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Old 11-25-2009, 09:06 PM   #1
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ShellBell14 HB User
MS-like symptoms but no MS? Help me, please...

Hello all,

I am a 26 year old female living in Albany, NY. Since April of last year I have had neurological issues that no one can diagnose, and that seem to be slowly affecting more of my body parts all the time.

Started out with a weak feeling in my legs durring running. Within weeks it became a general cramping, sore, overused pain that overtook both my legs from foot to upper thigh in a matter of days starting with my calves and moving upward each day. This persisted for a month or so.

Physical therapy helped to a small degree until they put me into a heated pool (98 degrees) for a couple of weeks. After that my legs felt so weak, and shaky, and I had muscle twitches all over as well as shooting pains in my hands and feet. The terrible weak feeling subsided after stopping the pool treatment. A few months later the sensation spread to my arms, neck, and back of my head all within 24 hours. Same thing..weak, sore, overused pain. It was painful to dry my hair or carry heavy objects.

Now, 4 months later, I'm having light sensitivity in my eyes, headaches, momentary blurry vision (only for a second) when switching between close and far away things (like notes in class especially). I have numbness in the front and side of my neck when holding a position for a while, my ear goes numb on the side I'm laying on at night, it gets achy inside, and I feel like I can't hear well out of it. As soon as I pick it up though, it goes away. I have strange numbness on my torso that comes and goes, and the hot water from the shower makes the skin on my back completely numb. Hot water baths give me motion sickness with some nausea, and sometimes when I'm tired or stressed I get motion sick. Stress makes it worse. Sometimes the week before my period it is worse.

I have seen two neurologists, a rheumatologist, and casually a friend who is a neurosurgeon. Noone thinks I have MS.

I have NO evidence of actual weakness (in fact I was told I was quite strong) even though at times my muscles feel very weak.

I have had blood tests for EVERYTHING you can think of..vitamin deficiencies, muscular diseases like myasthenia gravis, viruses (lupus, lyme, ect..). Chest x-rays. You name it, I have been tested for it.

Just this month I had MRI's of my brain (two of my brain on two different occasions), cervical spine, and lumbar spine WITH contrast and everything came back perfectly normal. Doctors say no MS but have no diagnosis for me. It has been almost 9 months since onset of symptoms. I have Crohn's disease.

Anyone have any suggestions? I am chronically exposed to cat dander which I am allergic to because my boyfriend has two cats. I usually always have a stuffy nose and reactions on my skin. Could this be a reaction to some type of chronic allergin exposure?

Thanks very much to anyone who read this and is thinking of responding....I am desperate to feel relief and get answers.

 
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Old 11-26-2009, 08:50 AM   #2
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22dreams HB User
Re: MS-like symptoms but no MS? Help me, please...

Shellbell--I'm sure others will have some input.
But your symptomology sounds like neurological lyme disease. well, exactly that of a number of ppl I know.

Note: The conventional tests for lyme disease only have a 46-56% sensitivity and cannot be used to rule lyme out ( a negative test does not mean that you do not have it).

It's like flipping a coin.
To be considered as a diagnostic tools, test sensitivity must be 95% or better.
(to give you an idea, conventional HIV testing sensitivity is 99.5%).

I STRONGLY suggest you pay a visit to the lyme board and ask for the name of a LLMD nearest to you. S/he'd be able to rule lyme in or out. There are other tick-borne diseases that can contribute to those sort of symptoms as well.

Good luck. and hang in there.

PS: you may want to enable your Private Messaging feature so that ppl can share information with you offline.

Last edited by 22dreams; 11-26-2009 at 08:51 AM. Reason: additional info

 
Old 12-01-2009, 02:43 PM   #3
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Kendra01 HB UserKendra01 HB User
Re: MS-like symptoms but no MS? Help me, please...

Thank you for that info. I have many of the same symptoms as ShellBell14. I have been coming to this board trying to get as much info as possible. I started with VERY weak leg muscles. They were so weak it felt as if I had ran a marathon. Later they became very stiff. After 2 and one-half years, it spread to my upper arm muscles. All along I have had EXTREME sensitivity to light. Somtimes I must wear 2 pair of sunglasses! Doctors have ruled out almost everything. I must get help. This is now so bad that I can barely change pullover shirts.

