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Is this TOO untypical to be MS?
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Is this TOO untypical to be MS?

I am concerned over the possibility of MS, due to intermittent (but daily) fatiguing/weakness of the legs/accompanied by rapid cramping/muscle & joint pains when walking. There is also some tingling (confined to the feet), and an overactive/irritable bladder (which varies enormously in severity from day to day). There are no other neurologic deficits, nor any other history of them at all. Onset of illness was 14mnths ago, presenting with bad headaches and widespread muscle and joint pain. Clinical neuro exams are normal, and brain MRI clear. The thing is, I have no sensitivity to heat at all (even when the legs are very weak and painful, I enjoy a hot bath) -- and I can actually walk miles, even when the legs are aching and fatiguing badly. They never 'stop working' and I have never fallen (or even felt like I would). I never get the symptoms of tingling or cramps at night and rarely at rest. If this is too atypical for MS, what differential diagnosis might be offered? I'm 40 years old, and not any meds.
Thank you!
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Avatar_n_tn
MS is always a consideration when young women present with vague neurological complaints. A normal MRI brain and neuro exam are somewhat reassuring, although 10% patients with MS do have a normal MRI initially. Other testing to help support or make the diagnosis less likely include evoked potentials and spinal tap. But this should be taken into clinical context and certainly not be routinely ordered for every patient.

Please keep in mind I have never examined you nor have I reviewed your clinical history in detail. But if the symptoms are mainly in your legs, there may be a problem with your spinal cord (esp with bladder symptoms) or possibly with the muscles in the legs. Another possibility  with the headaches, msucle and joint pains is an inflammatory or rheumatological disease. ROutine bloodwork to look for inflammatory markers, muscle proteins such as CK and aldolase, thyroid function, blood count and electrolytes may be considered. Finally , depending on the clinical suspicion of your physicians, further testing with MRI of the lower spine and EMG may be considered. Talk to your doctors about your concerns. If your symptoms continue to get worse, consider a second opinion at a major academic center. GOod luck.
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Avatar_n_tn
I also have simiarr symptoms. I am a 31 year old female who has been suffereing with a range of disturbing neurological symptoms. It started 2 years ago with twitching and fasiculations. Upon a work up they found I have a b-12 vitamin deficiency. (Now I get monthly shots). This first diagnoses was comforting and my twitches lessened. Also my MRI showed up negative. I tried to get through the EMG test but couldn't do it - had a horrible panic attack. A Year later pins and needles and burning appeared throughout my body but centralizing in my left arm and leg (but not exclusive too).also some shakyness in hands. Back to the doctor. Another MRi negative - Tried to do the EMG 2x (with a sedative) still couldn't get through it. Although I did get through the needle portion of the test which was negative. The buring and pins and needles and twitching all still come and go. I'm currently taking trazadone (for sleep) and the occasional klonopin for when m symptoms get bad)

Recently - a new and exciting symptom which has me freaked is my tongue seems to be listing towards the left. When I am not paying attention my toungue lists toward the left side of my mouth. When i stick out my toungue it also seems to be leaning toward the left

Does the doctor have any suggestions?? Do I go back to the neurologist who i feel has pretty much written me off?

Also - my 62 year old mother was just diagnosed with Motor Neuropathy although no cause has been found.

HELP!!!
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Avatar_n_tn
I'm not a doctor, but the symptoms you describe sound to me to be more like PVD than MS. I have been diagnosed with PVD.

Symptoms of peripheral vascular disease (PVD) vary by individual, and some people with PVD do not have any symptoms at all. Basically if your legs hurt when you excise like walking fast and that pain then stops when you rest, then you may have PVD. For my legs, it felt like pins and needles sticking in my leg right below my knee. Elevating my legs above my heart relieved the pain.

PVD (a.k.a PAD) can be a serious condition (meaning your other arteries may also be blocked). Do NOT ignore these symptoms. Slow moving blood in your legs can easily form blood clots which can break loose travel up leading to a heart attack or even stroke.

