disorders. If you think there's anything worth adding to lizajane, I'd love the input. Sticking with Athena will get some tests done but does not cover everything.

leaf 10-29-2006 12:19 PM

LizaJane,
I only know what I've read on the Athena site. Someone in the UK asked recently what tests were available in the UK after reading about the tests in the US. Athenalabs seemed well ahead in the game, only the very basic tests are available over here.
jo n

LizaJane 10-30-2006 02:50 AM

Again, anybody who is still being diagnosed can benefit from looking at the charts on www.lizajane.org. I'm not going to beat a dead horse about it, but it's a pretty comprehensive list, and organized in such a way as to make conversation wtih doctors about diagnosis more structured.

It works for other things we need to follow about ourselves, and catches trends before we'd find them if we were looking (our docs looking) at individual reports.

But I'm glad you've gottent the tests you feel you need. In fact, when the cause is obvious, one can do a lot just working with that. It took me over a year to surrender to the diagnosis of idiopathic and give up the hunt for a cause.

But even then, I did not realize that cauda equina syndrome causes peripheral neuropathy of the legs, and that I had not been evaluated for that.
By the time it was diagnosed, I'd been extremely symptomatic for a year. And, having decided that I had "idiopathic" peripheral neuropathy, all my doctors attributed that year's worth of symptoms to it. So now, cauda equina syndrome work-up makes it to the chart.

hmm_md 10-30-2006 04:03 PM

hammer toes and spondylesthesis
 
Wow. I'm falling off my chair reading the added posts by LizaJane. Hammer toes are rampant on my father's side of the family. He has to wear specially made shoes because of it (would never consider surgical correction). My sister (Meniere's, dislocating knees, drop-foot) had her hammer toes surgically corrected, however has suffered from recurrent neuromas in the area ever since. They also have an extremely high arch. I inherited my mother's normal feet but she is the one with the lax joints that I've gotten in spades. The description of LizaJane's mom with the numerous ankle injuries would also describe me. I have had 3 surgeries on my left ankle (once broken 3 places, once dislocated tendon), broken right foot and too many sprains to count.

Oh, and speaking of spondylesthesis -- my mom was recently told that that is the cause of her recent spate of bad headaches and numb arms (her issues are in the neck area).

I think maybe I am the result of two families and their disorders colliding! I will check out the website and use it to come armed to my next drs appt. Thanks.

LizaJane 10-31-2006 09:19 PM

hmm--you think you might be a CMT variant, or something specific other than HNPP, or just one of that vague category of inherited neuropathies?

I'd say my family has a long history of nervous systems which don't work quite right, but don't kill anyone. Orthostatic hypotension, other autonomic signs, high arches with weak ankles, poor endurance, nerve deafness, my daughter with "growing pains" in her legs at night since age 1 or 2 (?restless legs?) and scoliosis. ADD. You know, nerves at risk might just be that--nerves at risk, running in a family, but not meeting anyone's specific criteria for a specific defect.

Nonetheless, based on the history, I take everything I can to beef up my mitochondria and energy production, as well as the usual antioxidants and fish oil. Yoga helped, but then I got the cyst, so now I'm getting ready to settle for tai chi.

Please let me know how you doctors react to the charts; most are happy to be given a direction.

LizaJane

euphoniaa 11-02-2006 08:42 AM

When genes collide!
 
Wow! Lots in information on this thread. Although I've been dx'd with HNPP, it has sure been difficult to come up with comprehensive, current stuff about it. I'm going to go print up the links and read them more when I have time.

Some of you know my history, but for anyone else, I have a cousin with MS (and carpal tunnel), I recently found out another cousin has HNPP, my dad has HNPP confirmed by genetic testing, and I have a dx of both MS and HNPP.

I'd doubt my MS dx after reading all this HNPP info, but my last neuro told me that I have one of the most definite cases of MS she's seen. I have a brainful of "classic" MS lesions, with ones also noted on the brainstem, spinal cord, and optic nerve. I have oligoclonal bands in the spinal fluid, and abnormal evoked potentials. I have MS.

However, my EMGs also show carpal tunnel in both wrists and both elbows (HNPP). I've always told people that HNPP is like MS without the brain damage, but I recently found out that researchers are also finding CNS lesions in HNPP patients.

Although I've already figured out that almost all of my MS symptoms could also be attributed to HNPP (and age...:) ), the most interesting thing about this thread is realizing that all my MS-type exacerbations could be from HNPP also.

Years ago I had a nasty sciatic nerve experience that sent me to the emergency room, a week-long episode of vertigo, and a week where I woke up with a loud, scary, roaring in my ears that has dwindled down to a constant tinnitus. MS or HNPP, I wonder?

My ankle (joint only) swells up for no reason and my knee swells up from an old high school injury where I dislocated my knee and chipped the bone.

I found the migraine thing interesting because I get what I call 3-day sinus headaches. I've had one since last Saturday. But this one finally culminated on Tuesday into a one-sided killer headache from my eyebrow, across my head, and down my neck to my left shoulder. Yikes! I also get an occasional ice pick in the side of the head.

About foot drop, which my dad and I have -- my dad has a stiff AFO that causes him pain, so I'm going to try what a lot of MS patients use -- the Foot Flexr. I just keep forgetting to order a set. I figure I can split the pair up and give one to my dad. :) http://www.speed-fitness.com/ffsecret.htm It's an elastic band that hooks to your shoe and flexes your toe upwards.

Sorry for the length of the post. I wish you all get answers and find some relief. :) Keep writing, though. This is interesting.

P.S. My most recent HNPP experience was after buying my first cell phone. After my first 20-minute conversation, my last 2 fingers went numb, along with my entire arm up to the elbow. It took a couple of weeks for the numbness to gradually go away. That is NOT MS -- it's HNPP.

hmm_md 11-03-2006 05:53 PM

when genes collide
 
Susan, thanks for the extra information. I have to say that I am really excited to see some similarities in others. Interesting that you mention MS being spoken of as HNPP without brain damage. Myself, my sister and my aunt have been told at various times that MS is at the top of the differential and that it would probably declare itself eventually. I keep waiting for the other shoe to drop but it never does. My aunt had the oligoclonal bands in the CSF. None of us has had any demyelenating plaques. I think I'm mostly relieved that HNPP provides an excellent explanation and that we don't have to wait for an eventual, definitive dx of MS.

I also had to laugh when you described getting your cell phone. The same thing happened to me! I hate that you have to keep your elbow bent so far. With a regular phone you can give your elbow a break with your shoulder. I can only go a few minutes without switching hands before my arm goes numb from the elbow down to those lateral fingers. I'm always making excuses to get off my cell phone.

My ankle swells a lot too, but I guess it is what I should expect after so many injuries. I really think my prediliction for numbness is a liability when it comes to my loose jointed tendancy to injure myself.

LizaJane: I remember terrible "growing pains" from childhood and my children have all experienced it as well. My son to the extent that I had him xrayed -- normal of course. My sister has slight scoliosis. My other sister's first 2 children had mild hip displasia. No ADD that I know of <knock on wood>.

Maybe we can form our own rare disease entity..... hmmmmmm.

Holli


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