Awaiting diagnosis - Here is my story

[CBowman]

Hello everyone, I am 34 years old and would like input for anyone that may help.:mrgreen:

It has been as scary 4 months. The disease started in October of 2006 with very tight calf muscles. I thought that I had strained them in the gym, but weeks later my left foot dropped. I went to see an orthopedic doctor and he told me I had foot drop, basically gave me a brace and told me to wear it for a month then he would do a EMG test. A week after I received the brace, I noticed my hamstring muscle on my left leg was also getting weaker. I called the doctor and moved up the EMG test from 12/7/06 to 12/1/06. When the doctor performed the test the results were abnormal in my left calf/leg and in my right leg. He ordered brain and spine MRIs. The MRIs came back normal. The orthopedic doctor was stumped and sent me to a Neurologist.

I was able to see a Neurologist rather quickly (I begged the receptionist). He performed a physical test and gave me the bad news either MMN or ALS. After he performed another EMG, he stated that he thought it was MMN in lieu of ALS but wanted me to get a second opinion. The second opinion came back more likely ALS than MMN (he also did a physical test and EMG and Nerve conduction test but had different results from the first and second doctor), but he started me on IVIG on 12/18/06.

By this time (12/18/06) my left leg was in bad shape (foot drop, calf starting to shrink, hamstring giving out especially going up steps) and my right leg was starting to get bad (calf muscle weak, foot and hamstring starting to weaken). Not to mention the muscle twitching was all over my body (legs, arms, back, chest, shoulders, etc.)

The first round of IVIG didn’t seem to do anything (with the exception that the weakness has not spread), but I convinced my doctor to do another round of IVIG and start physical therapy. I started physical therapy on 1/1/07 and my second round of IVIG started on 1/7/07.

My doctors appointment on 1/16/06 (he gave me a physical test to monitor progress) and he noted that my right leg has improved and said that this is a good sign of it not being ALS (because ALS does not get better) but will not rule out ALS until more time passes. I have not had any other weakness since starting IVIG but my left leg does not seem to be getting better. My physical therapist stated that from 1/1/07 to 1/14/07 I have a ¼ muscle grade improvement on the left leg and a full muscle grade improvement on my right leg, but I cannot walk more than 20 yards without stopping due to fatigue in the left leg. Another thing I have noticed on a positive side is the muscle twitching has lessened.

I saw my doctor again on 1/22/07 due to the fact that my left side has continued to get worse (my hamstring and quad muscle are weakening even more). Now in order for me to walk I have to keep my knee on my left side locked. My doctor is ordering me a wheel chair and says the speed of this is unlike ALS but I do have a brisk knee reflex which is like ALS. My right leg is still pretty normal with a little weakness in the foot/calf area (1 degree weakness). He is sending me to the Mayo clinic soon. I am awaiting a telephone call today.

In addition, last night and every now and then when I wake up my right foot feels sore or numb. Does this mean anything?

I have been reading a lot of entries, you guys/gals:| have given some good advice.

Please give me some advice on what this disease might be?

For some reason he is ruling out everything except for ALS and Multifocal Motor Nueropathy (MMN).

Oh, I forgot to mention I also have (AS) Ankylosing Spondylitis. AS is a arthitis condition that wants to fuse the back, I have had this condition since I was 18. The doctors don't think this has anything to do with my current condition.

Thanks

[Al]

Hi Chad. Just the fact that you felt some improvement from the IVIG would lead me to think of MNN or one of the other less? serious motor neuron diseases. They tried the IVIG with me and I didn't get any better and had an allergic reaction. They then tried a cancer drug called Cytoxan for 6 months. No better there but you may have better luck. They could be thinking auto immune disorder. Those are much better than the alternatives.
AL.

[CBowman]

Thanks AL, the IVIG only helped on the right side and my right side was not all that bad. The only difference with me compaired to a lot of people on this site is that there was not a long period of time before it just hit. I had tight calf muscles which lead to the drop foot then bad hamstring to my quads and hip all in 4 months. I am very nervous about the whole thing, even if its not ALS its bad to go from walking to 4 months later being bound to a wheelchair. The doctor here has only said it could be MMN or ALS. Do you think it could be something else?