I will explore the agency you suggest. I must find out what it is.

 
Old 01-22-2010, 03:01 PM   #4
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Re: MS-like symptoms but no MS? Help me, please...

I have all the symptoms you have but i dont have a cat . I have been treated for arthuritis for 30 years. IN the past it was panful in my joints and muscles. Now I have all the symptoms you have and have suspected Ms could be the problem. if you find out the problem please share with me.
millry.

Last edited by millry; 01-22-2010 at 03:06 PM. Reason: mis spelling

 
Old 01-23-2010, 06:33 AM   #5
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Re: MS-like symptoms but no MS? Help me, please...

Quote:
Originally Posted by millry View Post
I have all the symptoms you have but i dont have a cat . I have been treated for arthuritis for 30 years. IN the past it was panful in my joints and muscles. Now I have all the symptoms you have and have suspected Ms could be the problem. if you find out the problem please share with me.
millry.
Given that you share those symptoms that are among those of lyme disease and have been treated for arthritis for 30 yrs, with painful joints and muscles, with MS being among the suspects---

please visit the lyme board to find a lyme-literate doctor near you.
Testing is deplorably inaccurate for lyme and other tick-borne diseases, so it's important to see a doctor who sees cases every day for a clinical evaluation--to rule lyme in or out.

Edit: lyme mimics alot of other diagnoses, or other diagnoses mimic lyme, depending on how you look at it.
the far-reaching affects of this disease is swept under the rug and not taught in medical schools. More research needs to be done that isn't getting done. But there are doctors who see it all the time and treat it---in it's persistent, chronic and also neurological forms.

Good luck.

Last edited by 22dreams; 01-23-2010 at 06:35 AM.

 
Old 01-23-2010, 08:35 PM   #6
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Re: MS-like symptoms but no MS? Help me, please...

Do you drink diet soda or consume products with aspartame? If so then this may be your problem. I've heard of people having MS type of symptoms that completely get better after they stopped consuming aspartame.

Another couple of thoughts come to mind have you seen the video about Vitamin D. It's called "Vitamin D prevents cancer? Is it True?" It's on Youtube.

The video is about how blood levels of vitamin D affect not only cancer but goes on to tell how research has proven that those MS is directly linked to low blood levels of Vitamin D as well.

In addition please google Multiple Sclerosis and Fungus ... there are many articles about this connection.

Hope this helps,
2nuts (2healthnuts that is)

 
Old 01-25-2010, 08:50 AM   #7
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Re: MS-like symptoms but no MS? Help me, please...

A solid integrative doctor, like the lyme doctors I've had, will consider your whole health history. They will consider viruses, other infections, dietary consumption, lifestyle, environmental exposures......

Note: Vitamin D and other deficiencies accompany many chronic illnesses.
A newer theory and research have arisen, though--

that it's the disease causing the deficiency,
not the deficiency causing the disease.
and that Vit D is evidently actually a hormone made by the body, not a vitamin.

You can look up an article/press release about a study by Trevor Marshall that raises new questions about disease and supplements. from January 2008, I believe. It explains the findings. That supplementation is actually counterproductive in the chronically ill. That our bodies try to suppress the excess Vitamin D from external sources, thereby further taxing an already compromised immune system.

My integrative practitioner (not LLMD) recommends taking vitamin D3 only because of the newer research (Marshall). It's a safer bet (which I am going with).

Another doctor still recommends high-dose Vitamin D.

There was also a study about how the introduction of oral vitamin D supplementation (+Vit D fortification in food) correlates with the marked rise in allergies over the last generation or so.

 
Old 01-26-2010, 03:05 PM   #8
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Re: MS-like symptoms but no MS? Help me, please...

Quote:
Originally Posted by WhoIsMe View Post
Hi Kendra, You sound like me 24 years ago. At that time, I was diag with MS by 3 drs. I lived 15 yrs with that diag. but do not have it. I was better for a time and then some of the problems got much worse, and got some new ones. I gave up on the doctors, had not more health care coverage, changed my career twice, changed where I lived twice, became unable to work full time, and finally unable to work at all. I ran out of energy to keep up friendships early on and am very sorry I did that. I spent every penny I had and am 1 month to being homeless.

