Clutching at straws?!

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Clutching at straws?!

Postby VickyBEE » Sat Jun 26, 2004 5:09 pm


I've been suffering right hip pain going down the outside of my leg, right knee pain going down the outside of my leg, lower back pain, painful hands and wrists going up the outside of my forearm. The pain doesn't seem to be coming from the joint more like the muscles either side. Over the last week or so I have developed a 'twitch' over my left cheekbone, it seems to be worse when I am tired or stressed.
My hip pain stops me from lying on my side in bed which means I've got numerous layers of padding on my bed and I still can't sleep!! It is a kind of cramping sensation that I have to stretch out, gently!
I've been going to various Dr's for the past 7 years (mainly Rheumatoid, Musculo-skeletal etc) with no diagnosis. I am getting increasingly frustrated with trying to put my symptoms together, I would like to know what anyone thinks, I don't really fancy being told I have MS (who does!) but if I can finally get a diagnosis I'll be satisfied. Any views would be appreciated.



Postby OddDuck » Sat Jun 26, 2004 6:22 pm

Hi, Vicky!'s probably too hard for any of us to say or even give an opinion on. The symptoms you describe could be from any number of reasons.

Have you seen a neurologist? Particularly an MS neurologist, if regular neuros and RA specialists, etc. have ruled out most other diseases? Have you had any tests such as an MRI, lumbar puncture, or evoked potentials?

Unfortunately, sometimes it does take years to be definitely diagnosed, especially when it's neurological.

Hang in there. I can relate. It took over 40 years before I was finally diagnosed. (Of course, that is an extraordinarily long time.)

All the best to you!

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Postby VickyBEE » Sun Jun 27, 2004 2:44 am

Thanks Deb,

40 years!!? I'd better be patient then!

I recently saw an Orthopeadic Specialist and had fresh x rays of my hips and lumbar spine, he said they showed no structural abnormality but that on examination there was evidence of some nerve irritation (right leg reflexes in heel were diminished). He has referred me for an MRI of my lumbar spine/hips but this hospital has a waiting list fior MRI's of about 18 months!
If I have a trapped nerve in my right SIJ that could account for my pain in my right leg but it wouldn't be an answer to the pain in my right hand/wrist or my right shoulder pain/stiffness or this twitch in my face. However each pain is similar in that it starts at the outside of the joint and tracks up the outside of the limb, is this common in MS? My Rheumatologist said that I should have symetrical symptoms for it to be RA or similar.
As you can tell from my wafflings, I am a bit confused about which specialist I need never mind a diagnosis. Any doctors out there?!


Postby Felly » Sun Jun 27, 2004 3:57 am

Hi Vicky,

It could be number of things - many less serious than MS. I always tend to apply the principle of Occam's razor -if there is more than one explanation go for the simplest first. And definitely tell your doctor that you fear you may have MS, if he or she doesn't know how you feel then they are not going to look in the right places or be able to reassure you this is not the problem.

1. As this has been going on (without a break?) for 7 years I assume you have had blood tests to check your C-reactive protein levels and rheumatoid factor? These should give an idea of what is going on rheumatology wise and with a number of other conditions.

2. Have you been checked for TOC or brachial outlet syndrome? These could have some bearing on upper limb pain, wrist and shoulder. And how we hold ourselves due to pain then impacts on other parts of your skeletal system. Especially the hips, which take much of the stress.

Is it purely pain or is there any numbness in the wrist. Have you been checked for ulnar nerve palsy or carpal tunnel syndrome? All these things can cause the type of pain you describe. If you haven't had them checked get it done.

3. Twitches - can develope for all sorts of reasons- especially if you are tired or stressed. Sometimes purely because you are tired and/or stressed. Also when we are stressed and tired our tolerance of pain goes down.

4. Vicki, you don't say how old you are so don't take this the wrong way but from personal experience I know once I got in to my mid thirties I started getting all sorts of little strange things happening and they had nothing to do with MS - just getting older.

5. You don't mention what kind of pain appears to be coming from the muscle. When you feel the muscle is it lumpy or smooth? If it is lumpy it could be fibrositis.

You don't mention if this pain came on suddenly or over a period of time. I suggest you keep a diary of the symptoms and a synopsis of how they started - overnight, after excercise -sometimes pain can come on weeks after excercise so we don't associate the problems as starting with this. Think about whether the pain has been consistent or intermittent. Have you had periods of fatigue or tiredness without having done anything to merit this. Give this information to your PCP and tell her/him what you fear.

You ask if the type of pain you experience is common in MS - I don't think anyone could answer that questions 100% as pain is experienced in different ways and MS has a multitude of types of pain. No one person experiences MS in the same way, although there are commonalities. Some people get very little pain, others a lot of pain. Can't say I have ever experienced the type of pain you are describing - my experience is that it can be incredibly random and have very little pattern to it- but that in itself doesn't make it any more or any less likely to be MS in your case.

Very few people have perfect reflexes and lots of things can cause nerve irritation. To find out/get reassurance speak with your doctor and if you are still not reassured insist on a referral to neurologist

Finally, an MRI of just your lower spine will not be much use if MS is what you fear.
I suggest you ask to get the tests done that Deb suggests - MRI of brain as well as spinal cord, evoked potentials, as well as the tests to rule out other conditions.