A simple and inexpenive ABI test done in your doctor's office should be able to detect it. This test compares the blood pressure of your arm to the lower leg/ankle.  Lower pressures in the leg would indicate possible leg blockage. Ultra sound is also used to detect flow at various points in the leg.  The first test I had done was called a doppler, it was basically a combination of PB monitor with 6 cuffs and a color ultrasound, they check the pressures at your arms, thighs, below knee and ankle and arteries in your feet.  They found blockage on me, had to have an angiogram and angiopasti.  Week later the hair on my legs started growing back. I'm only 46.
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Avatar_n_tn
PVD is an interesting theory -but I do not think my pins and needles are related to any sort of excersize. They are also quite random and all over my body (more centralized in my right arm and leg though)...Also - sometimes they feel better when I do yoga. Do you think it could still be PVD??? Is there twitching involved in PVD as well??
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Avatar_n_tn
I truly understand how everyone feels.  I have ha muscle twitchings for over 6years.  I have finally found something that works for me.  I have been using Maginesum.  I order from a site on the web.  It it Maginesum in its pure form. It is actually called Maginesum Magic (19.99) You have a cup a day in boling water.  I don't have all the tongue and eye twitch and itching that is associate with this disorder.  I was told by a Neurogologist my condition was benign this did not help.  I have tried everything I can find.  I am sharing anything I have with other people who have this condition.  I am not selling anything here.  I am not a sponsor, or receive any kind of kick backs.  I feel good, I sleep good.  This stuff has worked wonders for me.  Please give it a try.  


***@****
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Avatar_n_tn
Hi I had a question about a nerve conduction test and MS. If a person has a nerve conduction test, will MS show up on it? I had a NCT done a month 1/2 ago with slight abnormalities, but the doctor said it was basically normal. I didn`t understand this... Before the test I was having tingling, burning, and tightening in my tendons upon bending over. I had a normal brain MRI before the NCT.
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Avatar_n_tn
Dear TabA,

I believe the answer is essentially no.  The nerve conduction  test looks at peripheral nerves.  MS damages only the central nervous system (the brain, and the nerves descending/ascending the brain to the spinal cord).  My understanding is that sensory changes in the spinal cord generally don't register on the nerve conduction test, although supposedly there are some subtle changes one can look for.  When people really want to study the intactness of the spinal nerves, they can do what is called a somatosensory evoked potential study(I wrote an explanation of what this is in a post above).  I always warn people, though, that this test is not very sensitive.  There are a lot of false negatives - meaning, there's damage, but the test is negative because it can't see it.  It's helpful if it's positive, but not so helpful if its negative.

In terms of my earlier question about epidurals, have you had any back problems?  Any changes in your bowel/bladder/sexual functioning (sorry so personal, but there are ceretain illness in which these run together with other nerve problems)?  Any trauma to the spine?  Meninigitis?  Lumbar punctures?  How much of your problem is pain, and how much numbness and other changes?

Annika
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Avatar_n_tn
Hi Annika,

Thanks for writing me back... I`ll tell ya the history of my delivery. I am 4 months postpartum. My daughter Andrea was born 08-15-02. She was mine and my husband`s first child. She weighed 9 pds., 7 0z. and was a big baby. When the CRNA placed the epidural in my back, she didn`t place it right, it had to be placed again. However, I didn`t get a headache or have a metallic taste in my mouth. So she said that I was probably fine. 2 weeks later, I had a small backahe that went away. Then a few days later, I had this horrible (paralyzing pain) that shot up and down my back for about 10 seconds, then it stopped. After that, I started having tingling in the hands and feet, burning sensations on the skin, tightening in my ankle tendons and right arm, and muscular twitching. The burning has went away, most of the twitching, most of the tightening, and most tingling. I have now developed a new symptom though. My right leg tingles with a buzzing sensation went I bend my head down. I haven`t had any bowel / bladder changes or sexual problems. I do not know what caused all of this, but I wish it would go away. I hope it wasn`t the epidural, I don`t think it was...thanks...good luck...this page has been such a support for me, I don`t feel alone anymore.
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Avatar_n_tn
I didn`t answer this in previous answer. I haven`t had a spine MRI yet, so I don`t know what`s going on with it right now. I hope it`s all normal though....
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Avatar_n_tn
Dear TabA,

