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hopeful123

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Hi everyone,
I am so glad to have found this site and hope to get some good feedback. I guess best place to start is with medical history. Last year Iwas diagnosed. with bulging disc @ L5-S1 w/ siatic pain in rt leg. Have had epidural injection and nerve block to that area in spring of this year. Also @ time of diagnosed was having weakness and numbness only in rt leg(this was last fall "06"). Start triping over things and hving difficulty lifting rt leg to pu on pants. Just blew it off to my age which was 39 @ the time and the bulging disk. By November of "06" began to have severe muscle cramps (Daily), in feet and both legs. No fasciculations @ this time. MD put me on Quinine as needed for cramps. Only took it when cramps were endless and lasting 30-60 mins. Ended up in ER on Dec. 23, 06 with temp of 105 and not responding to fever reducers. Had taken Quinine night before after numerous lab test Md came w/ possible allergic reaction to Quinine. This spring started having muscle cramps in rt hand w/slight weakness, Cramps progressed to shoulder. Md ordered cervical MRI should 3 bulging disc and several shallow disc bone spur complexes. Just finished epidural injections in cervical spine w/ nerve bloc and next week will have rfa done in cervical area. Aprrox. 1.5 months ago Pain Md suggested I see GP for further testeing b/c now having cramps in all 4 extermities inculding neck muscle, also began having fasciculations late summer in feet and lower extermites. At first worse in rt leg but now just as equally in both lower extermites. Late Sept. went to see GP who referred me to Neuro. Approx 2nd week in Oct. saw Neuro who said saw somw minor problems but not that significant. deep tendon reflexes extermly brisk, he said his were brisk not to worry. Balance slightly off on exam but he said this was also not terribly concerning to him. I told him Iam now having difficulty going up and down stairs without becoming off balance and that when I try to run I ended up on the ground. Its like my legs won't go where I tell them to. Now starting to have balance issues when I get out of bed in am. Have to hold on to something while walking after a few minutes it gets better. Stll doing well w/ hands although cramping is becoming worse in upper extermites now. Had EMG and NCV yesterday, my normal Neuro was on vaction so saw his partner. NCV was normal, he wated to reschedule EMG so my primary neuro could do the test, really never got answer as to why. I pushed to have it done, b/c I have 3 school age childeren and work part tim, so scheduling was a issue for me. He statet he saw somw abnormalities on the rt leg but felt it was not pointg toward als and I neede to schedule follow up w/ my primary neuro to go over results. He stated that I appear to be in good phiscial condition and should not be alarmed by results. I asked for some muscle relaxers for cramps and he stated we needed to hold off until further testing. A little confused why I have to suffer w/ these muscle cramps. The Fascicultions don't hurt just anoying::-D. My husband had to help me off the floor last night. Because I lost my balance after tring to get up from the sofa. Things that have been def. ruled out MS, no electrolyte problems, and lupus. One other symtom started having in Sept. was intermitent difficulty swallowing liquids still not a huge issue. Now tha I have given you all the scope on my health, my questions are, What should the EMG results show if ALS is a possibility, Also can theses problems be coming from spinal issues. When and if should I seek a 2nd oppion. What other test should I ask for and what questions would any of you recomend @ my Dec. 3 visit. What should be a red flag that MD is not taking my symptoms seriously.
Sorry:( this was so long, but felt it best to give the whole picture. Thanks to all who take the time to read and respond to my post.
Hopeful123 :)
 

crystalkk

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Hi hopeful,

Hang in there, this Nuero stuff takes along time. Alot of us are going through the same thing.

I'm not a doctor but can I ask a few questions?
I went thru the whole thing with my back as well and did an awful lot of research.
Was refered to a surgeon in the being of my situatuion for my back. I am not diagnosed with anything yet.
Did your lumbar or cervical MRI just say the disc's were bulging. Did it say anything about foraminal stenosis
(which means it is hitting a nerve root). Did it say anything about central stenosis (which means it could be hitting the spinal cord).

did they do a spinal tap as well as brain mri to rule out MS?

What kind of nuero are you seeing? Does he specialze in Nueromuscular diseases.

