Worried/Scared waiting to go to Mayo Clinic

[sisstg]

I am frustrated and scared because my symptoms have gotten so bad that I can barley leave my house for the last three months. My dr gave me a referral to the mayo clinic but they wanted to wait to get my EMG results to make sure I was going to the right speciality clinic. What is really worrying me is that I finally had an EMG done(the dr had done emgs at the mayo clinic for years and recently semi-retired to our city) and the results are taking forever. the dr said nothing after the emg and the dr that ordered the tests cancelled my follow up and said he would send the emg results directly to the mayo clinic. I asked for the results but the office said they are still getting the report done(I would think a mayo trained EMG dr could say something to me and not take weeks to write results?)The mayo clinic is 3 months out booking so I just get to sit here and wait?

I started having symptoms that changed the way I had to do things at the end of last year. Some symptoms could have happened prior(oddly I had unexplain mild atropy in my right leg 12 years ago but nothing progressed) but last year I had to start changing what I did. It started with not being able to drive more then 20 minutes without my leg getting so tired and weak. Then I started having trouble walking the kids to school(which is less then 2 blocks away), I would get soo tired espcially my legs, be out of breath and it got to the point where I would make it half way and my legs would give out. I fell several times.
My primary care dr kept saying I was stressed or it was a virus. I even went to a psychatrist who said it was not stressed and got very mad at my primary care dr for not doing more.
By May I had trouble even getting up to go to the bathroom and showering. One issue is that my pulse goes so fast (usually about 120 but up to 150) just getting up to go to the bathroom, once I lay down it goes back down. I get exhustaed even talking on the phone and if I talk more then 30 or so minutes I start to slur. My husband and kids sometimes have a hard time understanding me. My son says I talk like I have strep throat and my s's sound weird.

In May my left foot which was already weak when I stood on it I get a sharp pain on the top of my foot so I am walking on the side of my foot. My left hand over the last few weeks I usually type with my index finger but it is stiff soo I use my middle finger to type. In the last month or so I have twitches at night in my calf and forearm. It is hard to get to sleep and I wake up almost every morning with one side very numb (the side I sleep on). I am also constantly yawning which makes it hard to get to sleep so I have to sleep sitting up.

Some other facts. I am in my late 30's. I am average weight and height (though never an althete I used to be able to walk several miles a day without issues, I'm not in perfect shape but not out of shape). My left upper arm and leg ache if I try to push myself.My brain MRI for years has showed some white spots but they never change and no one can say what they are. Blood work shows on off positive EBV/CMV infections, Factor V positive, high homostine, low lympocytes and had showed low B-12 but I take extra now and it is okay.



I appreciate the board and any opinions. My grandmother had ALS(I was born 10 after she died) but I know it took a huge toll on my mom's family because there was not alot of outside support then.

 

[lydia]

Hi Sis,

You sure do have a lot going on. I am sorry you have to wait so long to get to the Mayo. My father-in-law just endured a 9 week wait for the Mayo in Jacksonville, and it was very hard for him and his wife to focus on anything but the upcoming appointments. Life just went on hold for a while. I know others will comment more, but in the meantime, know that this is a very nice place to help you sort this all out and wait out the weeks with some good company.

Lydia

 

[Al]

Did they do any thyroid function tests? Some of your symptoms could be related to that.

AL.

 

[GRAMS211]

Hi! I went to mayo, rochester, a year ago november. Some symptoms are similar but the pain is not one. I have pain in shoulders and joints. Back to mayo, give them a call and tell them about thank progression and ask to be put on a cancellation list. I did. They called back and got me in within 2 weeks of my call.
Did they r/o ms? Just wondering.

God bless you !

 

[sisstg]

Thanks for your responses.
They have pretty much ruled out MS. The funny "spots" on my MRI have not changed in 10 years and it is only on one side and getting progressivly worse.
I have had my thryroid checked a bunch of times over the years and it is fine.

I think the most worrisome thing is my foot is starting to look deformed. In my mind I can push through pain, and weakness and try my best to keep going for my kids (I have an older child with autism) but my foot is uncomfortable feeling and I look at it and it does not look normal, just reminds my mind something isn't right. My left foot the side looks like it has a really bad tailor's bunion and my pinky toe curls under and goes under the next toe which also is curled a bit. This started to become bothersome about 2 months ago. I have a good friend with severe RA and I used to go help her put her socks on and it kind of looks like her pinky toe side (not her whole foot which is much worse then mine). Also when I type my finger (index) just does not do what I want it to. I have used a laptop for 17 years and typed sitting in the same position and just bothers me I can't use my fingers the way I want to. My index finger is just super flexible and pulls back way further then my right one and I have little control over it.

The mayo has been nice. They really want the EMG results before the schedule. There is a person assigned to my case and she calls all the time to update what is going on. I am going to the scottsdale Mayo. What is weird is the dr that did the emg that used to work for the mayo, he last few statements to me were some people hang out waiting for cancellations for weeks.

I just wish I knew the results of the EMG. It would sure make the waiting a bit easier. The dr did 3 needles on my leg and 4 on my arm. The machine noise was like static on an untuned radio it stayed pretty much the same. When I was changing I looked at the the graph that printed out (do not know if it was from the NCS or the EMG part) it had 2 spikes(they number next to it was like a 50) and then leveled out to a 2?