I wrote you a long answer under the post further down on this page: "MS-like symptoms, no positive diagnosis - what next?"  I'm afraid, though, my reply will only raise more questions than it can answer. I've written other posts on this subject within some of the other recent questions here too.  I'm speaking only as a patient who has arachnoid adhesions in the spine, and don't mean to be trying to diagnose your problem.  I just know that the information on this condition can be difficult to find.

Sincerely,
Annika
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Avatar_n_tn
i am a 35 yr old female.  i have had many problems in many different areas for most of my life.  when i was a child i had severe leg cramps at night(i still have them),bloody noses in heat or exercise, fatigue, inability to sleep, inability to relax, worrying, headaches, and large leg muscles.  

after the birth of my daughter 14 yrs ago i began gaining weight, (even though i was breastfeeding), i developed gastro problems such as; painful stomach swelling with horrible smelling gas and burps..(like sulphur) constipation one week and diarhhea the next. extreme fatigue, more muscle cramps than usual, joint pain and stiffness. my hair began to fall out and is still doing so.  i began to have trouble concentrating and remembering things. some days i am so confused that i cannot think and speak words correctly.  i mispronounce or run two words together or just draw a complete blank.  this gets worse in the fall.

now i have been told i have fibromyalgia, rheumatoid arthritis and possibly lupus.  i have been tested for lupus since my daughter was born...i consistantly scored 1:40.  now i have 2 recent scores of 1:620 and 1:340.  but back to 1:40 now. my doctor says i have hypertrophy of my muscles.  i do look like a weight lifter!  i have fascillations all over my body. mostly in thighs, calves, and arms.  i have a jerking sensation of the muscles in my back and stomach. especially at night when about to fall asleep.  sometimes i jerk so hard that i scare the **** out of myself and my husband!  my whole body jerks violently but there is no pain.  

everyday i wake up to extremely stiff joints and muscles.  the tendons in my knees and neck are so tight that my knee caps are being pulled to the outside and my tendons stick out like they would on a skeleton. my neck muscles never relax and are hypertrophied.  the tendons also are very tight and i have fascilations and extreme cramps/spasms.  i have had an mri of my neck and they said the vertabrae are so swollen they cant see between them.  i have severe migraines from the tightness.  muscle relaxers give me some relief, relafen gives me some relief for the joints.  an x-ray of my neck shows the vertabrae stiff and straight instead of curving back like normal. i also have a swelling on the top of my clavicles...feels like bone.  right now my neck is killing me cause i am holding it still to type and veiw the monitor screen.  

recently i have seen a specialist who suggested ms and sent me for blood tests. because i cant work i have state medicaid and only get to see the specialist every 3 months.  and i dont know the results of the blood tests.  other symptoms i have are tingling and numbness in fingers and toes...also a very cold feeling on the tip of one or two toes/fingers at a time(but others are fine). when it is cold and i touch something like the steering wheel or when i hold the chain leash and walk my dogs, the cold makes me feel like my hands are being burned.  frozen foods/ice are impossible for me to handle for more than a minute.  i still have the gastro problems but zantac helps with that.

every summer i get rashes, i am dizzy in the sun if it is hot and feel like fainting if i am in it very long. also, a moderately comfortable temp for others is like torture to me. i am so hot that i get rashes/severe itching and am very irritable.  when the ac went out i felt like i was losing my mind!  i could barely stay calm. i also develop little pink freckles across my nose, under my eyes and sometimes on my eyelids and forehead.  i also experience a strange tic in my eyelids that is off and on to both eyes.  i used to have a tingling pain down my legs at night that would drive me crazy. it felt like ants were crawling up and down my bones with a dull muscle pain. elavil has stopped this so far.