[Jamiet]

I would agree, something serious is happening, the Mayo will likely take you alot quicker if your doc refers you....
Al is spot on that if you got better with IVIG, thats a sign, as ALS gets better with nothing, except possibly diet and Riloutek...and that's a big possibly and usu. shortlived...

What exactly was abnormal about your EMG...did it have Fibrillations and Pos. Sharp Waves? Those are the two ALS features of the EMG....How was your NCV, was it abnormal?

Als can move quickly or slowly, hopefully you have MMN.

You should find an MDA / ALS clinc also, Mayo may diag you, but unless you live close to the Mayo, sounds like you'll need a MDA Clinic also.

Your in my prayers man...I'm 32, two young kids and problems just like you since Oct 06. It's tough!

Good luck...!!!! Keep us informed.

[CBowman]

Jamiet,

Thanks, my doctor is refering me now. I most likely will be going to Mayo on Monday.

I am not sure what was abnormal about my EMG or NCV. I really havent asked those questions.

There is an ALS clinic close to me but my doctor (Nerologist) wants me to go to the Mayo Clinic or White House of Nerology.

Your in my prayers too. Thanks for the input and thanks for the other website you gave me.

How are you holding up? You seem calm. I go from being calm to being crazy. This website has helped me. If I do have ALS, I know there is a lot of support and good people out there (especially on this forum).

Keep me informed of your status also.

Thanks again.

[janf]

Hi Chad. We all have up and down days but. not knowing drove me crazy. Now I deal with each day as it arrives I enjoy the people that love me and Pray for healing and peace. Your answers will come I will pray for you. I go to Atlanta Emory ALS clinic. Wounderful place God Bless. Janf :)

[Paradox]

My two cents: It is highly likely that your EMG had fibrillations and positive sharp waves, otherwise the neurologist would not have considered ALS or MMN as a diagnosis. The IVIG was given for the possibility of MMN. What I have learned is there is no great ALS test, and the diagnosis is made with specific criteria which includes ruling out other things. When a doctor doesn't know for sure, he will try to treat, hence the IVIG and Cytoxan (for Al).

[Jamiet]

Chad,

I seem calm, but have my ups and downs... It's like i went thru this panic stage for about 3 mos...freaking out, literally.....could not work, think and made my life and everyone around me just plain miserable...

The best thing i did was get on wellbutrin...it really helped, but also, i came to grips with what's going on....i've decided, i'll likely never be normal again, but i cannot let that rule the time i have left, wether its 50 years or 5 years or 6 months. If it's shorter, i need to spend my time wisely, not freaking out...make the most of each day, don't worry about the past and the future is too unpredictable to worry about.

For me, the panic passed, i hope it will for you, i'm in survival mode at this time. The chat room i gave you was a huge help!!!!! Also, this forum is a great one also!

Look to just one or two people to talk to your problems about and also the chat rooms, but i've found, don't spread your news too far, people will start thinking your nuts!

My wife & mother have been the two closest ears to me, besides that, the people in the chat rooms are the best...they have lived what you and i are going thru and offer a tremendous amount of support, wether you have ALS or not.

Good luck and keep in touch..

Rgds,

Jamie

[maf]

Hey Jamie, how did your three day workup go? Hope your kids are well!
Paradox, congrats on the good EMG!

[CBowman]

Thanks Janf,

I have been thru Tifton, Ga. my parents live in Auburn, AL.

[CBowman]

Al,

Did the IVIG help with the twitching? When I get done with a round of IVIG, the muscle twitching seems to go away or is very minor.

[CBowman]

Jamie,

I have my mother coming down to confort me for a while, and she is also going to the Mayo clinic with myself and my fiance.

I am also taking zanex at night to help me sleep, I have been able to sleep the last couple of night because of the zanex and tylinol PM.

[CBowman]

Paradox,

Is the sharp EMG waves only ALS and MMN. Could it be something else, some kind of other diseases?

[Paradox]

From a neurology textbook I have access to online:

'Fibrillation potentials and positive sharp waves are found in conditions with increased muscle fiber irritability. They occur in denervated muscle but may not appear for 3 to 4 weeks after an acute neuropathic lesion. They are also found in patients with inflammatory disorders of muscle, occasionally in patients with muscular dystrophies, after muscle trauma, in patients with certain metabolic disorders (such as acid maltase deficiency), and in association with botulism.'