My advice to you is keep up the fight with getting tested for everything, demand, demand, demand, and build a strong support system-- friends who will egg you on when you get frustrated and just want to stay home and cry.

Doctors say I have fibromyalgia and can do nothing. I still disagree that fibro is the primary problem. I believe no one is willing to do enough testing-- that's easy for them when I am on state/fed medical programs. Don't let any of this happen to you.
Thanks for your words of support. I will not give up. I have discovered that my mother has many of the same symptoms that I have. I have some symptoms that I have not reported here involoving skin and eye issues. I have discussed them on other threads.

I recently became aware of an inherited condition called microscopic polyangiitis. I have most of the symptoms and so does my mother!!! We have had the same symptoms but had not shared many details about them. I am investigating to see if my mother, I or both of us have it. If so, it's still bad news because there is no cure. There is some treatment, but the results vary. I just want to get diagnosed. That's the major thing.

I'll keep you posted on this board.

 
Old 06-30-2010, 06:24 AM   #9
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mskih HB User
Re: MS-like symptoms but no MS? Help me, please...

Check for Lymes disease it mimics MS symptoms is a problem all over the country now.

 
Old 07-12-2010, 09:49 AM   #10
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Re: MS-like symptoms but no MS? Help me, please...

shell,
ask them to look in to conversion disorder....your symtoms sounded just like mine...i dignoised with it on june 30th...let me know what you find out...it's a disease that where stress comes out in physical symtoms.i hope this helps.... kelly

Last edited by hb-mod; 07-23-2010 at 11:45 PM. Reason: Removed Quote. Please use "QUICK reply" rather than "QUOTE reply". Thanks!

 
Old 07-18-2010, 11:25 AM   #11
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Re: MS-like symptoms but no MS? Help me, please...

I experienced severe cramping in my feet, twitches throughout my body, widespread pain and anxiety. I think the anxiety was because I was so scared of what possibly might be wrong with me. Last August I went through withdrawl from vicoden, ambien, and zanax. These were all prescribed by my physician. I was fed up with putting chemicals in my body and went cold turkey. That's when all my symptoms began. I spent thousands of dollars going from Dr to Dr hoping someone could tell me why I was having these symptoms. They all said it had nothing to do with the withdrawl I went through. They did MRIs, Cat scans, x-rays, labs, even a brain scan and could find nothing wrong with me. Thank goodnes I found out evry thing I did't have like MS, Lupus, etc. However I still had the jerking legs, pain, etc. One physician put me on Requip for restless legs but it made my symptoms worse and I stopped taking it. Luckily I found a very knowledgable chiropractor who not only adjusted my body but spoke about the importance of magnesium and suggested I try a powerded supplement caled Natural Calm. I went to a health food store and bought it and used it that night. I was amazed! The very first night I could tell the difference. The painful cramping in my feet was much less and I was able to sleep five whole hours. I hadn't slept longer than two hours at a time since last August. It has now been one week of taking 1/2 teaspoon in the morning and one at bedtime and my symptoms have almost disappeared. I slept 8 hours last night! I am very fearful of drugs now because of what I have gone through and refuse to put anything in my body before I research the side effects. Dr.s are truly trying to help us but if they can't find a valid diagnosis they will usually say you have fibromyalgia and put you on Cymbalta or something similar. Have you checked out cymbalta withdrawls on the internet? Scary! Anyway, don't let your mind get carried away with what you might have. Try the Natural Calm (Do research on it). It might be your answer. Hope it helps you!!

 
Old 07-23-2010, 08:15 PM   #12
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Re: MS-like symptoms but no MS? Help me, please...