in the fall the all over body pain starts. i feel tenderness, extreme muscle and joint pain in almost every muscle and joint, even my jaws. doing normal activities exhausts me.  my muscles feel like i am exercising them to exhaustion.  they stop working, i feel weak and have to sit down quickly.  i can no longer do my stretching exercises because they cause severe muscle cramps. now the muscles in my arms are hypertrophied.  i used to be very strong but the past 10 yrs i have been getting progressively weaker. if i am hit with adrenaline, immediately my legs start shaking from weakness and i cannot stand.  my whole body shakes and i cannot make my muscles work.

ssd says i am not disabled...i dont know what to do.  i literally take each day and plan what i will do by how i feel. i never know how severe the probs are going to be. i also have been developing feelings that encourage me to stay home. i dont want to go to doc, store, etc.  i never know what will happen, how i will feel, or when a migraine or other severe pain will hit me. i cannot get a difinitive diagnosis to give ssd so my family is suffering financially and mentally cause of my pain and problems.  i hope someone can help steer me in the right direction...
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Avatar_n_tn
Dear Ronda,

I feel for you.  There are a lot of things that suggest there's something physically wrong here, although I wouldn't want to begin to speculate on what that might be.  

If I were in your shoes, I think I would make sure to see an experienced neuromuscular specialist (usually within the field of neurology) at a major university-affiliated research center.  Except there's your very difficult money situation, which may make it difficult to pay for such a referral.  I don't mean to be insensitive to that.  It's terrible.  But, just thinking of the medical issues, this is what I would do.

From what you describe there may be something going on in your muscles.  This may be due to a problem with the muscles themselves, or the motor nerves within the brain/spinal cord.   My own sense is that if you have the extreme tightness and hypertrophy you talk about, with very tight tendons (I have those), there's unlikely to be damage to the peripheral nerves outside the spinal canal.  So the focus of the investigation might go more towards looking at the muscle itself, and looking at the spinal cord.

I'm not sure exactly what you mean by hypertrophy - I mean, I know what the word means, but sometimes people use it to describe different things.  If your muscles are actually really big, that is something that is sometimes seen in the intrinsic muscle diseases.  In these cases it's called "pseudohypertrophy," because what happens is that your muscle makes more fibers to make up for the fact that many of the fibers aren't working as they should.  So, the muscle is bigger, but still weaker thhan it should be.  With nerve damage within the spinal cord, sometimes the muscles stiffen and become very defined.  Again, they don't work very well, but the person can look very "cut", because the muscles are always a little bit contracted.  My own experience, though, is that those muscles tend to be a little bit smaller, not actually bigger, although I've read some medical papers that suggest other possibilities.  So my knowledge in that area is not complete.

A lot of the bone changes you describe are those that can happen with long-standing muscle weakness, because joints depend on muscles to move smoothly and avoid arthritis.  Sometimes these bone changes can be a red herring, because they're a result of the intrinsic disease, not a cause of them.  However, sometimes bony changes can cause neurological changes, especially if there's narrowing within the spinal canal (spinal stenosis) that presses on the spinal cord.  I wonder if there's any question of this up in your cervical cord.

There are so many complicated factors that it's going to take the right specialist with the right training several hours to sort this out.  Do you belong to a church group?  If you have trouble getting a referral to a good neuromuscular specialist, and can't afford to pay out of pocket, one option is to talk to your church to see if there's some way they can support this.  Things like that are sometimes an option.  Also, many hospitals have "free care" arrangements, and you may find out you qualify.  I would first try to track down the person and medical center you want to go to, and then see what you can do to try to get it paid for (before the appointment).

To help your doctors understand your very complicated story, and sort out what's relevant from what's not, it sometimes helps to write it up concisely, in your own words.  Drawings also help, to show where on your body the pain and weakness is.  

Good luck,
Annika
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