They are also seen in ALS.

However, I wouldn't take much meaning in any of this without talking to your neurologist. Ask him if there are other possibilities. I understand your frustration. Even with a medical degree, I found it difficult to interpret what my possibilities were.

[Jamiet]

Maf,

I've come home with more questions than answers.....The neuro still is adamate i don't have ALS, which is great, but what the heck is going on with me.......

My EMG and NCV, which was the first test done, was abnormal.....so I'm really confused...I don't know exactly what was abnormal, but I will have a full copy of the reports monday. the NEuro who did the EMG was probably one of the best in the south...he was like a kid in a candy store with me.., like he handn't seen this in a while? Something was wrong wtih the NCV also, when he would send the signal backwards, and would shock me like 8 times in a row, it would start looping or giving some type of discharge.....the EMG...he told me i had very irritated muscles? Anyone have any idea...of what that meant?

I thought an NCV was supposed to be normal in ALS, if so, that's a good sign...I guess...kinda crazy, a abnormal NCV a good sign?

The EMG guy blurted out something called Isaacs Syndrome, but i don't fit the profile...so, i'm really confused....

At the same time, my feet are still shrinking, i've got alot of saliva all of a sudden...and i just don't know...

The neuro tells me i'm as strong as an Ox, which i think is her big thing why she's saying i don't have ALS. Also the EMG did not show any Fibrillations...she mentioned this...I don't know if there were PSW's? All i know is the EMG guy told me 3 times i was having a very very very special procedure and that at the end, he told me twice it was abnormal.

Spinal Tap, all blood work, speech and breathing test normal, the neuro cancelled the muscle biopsy and i didn't have a barium swallow test..So, here we are...she wants me back in 1.5 mos...


i'll have more info Monday once i read the reports, i told them i wanted a copy of the EMG results..to view myself...

Rgds,

Jamie

[maf]

Hey Jamie,
Bummer about the checkup, more questions than answers is just more confusing. But it's great they are sure you don't have als. What are your symptoms now, are they still the same? Are you weak? What's an NCV? Do you have twitching? Is it constant or random?
I'm holding off on the neuro for a while, I felt good for a week, like real good, then got a cold and felt kinda crapy. It was so nice for that week to feel semi-normal again, I miss it!!! The neuro wanted me to get a mri of the neck, I don't know what that will show him, a bulging disc maybe? He said he didn't think I had als because I was strong, I'm just going to wait it out for a while to see if any other things come up. I'm going down south to visit my family and see if it's not the enviroment I'm in that is causing some problems. Ever since my husband and I sold our house and moved into this apartment I've been sick and my daughter has had a cold for almost three months and my son has had 4 stomach flu symptoms. My husband isn't here like we are all day so he's been fine, he did get the stomach flu once. I'm hoping we all feel better while visiting my family. Hope all is well.

[Howdy]

maf I would have someone check the apartment out and see if there may be mold problems. Mold can cause many health problems. It could be mold or other similar type problems causing your familys health problems. I have a construction co. and we have run into this type problem. Howdy

[CBowman]

Howdy,

I am a project manager for a comercial construction company. Did you do residential or comercial work?

[maf]

Hey Howdy,
Thanks for the info, it's a fairly new apartment 3 years old. I do have the heaters running none stop though, I guess we will see how things go when I go down south. Hopefully my husband will find a house for us to buy while the kids and I are gone!!

[Howdy]

CBowman I have worked on both Res & Com Jobs. I'm in the process of selling the business to my oldest daughter. I'm an Electrican by trade. I worked for several companys as an Union Electrican from 1956 until 1972 when I started My own Electrical Contracting Co. I bought my Dads Construction Co in 1979 when He retired and run both Companys until about 2000. At that time we quit the Electrical and expended the general construction business. We now do a lot of Insurance work, Fire, water damage, wind and etc. Howdy

[Howdy]

Maf Mold can start growing with in 72 hours if the conditions are right. It can be in attic, crawspaces, wall cavities and etc. This may not be your problem I'm just trying to be helpful. Hope your family get well soon. Howdy

[Howdy]

CBowman- If you want to see our webb site it is www.englishconstruction.com