Hope this is of some help, in terms of what to tell the doctor etc.

Good luck,
Last edited by Felly on Sun Jun 27, 2004 5:16 am, edited 1 time in total.
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Postby OddDuck » Sun Jun 27, 2004 5:06 am

Well said, Felly!

Vicky, Felly's post is a perfect example of the numerous possibilities for what you have been experiencing. As was noted, there are so many tests that could (and probably will) be done in the attempt to narrow down what might be going on.

I also support Felly in suggesting that you start out with the simplest explanations and only lead yourself up to a disease like MS after other causes have been ruled out.

Keep us posted, Vicky. That's unfortunate that you have to wait so long for an MRI!

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Re: Clutching at straws?!

Postby willysnout1 » Sun Jun 27, 2004 12:08 pm

Vicky, no one here is a doctor and therefore you cannot get a diagnosis on line. All we can do is speculate, so be sure not to take my comments or those of anyone else as anything but speculation. All of this goes double for anything related to MS, because all of the symptoms of MS are seen in a very wide variety of other problems.

If you want to be checked out for MS, I suggest that you start by contacting your nearest MS Society chapter and asking for a referral. You'll get the names of a few neurologists known to them, and it will probably take you a couple of months to get an appointment. This is how I've gotten my neuro referrals in Boston and lately Seattle, and I have been very satisfied. Even those who are dissatsfied with the National Multiple Sclerosis Society (I am not one of them, by the way) will agree that the local chapters are usually excellent.

Suggestions on the neuro appointment:

1. Arrive with a written list of symptoms. Make it concise. It should fit quite comfortably on one sheet of paper. My MS symptom list runs for a half a page, consisting of bullet points.

2. Be as unemotional and as rational as possible. Doctors are scientifically trained from years on end. They respond most readily to the factual, measureable and provable. This makes MS a tough one, because it usually starts with sensory symptoms. An emotional patient reporting sensory symptoms runs the considerable risk of being dismissed as psychosomatic.

And that's more likely to happen to women than to men, although you must believe me when I tell you it happens to men as well. I once sat in the office of one of the top MS neurologists on the East Coast, unable to feel anything below my chest, and was told that I was imagining things.

3. Present yourself as looking for answers, but don't mention or suggest MS. If the neuro has been recommended by your local MS Society, you can rest assured that he or she will consider the possibility without your mentioning it. I say this because doctors really distrust "self-diagnosis."

4. The bottom line is that it's up to you to determine how confident you are in your doctor. If you think you're being blown off, then for God's sake find another doctor! But remember, you eventually have to believe someone. If three top neuros tell you that it's not MS, then it's probably not MS. In any case, once you've developed that confidence then be sure to listen to what you are told.

And guess what? Sometimes they don't know what the problem is. Frustrating as that is, I think it's better to be told that they don't know than it is for them to just make something up! With MS, a lot of people will be told that the picture is ambiguous and that they should come back in six months. It's frustrating as hell, but if that's what you hear it's the truth so don't consider it a brush-off. Even with MRIs, mutliple sclerosis remains a difficult disease to diagnose.

5. Obtain copies of all your medical records, including doctor notes from visits, blood test results, x-rays and MRI films. Keep a medical file at home.

If the neurologist does suspect MS, the first step will be to get MRIs of your brain and cervical spine. Be sure that these MRIs are done in an enclosed MRI. Open MRIs don't yield good enough images. If you're claustrophobic, have them give you a sedative. Beyond that, be sure that they use a contrast agent, which is typically gadolinium.

If the MRIs show spots, you'll likely be asked to do evoked potentials (EVP) tesing and/or a spinal tap (also known as "lumbar puncture" or LP). EVP tests involve looking at shifting patterns to see if the nerve impulses from your eyes are getting to your brain quickly enough, and giving you small shocks on your arms and legs to see if the impulses are reaching your brain quickly enough.

An LP involves putting a hollow needle between your vertebrae and extracing about 15% of your spinal fluid, which is then checked for byproducts of myelin destruction and other diseases. An LP is uncomfortable but also bearable and routine. Think of a cavity being filled, and that's the typical level of discomfort. Here is a discussion of spinal taps

Here's a place where you can read the diagnostic criteria for MS. Frankly, the symptoms you describe do not sound like MS to me. The predominance of pain suggests mechanical problems, although the "cramping sensation" sounds like the description of a spasm and painful spaticity is a pretty common MS symptom.

Bear in mind that very few MS diagnoses are rendered from symptoms alone (i.e., "clinical history"). MS usually takes quite a while to be diagnosed, so don't expect an instant verdict from anyone. Also, the Internet is a double-edged sword. It's a great source of information but it's a way to scare the hell our of yourself, and it tends to obscure the hard fact that any diagnosis of anything must come from a doctor rather than someone on-line.

I truly wish you the best of luck in the search for answers. I've been in your shoes, and I know it's not easy. It is especially hard to have people tell you it's all in your head, caused by stress, and treatable with herbs or alternative medicine. Some quacks will even claim to have discovered a cure for MS. Unfortunately, there are no shortcuts. Hang in there!
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