If you are really worried about als you should look up the closest als specialist or MDA in your area
they see it everyday.
 

hopeful123

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Hi Crystal,
Thanks for the reply. To answer your questions, no stenois seen on spinal MRI and have not had brain MRI. As far as my neuro unsure of his specialty but will find out. Just starting with this process, and not trying to scare myself. Not typical of me to worry about illnesses tend to put things off until I feel really bad. Just want to be informed so as to Know what to ask about next MD visit. Your suggest are very helpful and will definitely ask about them.
Hopeful
 

Just J

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Hopeful, hopefully your diagnosed will not be a MND. Hang tight and take a deep breath though as it takes a long time to be diagnosed for anything. My husband is not diagnosed yet but has had 2 surgeries for spinal compression with no positive result. Had test for lyme disease and spinal tap for MS (negative on both) and 2 inconclusive EMGs. This had been going on 2 yrs. It took one year just to discover the compression in the cervical area. Every doctor takes approx. 2 - 3 months to get in to see then tests then no answers. We've seen more than half a dozen already and have reached the point of shear frustration. Don't give up hope. See as many doctors as it takes. Take lots of notes and become your own advocate. Best of luck to you.
 

Jamiet

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Just j summed it up....this is going to be a long road.

If i were you, i would call the closest MDA / ALS clinic, go see the specalist to rule it in or out, they see it every day.

rgds,

Jamie
 

crystalkk

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Hopeful,

If they did not do a Brain MRI how did they rule out MS.

It is good that you are not to worry, anxiety can make your symtoms worse.
 

hopeful123

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Hello everyone,
Will not have any type of surgery on my spine until all else has been ruled out. The Neuro doesn't think it is MS Because my vision is fine. Was wondering about that myself. Believe me by Dec. 3rd I will be alot more educated on all the posibilites and know what to ask before any surgies are done are any diagnosed made. Please keep the thoughts coming this is a big help. Hope all on this forum get the answwers they are looking for and to those already diagnosed w/ als you all are in my thoughts and prayers.
 

mamaoftwo

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Just to say

Good luck with your appointment on Wed. Sending +ve thoughts your way.
 

crystalkk

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Good luck today, keep us posted.
 

hopeful123

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Hi Everyone,
Hope everyone had a great holiday. I had my doctors apt. this morning and realize this is going to be a long road and I will need to learn some patience! The Emg results showed abnormalites in my rt. leg. During the Emg he tested my rt. leg and arm. The ncv showed mild bilateral carpual tunnel syndrome. Four years ago I had bilateral surgery in my hands for carpual tunnel, have not had any symtoms since then and still do not have any symptoms. Anyway, my neuro said he is leaning away from Als but can not completely rule it out yet. My balance is becoming worse and I am tripping and falling down more, but still able to get around fairly well. Since I last posted I am having swelling in both lower extermites. Not just normal swelling. I have 1-3+ pitting edema. It is better when I get up in the morning but by the end of the day my legs and feet are very swollen. Today my DTR'S were very brisk with slight clonus in my rt. foot.
So where are we going from here... My neuro is scheduling MRI w/ contrast to r/o MS or any type of brain tumor. He said if that comes back clean he wants me to see a neuro in Atlanta, that specialize in neuromuscular diseases. My neuro said this could take several moths to diagnosed. He wants me to keep a journal of how symptoms are progressing and if any new ones develop. He said he could give me a calcium channel blocker for the muscle cramps but if I could hold off that would help. He wants me to be able to tell him if the cramps are worse or getting better. But if I am tired of hurting he would give me something. I agreed to wait until after the MRI.
Sorry this was so long, but feel in order to get the best advise from you guys, I need to let you know all thats going on.
Thanks so much to everyone who takes the time to give advise. It really means alot to me that strangers I have never meet before can be so caring. I can't say thanks enough!

Tonya( aka Hopeful123 )
 

crystalkk

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Hi tonya,

Yes it is most likely is going to be a long road, and hopefully something treatable.
Did he tell you what the abnormalities where in your rt leg.
do you have any atrophy anywhere?
just hang in there, and be patient..... it's not easy.
 

Al

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Hi Tonya. It's good that he is leaning away from ALS. Sounds like he is being thorough and these things do take time. Your symptoms could be from many things and it is easy to say don't panic but just take it one day at a time.
AL.
 
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