My story, could this be SFN? Please help!
 

Hi there all. :)

I'm kind of wondering if this is the right place for me. Be kind and read my story, and help me understand what is going on with my body.
I'm a 37 years old man.

I was previous extremely active. Lifting wheighs x5 weekly and jogging / hiking mountains 2-3 times a week. It has been this way for about 15 years.

In the fall of 2011 I started noticing painlless discomfort in both my hips, but I thought it was just my body adjusting to me recently having increased my leg training.
In february 2012 i pulled my hip during fast walking. But the injury didn't seem to heal. Instead the pain increased and went to the groin and then up to my other groin a month later. I got nasty pain in the skin and the muscles. I could barely sleep, and my hips had to avoid certain positions. Even so I tried to stay a little active. After a biking trip a couple of months later I suddenly started to rachete when I went down the stairs, the fasciculations and shaking all over started. And I started to pull muscles real easy.

It became wery bad after a while. Rubber legs (still has them), twitching, globus sensation, hip pain, hyperesthesia, neck pain, headaches, RACHETING (freaks me out), joint pain, muscle aches, fatigue in my legs, leg cramp, heavy shoulders, tinitus, light headed and a racing heart to name some. I could only stand up for a few minutes due to my hip pain, and I could only walk a couple of hundred meters.

I've never been a anxious person, but I think I've had sort of a jumpy nervous system due to me easily getting the cills and beeing sort of jumpy I guess.
Prior to this happening I've been experiensing hyperesthesia on several occations and places for several years, but I never thought about it until now. They just went away after a couple of days and there could be months between them, I thought I'd just stressed som nerves during training. I've also experienced some fasciculations, but nothing that did not stop after some hours.

I' been to 2 neurologists and 3 doctors. I've done all the testing. MRI, spinal tap x2, EMG, neurography and all the blood testing. Nothing.
I've also tested for lyme at a alternative clinic and the results were inconclusive. But I tested positive for mycoplasma pneumoniae IgG and IgA.

I lived mosly lying/sitting for almost 6 months. But then the hip pain sloooowly decreased, and I could walk around a bit more.


As for now I'm feeling a lot better, but far from ok. I twitch in my calves 24-7. But the symptoms that gets to me is the hip pain/discomfort and hip fatigue. They keep me from being active. I also have muscle aches in my hips, but the burning in my groin has disappeared. My butt feels sort of numb and so does the outer part of my thigh/hip. If I squat 15 times my hip flexors and adductors start to cramp up and I have to ease out of the flexed position. No weakness. I also have a CONSTANT burning tender feeling in the skin of my hips. This has lasted almost 2.5 years and is showing no signs of going away. I still have the racheting, but to a far lesser extent.

About 12 months ago I suddenly felt that my two outer 3 toes on right foot started to feel odd. No numbness, just different. Sadly this is still present, and soon after the same feeling appeared in both my heels a day after walking a while. This is also still present while standing up on my feet no matter which shoes I try. They feel tender. At this point I started to suspect SFN, but my neurologist has told me to forget about it because I have no signs of it. All my tests are clean. He had never seen a pure SFN and won’t give me a skin biopsy.
I also have sudden appeareces of hyperalgesia on random places of my body which can disappear after a day or two.

Obviously I've been through all the scares of MS and ALS, but I do not fear them no more. But I’m scared of neuropathy which will give me pain and disability the rest of my life.

I were positive about the improvements in my condition for a long time, but since the odd sensations in my toes/heels appeared I’ve been really depressed and anxious. Recently I’ve become more allergic to foods, and sores appear on my tounge constantly so my mouth is more or less always in discomfort.... Sometimes I also feel like I,m not getting enough air whilebreathing.


Have anybody else had signs before the disease that something was wrong? I had the occational hyperesthesia for at least 5 years prior. And I've had a stabbing pain in my right rib for just as long which could wake me up screaming. I just thought it was kidney stones or something. I also had fasciculations and buzzing on occations, but more than normal people? It was normal for me.

Now I feel like I’m at the end of the road. The neurologists say :wait and see. My primary doctor has little to offer me exept ordering new blood tests. My blood tests are fine by the way. (little low on vit D, but went up with supplements.) I feel like I can’t afford to wait and see. I feel like nerve damage is happening as I wait. Nobody has any suggestions of what to do/or what is wrong with me.

Could this be SFN? I’ve also thought about some sort of hyperexitable nerve syndrome as a cause.

Best Regards
Scandinavianmale

Welcome to NeuroTalk:

Your story is appreciated here. But I would like you to now
do it with your lifestyle added in.

PN is caused by something. Most of the time we all have to become detectives to find that cause. It may be fixable if it can be removed.

Toxins, drugs you use, hobbies and your occupation (solvents, insecticides, etc), vaccines you have received, illnesses (viral and bacterial) you may have had.

Are there family members who have nerve problems? What is your diet like? Have you had your B12 tested?
Low magnesium levels from not eating magnesium rich foods, can cause all sorts of muscle/tendon problems. Sometimes just fixing that can do wonders.

You mention racheting more than once....do you mean like a cog wheel stiff jerky motion? Racheting does occur in Parkinson's disease. Or do you mean a clicking sound which may be tendons snapping or joint air bubbles clicking.

I assume you have had Xrays of the hips to show arthritis or joint deterioration?

Welcome Scandinavianmale. :Wave-Hello:

Thanks for a fast reply :)
I work as a physical therapist, no toxins as I'm aware of in my inviroment. No drugs, but have been drinking alcohol (party) once a week for the last 17 years. No smoking.
My last vaccine was before a trip to Mexico in 2008. (hepatitt A I think)

Had a bacterial infection in a elbow at 15 which was cured with antibiotics.
Shortness of breath for a long period about 2002 which they found no reason for. This was prior to a trip abroad and a following bronchitis.

