MS, ALS?

[ninajss]

GB removed in 5/09. In June, thought I had bilateral shin splints from trying to get back into exercising as every time I did, both calves hurt and hips and buttocks as well. At the end of June had bilateral calf pain, which I went to the ER for. Told I had hyperreflexia, + Hoffman and clonus. MRI of my brain (normal) MRIs of my back showed cervical bulging, herniations indenting cord at T5-6 and T2-3 with L5-S1 bulge with annular tear. I had 4 EMG/NCVs with the first on July 2/09 showing mild right carpal tunnel, the 2nd on July 16 showing polyphasic with normal motor recruitment in extensor hallucis longus consistent with mild L5 radiculopathy. 3rd done at John hopkins on 07/28/09 of 3 extremities was normal. 4th done 9/1 of 3 extremities and was normal. Skin biopsy for neuropathy and spinal tap were normal. Blood work normal. During this time pain I had in my calves had moved up my body with severe bilateral leg burning and tingling, I thought I would go in sane. I developed horrible burning groin and rectal pain with pain on bilateral buttocks and underneath & diminished sensation when having to use bathroom.  Toes go numb and tingling when I sit at all.  For 2 months I have had widespread muscles twitches in legs, feet, hands, face, back, chin arms & abdomen. Hands very stiff and neck is very sore.  I think I see atrophy in my feet and hand, but am not sure.  Three neurologists said I dont have ALS. My symptoms getting worse I am terrified.  I saw 4 surgeons who said the leg symptoms could be from the T5-6 herniation but not arms. I have facial tingling and it will feel tight.  I know ALS is not sensory and I try to keep that in mind as this exacerbation started with the bilateral pain.  When flex my feet I feel pins and needles in big toes.  Have pins and needles in feet on bottom when I walk.  I am going to go to the Mayo clinic because I dont know where to turn. Does this sound like ALS or my back?  I had aches and pains before and I remember that several months before this I felt like muscles were tight, but I thought it was from exercising. I am scared I have ALS and it is just too early for it to show on EMG.

[ninajss]

No they didnt comment on the cord.   I have had everything but a colonoscopy.  I am so deathly afraid of ALS I am ready to go nuts!!!  I have had 4 emgs with the first July 2 and the last Sept 2 with all being normal except one july 16 showing radiculopathy.  My symptoms are worse and are centered in my rectal and groin area with horrible burning but twitches widespread and I feel like I am not using my hands and feet right.  I have no idea what to to do now.  

Nina

[Fluffysmom]

Hi, when they did your spinal tap, did they do a Western Blot test for Lyme Disease?

When they did MRIs of your spine, did they say that the cord appeared normal (no visible lesions)?

I have lots of nerve pain.  I have lots of bulging disc and a lumbar spine that is full of annular tears and one disc protrusion that causes some radicular pain occasionally.

About a month ago, my entire right side from the bottom of my rib cage to the tips of my toes started burning with crazy-making pain, that I recognized as nerve pain.  This was beyond what could be caused by my low back protrusion; the entire leg was encased in pain.  After a week or so, my right arm started burning, too.  I also had twitches in my right eyelids that felt creepy.

I had a prescription of Tegretol that I got for my Trigeminal Neuralgia, and took some of it, and it helped a little.  I went to see my PCP, and she suggested upping my dosage.  I don't have a new neurologist yet; he'll be my 4th when I see him in October.

I do have lesions in my brain, and some possible lesions in my spinal cord; the radiologist and neurologists couldn't agree on anything.  I'm hoping the new guy will help.  

I have tremors; the symptom that sent me for my first brain MRI over a year and a half ago.  They started in my hands, arms, trunk, then I had trouble walking straight, and more. Enough about me.

I understand the overwhelming pain and weird stuff going on with the body that can make you feel like you can't stand it any more.  I've busied myself with learning as much as I can (this is a wonderful place to get information; have you read the Health Pages?), and keep trying to find the right neurologist that can help me figure out this puzzle.

I don't know where you're located, but I've heard that NYU has neurologists and other doctors that are excellent at figuring out what's going on with our bodies.  I'm on the West Coast, so I haven't been there.  Yet.

Best of luck,

Kathy

[ninajss]

Thanks for the info.  I will keep it in mind.   I am very scared but part of me really does nto think that ALS causes deep rectal burning pain that extends to buttocks and then below the buttocks.  Nor do I think that ALS causes you to feel like you have rain drops falling on feet when there is none.  That is 100% sensory.  It started with teh bilateral pins and needles in calves and that isnt ALS either.  I am so tied of worrying.  If I did nt these twitches I wouldnt be fixated on ALS.  I cant believe that 3-4 neuros are all wrong.  May one one but not 4 in 3 months.  Thsi seems more like Parkinson's with a tremor.  Something is wrong I just need to find out what it is.  Ant other ideas?

Nina

[MsWobbles]

Hey - If you go to Mayo, try the one in Jacksonville even though it is smaller. Because I was visiting family in that area, I just went in and spoke with them there but, unfortunately, I decided to be seen at the Mayo in Minnesota  - a place which I cannot recommend.  I was essentially blown off there, becoming merely learning experience for one of their student MDs.  The people at the Jacksonville Mayo seemed way more concerned and would have been more thorough investigating me for ALS.  The head ALS MD at Jacksonville MAYO partnered in the creation of a very helpful device to prolong breathing by stimulating the diaphragm in ALS patients.  Forget the big MAYO in Minnesota - a major disappointment!

As for ALS not being sensory - that's not exactly true.  It may say that in the medical textbooks (just as those textbooks used to say that MS did not involve pain - which we know is not true).  I have heard complaints of numbness from people who have ALS.  So ALS can, indeed, involve sensory.  

Also, be advised that people can have several negative EMG/nerve conduction studies and still have ALS.  Why?  Because to be a thorough study, the test should last several hours (because there are so many muscle groups to test) but the reality is that most EMG/nerve conduction tests done today are about 40 to 60 minutes long which is not long enough for a valid test.

I am aware of some people who were given wrong diagnoses of Parkinson or Multiple Sclerosis who later ended up diagnosed as having ALS.  The three conditions are so similar!!  

If you have MS lesions showing up on your MRI, then you can probably be sure of what you have.  Also, I don't think Parkinson or ALS are affected by heat as MS is.

Good luck to you in what you decide, but I would suggest reconsidering MAYO (as in "hold the MAYO!").  Some people on this website have not had great experiences there trying to have their MS confirmed and I am even aware of one person who LOST her MS diagnosis at MAYO!

And once Mayo has declared you do not have MS or ALS - that may influence any other physician you see in the future regarding a diagnosis for you.  They may automatically assume MAYO knows what they are doing and are correct in their assessment.

WAF

[Wobbly]

sorry can't help with this.. good luck at the Mayo clinic, let us know what they say?

take care
wobbly
dx