For the last 7 years I've had symptoms that I think point to MS. First I'll describe my symptoms, then my doctor appointments and tests.
It started one night with leg spasms. After a couple hours of it getting worse and spreading I went to the hospital. It was full body spasms by then. I was given what I think was a muscle relaxant (was never told). It eased the spasms and I was sent home with no instructions or follow up. As soon as the meds wore off the twitching started. This lasted about 3 days. Soon after that I started getting weakness in my legs that would come and go. This is what I think of my first "flare" after this I would have spasms that would come on but only last a couple hours, same as the leg weakness. Saw a Nero (more about that below) and nothing was found. Got pregnant and symptoms disappointed until almost a year after giving birth. The leg weakness and spasms came back, but only for a couple hours each time. I began to get a noticeable tremor. Went to another Nero, results were fine.
Then I had was second "flare" back in March. My eyes kept rolling back in my head and I was really dizzy. Lasted around 3 days. Was given meds that helped. Since then My eyes will roll back but only for a hour or two. I had one night where I could barely see because they kept rolling. A month later my foot started to drag when I walked. Lasted a couple weeks. Now I'll have random times where it drags. Last 4 months I've had symptoms that come and go throughout the day. Those are dizziness and tiredness almost feels like a fog. An almost electrical energy feeling in legs in arms almost like a zinging sensation. I can go days with barely eating, keep losing weight. Gone from 170 to 125. Daily morning pressure headaches. Pressure points that hurt: front and back of hips, bottoms side of ribs, thighs, between shoulder blades. I also can't bend head forward in morning fully, and when able to get shooting pain. Last month I've gone from always sleeping to barely able to sleep. There's a feeling of pinching nerve in lower back that travels down my right thigh. There's more symptoms but that's the worse of it.
Now to my doctors and treatment:
1st Nero did brain MRI, spinal tap, EMG. All came back clean. She was able to help with migraines. Told me there was no other tests that she could do sent me back to GP.
2nd Nero did a spine MRI and another EMG. Came back clean. Told me there was nothing nerologically wrong with me. When my symptoms started again and my GP sent me back to her she got mad and said I already said nothing was wrong with you. She sent me to hip specialist who said I had perfect hips (yay!)
3rd Nero: sent me me EVP, EEG, and another EMG. When these came back negative, he decided I have conversion disorder. Even though he has no new scans, my spinal tap wasn't checked for MS. I feel that there are so many other things to check for before throwing out a CD diagnosis. I asked him about getting an MRI with contrast since I've never had one, and was told contrast won't change anything.
Could this be MS?
Re: Could this be MS?
Hi,
I think you have something going on.
Did they do an MRI of your spine and what tests did they do to see if your muscles are hypertonic (stiff)?
I think your descriptions of where the pressure points are very easy to identify with. As to what triggered this is harder to determine.
Having gone through all this and got out of it, some of these problems have a physical cause. The tightness in the front of the hip suggests you are tight in the iliopsoas and its probably pulling the pelvis out of alignment. The pain around the lower part of the ribs can be related to the pelvis alignment as well but it can also be tied up with tightness in the psoas. If the thighs are sore, I am assuming you mean the front of them. That would probably be caused by the tightness already mentioned forcing your quads, hip flexors and TFL to work without the iliopsoas assisting them. A clear sign of that would be a change in your gait. Does one leg seem to scribe an arc rather than just moving up and down when you walk? If the backs of your thighs (the hamstrings) feel tight or your walk with a stiff or straight leg then the periformis could also be tight. If the periformis is tight it will pinch the sciatic nerve and refer pain and cramps as far down sides of the calf and into the foot.
The pain between the shoulder blades is significant. That's where many of nerves that bundle under your shoulder blades and travel down your arms start.
The muscle to think about that is wrapped around the spine is called the multifidus. If that goes to sleep (a common problem) because you have spent a long time sitting in front of a computer or just sitting then you end up with a stoop or curve in your back. If those lower muscles I've already mentioned are tight and your multifidus has switched off then you will have all kinds of problems.
What to do just for muscle mobilisation alone - a) start going to a small pilates class so you get individual attention b) get a lot of massage and expect it to hurt.
These are some videos of what I think you should be looking for
- for the shoulder blade and neck issue get a massage that includes this
-for your iliopsoas see a physio who can do a Thomas stretch -
- the Periformis can be released (if its not bad) by a Pilates instructor but in your case I suspect you need a cortisone injection into membrane over the periformis. If that's the solution then you will overjoyed with the result
- the multifidus is easy to wake up http://www.pilatestonic.com/2013/the-am ... ultifidus/
The real problem, of course, is what is causing all these muscles to tighten up.