No nerve problems in my family at all. I've always had a good diet (but these days who knows what a good diet is?). Tried Paleo 6 months this year ( a doctor suspected fungus overgrowt....) my hyperesthesias became better I think. But not for sure. Now I eat mostly paleo (fish 4-5 times a week), but have the occational gluten/dairy/wine slip up.

By racheting I mean a trembling movement. No stiffness like PArkinson, no clicking. Just unable to extend my joints without them trembling. My knee would shake while going downstairs, but this have become much better! :)
These days the racheting only very visible while doing a exentric abduction movement in my hips. (It's a workout machine at my job :) )

My B12 were 357 pmol/l on 18/04/2013 now above 600 (supplements).
My magnesium were 0.87 mmol/l on the same date.
Vitamin D were 29 nmol/l. (Now higher due to supplements)
I,ve been tested for led/cadmium/mercury. All fine.
HS-CRP 0.21 mg/L

My joints hips just fine, x rays and MRI were taken when the pain was at its worst.

Hi and welcome. My pain started in my hips 6 years ago. I have found out that I was taking a ten day course of Avelox (fluoquinoline) when it started. You may want to research to see if you were taking any medications around the time this began.

Hi hopeful.

Thank you for your reply. :)
No medication when the body went bad. No meds now either.....

Regards

Do you use any supplements at all?

With the drinking there would be a strain on B1 specifically.

Also your B12 is not great.... you convert to pg/ml at 483.
this is a conversion chart for non conventional units(SI) to conventional units in US pg/ml.
http://www.globalrph.com/conv_si.htm

The new low normal is considered 400 today. So you could well
do to take an activated form of B12 to see if you improve some.
This would be methylcobalamin 5000mcg/day...do this for at least 3 months and get retested and see if you are noticing any improvements. Do this on an empty stomach, as food impairs absorption which is very low to begin with.

Since you were so active your physical needs for magnesium would be large, and the alcohol use would deplete it. So a good absorbable form of magnesium either thru food choices or a chelated supplement form (not OXIDE which does not work)... may help with many of your tendon/muscle problems.
Examples of chelated are, gluconate, glycinate, citrate, taurate, malate etc. 200mg of elemental a day is 1/2 of the average intake modern people consume.
This site gives food choices:
http://www.slowmag.com/

B1 can be either Thiamine 300mg a day in divided doses, or 150mg a day of Benfotiamine if you can find it where you are.
This will help with your alcohol use, as thiamine is needed to metabolize alcohol properly. It would really be best to see if you stopped completely the alcohol and noticed changes. This might take 6mos or longer to see.

These 3 things to start based on your posts, may help your body some. You can always do more, but starting slowly with the most likely needed nutrients, is often best. You can read here about the various supplements, but you don't need them all at this time.

Did you get thyroid testing? That could prove helpful too. There are environmental pollutants that affect the thyroid metabolism.
These are new problems, and are mostly in our water and are
fire retardants. You could be absorbing them from your sofa or bedding every day! Formaldehyde is in many new buildings, and leaches into people that way.

There is a disease called polymyositis (and also dermatomyositis) that affects the proximal muscles and weakens them. That would be the thighs and upper arms.

More information here:
http://www.medicinenet.com/polymyositis/article.htm

Often finding a solution is difficult... so hang in there.

Haha...I sound like a raving drunk here...... I'm actually not:o A little party in the weekend was what we did. Everybody did it. But I guess some 17 years with it and training like a madman could be a bad combo.....good thing I finally got a little son & a fantastic girlfriend to make me set my priorities straight!

Thyroid tests all good.

5000 mcg a day is way more than I've been taking. I've been taking perhaps 4000 mcg a week. But my B12 has been rising.
I've been taking the OXIDE magnesium, time to order new supplements.
I've actually been taking Benfotiamine 150mg, but not daily.
I've also been taking acetyl-l carnitine, r-lipoic acid, resveratrol, alpha-lipoic acid, omega 3, and q10. I tend to forget them a lot though. I think I forget them because I'm at heart really don't think they will cure me....:( But I will give it another go.

I've checked polymoisitis, but don't think it really fits.
But I've recently been checking sarcoidosis and want my doc to check into it due to my previous history of breathing issues. As far as I've read, sarcoidosis can give a spectre of nerve symptoms.

Thank you for your time and advices.

Best regards

Okay.. working towards the baby is a good goal to have.

The other supplements you have are good....but if you take everything together, then it clouds your results that occur, and you won't know what is working and what not.

Magnesium is very powerful. Just that one can do wonders.
So take the Benfotiamine daily.

And B12 in a high amount--make sure on an empty stomach--
your choice of dose, every day.

I'd stay away from the alcohol for a while. You may be able to reintroduce it much later...but it confounds the whole supplement thing.

I like to see newbies start slowly, so you can see what works, etc. The other supplements will always be there to add in one at a time.

Sarcoidiosis is diagnosed with an ACE blood level. So you can ask for that.

I will echo what Mrs. D says--
 

--I suspect that B12 level may have some thing to do with this, as symptoms of B12 deficiency can mimic many other things.

I DON'T think this is an isolated small-fiber neuropathy. A small fiber neuropathy would affect sensory and autonomic functions, but, by definition, it would not cause muscular symptoms, as the small unmyelinated fibers underlie the sensory sensations of pain and temperature and many autonomic functions--they donot enervate muscle. But B12 deficiency can cause problems with both the peripheral nerves and the spinal cord, and given the variety of symptoms reported, it does sound as if you may have some spinal involvement. This could possibly be enhanced if there is any compressive forces in the spine or along the spinal nerve roots (have you had full neck/back MRI for disc bulges/herniations?--you are, after all, working a very physical job).