Ive seen the truth in what this article says. In a nutshell, there are MANY people who've been diagnosed with MS-like symptoms That dont actually have it... the cause has been identified as ASPARTAME... found in most sugar free sodas. I didnt believe it at first, but I'm a nurse and put it to the "test" on several (4)of the patients in my care and each one either completely recovered or had a great reduction in their MS-like symptoms... (one, within weeks) of cutting ASPARTAME from their diets and the other three over the course of a couple of months. How much do you drink? Good luck honey... the road you walk may be hard, but there are many good and careing people who will help you along the way... please let me know if indeed you do consume sugar free products with ASPARTAME and if you do try to put it to the test yourself (by cutting it from your diet)
By the way the toes on my right foot had been going numb off and on for several years... I read about Aspartame and cut the sugar frees... the numbness did go away... slowly at first but over time (9 months or so) it has completely gone away. Give it a try... < edited >

Last edited by hb-mod; 07-23-2010 at 11:49 PM. Reason: Removed Quote. Please use "QUICK reply" rather than "QUOTE reply". Thanks!

 
Old 07-26-2010, 01:42 PM   #13
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Re: MS-like symptoms but no MS? Help me, please...

Quote:
Originally Posted by icm View Post
shell,
ask them to look in to conversion disorder....your symtoms sounded just like mine...i dignoised with it on june 30th...let me know what you find out...it's a disease that where stress comes out in physical symtoms.i hope this helps.... kelly

I would like to be evaluated for conversion disorder, however, what kind of doctor should I see, a psychiatrist or psychologist? Won't they require me to get any medical condition ruled out first? I have had sore, tight, weak leg muscles for several years. They are a little better right now, but my arms started about a year ago and then in March I started having pain like muscles spasm in my arms. I don't have fibromylalgia or Lupus. I also had one muscle spasm in my back a few years ago that would not leave. It finally left after a year.

I'm desperate. It could be anxiety. I wish it was, because at least I could start in therapy and on meds if necessary.

 
Old 08-04-2010, 10:22 AM   #14
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Re: MS-like symptoms but no MS? Help me, please...

Quote:
Originally Posted by ShellBell14 View Post
Hello all,

I am a 26 year old female living in Albany, NY. Since April of last year I have had neurological issues that no one can diagnose, and that seem to be slowly affecting more of my body parts all the time.

Started out with a weak feeling in my legs durring running. Within weeks it became a general cramping, sore, overused pain that overtook both my legs from foot to upper thigh in a matter of days starting with my calves and moving upward each day. This persisted for a month or so.

Physical therapy helped to a small degree until they put me into a heated pool (98 degrees) for a couple of weeks. After that my legs felt so weak, and shaky, and I had muscle twitches all over as well as shooting pains in my hands and feet. The terrible weak feeling subsided after stopping the pool treatment. A few months later the sensation spread to my arms, neck, and back of my head all within 24 hours. Same thing..weak, sore, overused pain. It was painful to dry my hair or carry heavy objects.

Now, 4 months later, I'm having light sensitivity in my eyes, headaches, momentary blurry vision (only for a second) when switching between close and far away things (like notes in class especially). I have numbness in the front and side of my neck when holding a position for a while, my ear goes numb on the side I'm laying on at night, it gets achy inside, and I feel like I can't hear well out of it. As soon as I pick it up though, it goes away. I have strange numbness on my torso that comes and goes, and the hot water from the shower makes the skin on my back completely numb. Hot water baths give me motion sickness with some nausea, and sometimes when I'm tired or stressed I get motion sick. Stress makes it worse. Sometimes the week before my period it is worse.

I have seen two neurologists, a rheumatologist, and casually a friend who is a neurosurgeon. Noone thinks I have MS.

I have NO evidence of actual weakness (in fact I was told I was quite strong) even though at times my muscles feel very weak.

I have had blood tests for EVERYTHING you can think of..vitamin deficiencies, muscular diseases like myasthenia gravis, viruses (lupus, lyme, ect..). Chest x-rays. You name it, I have been tested for it.

Just this month I had MRI's of my brain (two of my brain on two different occasions), cervical spine, and lumbar spine WITH contrast and everything came back perfectly normal. Doctors say no MS but have no diagnosis for me. It has been almost 9 months since onset of symptoms. I have Crohn's disease.

Anyone have any suggestions? I am chronically exposed to cat dander which I am allergic to because my boyfriend has two cats. I usually always have a stuffy nose and reactions on my skin. Could this be a reaction to some type of chronic allergin exposure?

Thanks very much to anyone who read this and is thinking of responding....I am desperate to feel relief and get answers.
Lupus?

 
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