The first step is to forget about a term like MS and go looking for underlying infections. Get a test for EBV, mycoplasma, rickettsia, bartonela, babesia and anything else your doctor can think of. Do blood, urine and bowel tests. Look for anything that can cause inflammation. Hopefully you have very few. You will probably test positive for an old EBV infection but it has strong correlations with MS. I have taken Valacyclovir for EBV for many years because of that. I know it helped with the brain fog in my case but a lot of doctors wont prescribe it because they confuse antibiotics with antivirals.
If you have all those muscle groups I mentioned tightening up it would suggest that the oxygen supply to them is somehow compromised and you are experiencing ischemia. i.e. The blood doesn't carry enough oxygen to meet the need. You didn't mention fatigue so that suggests a good prognosis. Get your blood pressure and ejection fraction from your heart checked. Not vasodilating properly can cause low flow ischemia. Supplements such as L-Arginine, Co Q10 and aceytl-l-carnitine plus foods such as dark green leafy vegetables, beetroot juice etc can all help this.
I would read the "Sinatra Solution :Metabolic Cardiology" if you are thinking about that path.
Sinatra talks a lot about ATP. Get a uric acid test (not urea) to check if you are losing purines. If you are, then you wont have enough ATP to trigger the breakage of rigor bonds developed when muscles contract so they can be released.
Expect not to get better if you don't do Pilates several times a week. Expect the Pilates to not always work if you don't get massages.
Hope that helps.
Regards,
I think you have something going on.
Did they do an MRI of your spine and what tests did they do to see if your muscles are hypertonic (stiff)?
I think your descriptions of where the pressure points are very easy to identify with. As to what triggered this is harder to determine.
Having gone through all this and got out of it, some of these problems have a physical cause. The tightness in the front of the hip suggests you are tight in the iliopsoas and its probably pulling the pelvis out of alignment. The pain around the lower part of the ribs can be related to the pelvis alignment as well but it can also be tied up with tightness in the psoas. If the thighs are sore, I am assuming you mean the front of them. That would probably be caused by the tightness already mentioned forcing your quads, hip flexors and TFL to work without the iliopsoas assisting them. A clear sign of that would be a change in your gait. Does one leg seem to scribe an arc rather than just moving up and down when you walk? If the backs of your thighs (the hamstrings) feel tight or your walk with a stiff or straight leg then the periformis could also be tight. If the periformis is tight it will pinch the sciatic nerve and refer pain and cramps as far down sides of the calf and into the foot.
The pain between the shoulder blades is significant. That's where many of nerves that bundle under your shoulder blades and travel down your arms start.
The muscle to think about that is wrapped around the spine is called the multifidus. If that goes to sleep (a common problem) because you have spent a long time sitting in front of a computer or just sitting then you end up with a stoop or curve in your back. If those lower muscles I've already mentioned are tight and your multifidus has switched off then you will have all kinds of problems.
What to do just for muscle mobilisation alone - a) start going to a small pilates class so you get individual attention b) get a lot of massage and expect it to hurt.
These are some videos of what I think you should be looking for
- for the shoulder blade and neck issue get a massage that includes this
-for your iliopsoas see a physio who can do a Thomas stretch -
- the Periformis can be released (if its not bad) by a Pilates instructor but in your case I suspect you need a cortisone injection into membrane over the periformis. If that's the solution then you will overjoyed with the result
- the multifidus is easy to wake up http://www.pilatestonic.com/2013/the-am ... ultifidus/
The real problem, of course, is what is causing all these muscles to tighten up.
The first step is to forget about a term like MS and go looking for underlying infections. Get a test for EBV, mycoplasma, rickettsia, bartonela, babesia and anything else your doctor can think of. Do blood, urine and bowel tests. Look for anything that can cause inflammation. Hopefully you have very few. You will probably test positive for an old EBV infection but it has strong correlations with MS. I have taken Valacyclovir for EBV for many years because of that. I know it helped with the brain fog in my case but a lot of doctors wont prescribe it because they confuse antibiotics with antivirals.
If you have all those muscle groups I mentioned tightening up it would suggest that the oxygen supply to them is somehow compromised and you are experiencing ischemia. i.e. The blood doesn't carry enough oxygen to meet the need. You didn't mention fatigue so that suggests a good prognosis. Get your blood pressure and ejection fraction from your heart checked. Not vasodilating properly can cause low flow ischemia. Supplements such as L-Arginine, Co Q10 and aceytl-l-carnitine plus foods such as dark green leafy vegetables, beetroot juice etc can all help this.
I would read the "Sinatra Solution :Metabolic Cardiology" if you are thinking about that path.
Sinatra talks a lot about ATP. Get a uric acid test (not urea) to check if you are losing purines. If you are, then you wont have enough ATP to trigger the breakage of rigor bonds developed when muscles contract so they can be released.
Expect not to get better if you don't do Pilates several times a week. Expect the Pilates to not always work if you don't get massages.
Hope that helps.
Regards,