 

[Northern Dancer]

Hi Sisstq,
I can only imagine how difficult a time you are going through. When my EMG was done, the noise the machine emitted sounded like loud static too. I asked almost no questions about the test, however, I understood that the noise was from spasticity. Spasticity is indicative of upper motor neuron problems and ALS is a lower neuron problem. So hold on to that fact for now.

Can someone treat you to a few hours away from your responsibilities at home?


Lorna

 

[sisstg]

My husband does just about everything for me (even without me asking these days) so unless I do something he does it for me. We have kind of gone back to what it was like when I was on bedrest being pregnant years ago. I might put the laundry in the washer, he takes it out and folds it and puts in away. I try and unload part of the dishwasher usually the non-breakables, he does the rest. My husband is great with our autistic son (it is not his biological son but he has been there since he was 2), they take 2 hour bike rides every night, they just rebuilt an atv. I do the school work and listening with my son and my husband does the physical stuff.

I wish I could leave the house. I miss going to yard/garage sales so much. Over the past 3 months I have turned down many invitations out to dinner, shoping, movies etc. For mothers day I got several giftcards and I really wanted to go buy some new jeans. My husband took me to the store , held me so I wouldn't fall, stood outside the dressing room(which isn't too popular to do in conservative Utah) and after 2 pairs , the frustration of buttoning and trying to stand up I was so out of breath I had to go to the car. I have to eat most of my meals in bed propped up , I get tired sitting in a chair so I would hate for someone to watse money taking me out to eat if I could not make it through.

I have thought about using the electric cart at the store to see if it would help me stay longer but our city is a retirement area and some seniors get very nasty when young people take them. Just watching my friend with severe RA, several times when using the handicap stall in the restroom when she had a babies diaper to change, people got the manager to come in and try and kick her out, or they yell at her for using the handicap parking when she has to use her teeth to buckle her kids in. At Christmas I saw a young mom in a electric cart at the store and a senior yelled for her to get out, that he had a bad hip, it got very heated. Poor women cried, she was going through chemo and was so tired and just wanted to shop for her kids for christmas and and had not been out to the store in months.

For now I have just so I have no regrets down the road (since I am a coupon clipper) I have hubby make more of my favorite foods reguardless of cost, I have tried to spend more "initmate" time with my husband , I have let the kids stay up really late playing countless games of on webkinz against me and I have been writing alot.

 

[Moonmark]

Hi Sisstg-- sorry to hear about the health problems that you are having and also having to wait to get an appointment. I am no doctor, but it does sound like some of the problems do not fit ALS, so try to hold onto that thought while you await test results and an appointment at the Mayo. It could be any number of things, including some you and I may never have even heard of. Your description of your foot actually sounds like the tailor bunion you described and perhaps it is not even related to the other problems.

I also think it is impossible for a layperson to interpret the sounds of EMG tests. In a panic, I tried to do the same myself when I had an EMG one year ago. I think I may have even asked about that static sound here myself and was reassured that it could mean absolutely nothing. I would also not dwell on what it might mean that the testing neuro did not give you the results. I had the same experience one year ago when an EMG was done on two legs and one arm. I asked the neuro, a specialist in neuromuscular disease, whether all was OK and he would not tell me, saying he had to analyze the results and write a report. I had heard that many people received news, if it was reassuring, on the spot, so of course, I interpreted this to mean that it was abnormal. I had to wait several weeks for the results, which turned out to be normal and the neuro said I did not have ALS.

I still do not have answers and I still have problems with brisk reflexes, muscle spasticity, late-afternoon fatigue, some finger weakness, and recurring muscle cramping and very on and off again twitching in various places (it has been off for a bit now), etc., and still no answers. I have some trouble using my right arm now to reach over my left shoulder and scratch an itch, for instance; that is the extent of my functional impairment (thank God). I, too, have woken up with both hands numb, both feet numb, arm numb at different times, not sure how it relates to overall problems. I, too, have several scattered lesions on brain MRI and I am supposed to be followed up every 6 months to one year, but all other tests for MS were normal. they plan on repeating both the EMG and MRIs at some point.

How are your reflexes? what about other neurological signs, i.e., Babinski, Hoffmans, etc.

I guess I am just throwing all this out there to reassure you that this may very well NOT be ALS and not to jump the gun and diagnose yourself. I do not intend to dismiss your symptoms and I am very sorry to hear that you have kids to take care of, as well as deal with this.

Good luck and keep everyone posted--

Sandra

 

[halfin]

EMGs always make that noise. The "static" is just a series of clicks very close together. Each click is one muscle fiber firing. We don't feel it, but our muscles work by a series of tiny pulses. Millions of microscopic muscle fibers work together, each one contracting for just an instant as it gets a signal from the nerve. All these individual pulses of contraction average out to produce the smooth pull of the muscle. The EMG needle records these pulses and also makes them audible. That is why we hear a rush of static when we contract the muscle. If you don't hear static, that means the muscle or nerve is dead.

I'd suggest you call your doctor's office and press for your EMG report. There is no need for you to wait months. It is your medical record and you are entitled to it. Be insistent. People here can helo you interpret it, or perhaps the doctor could even call you and summarize what the results mean.

 

[laurel]

Hi Siss. I am sorry you are having such difficulty. Have the doctors mentioned Charcot Marie Tooth Disease? You can google and read about it. Some of what you describe sounds like CMT. Good luck.
Laurel

 

[sisstg]

I have an appointment with my old primary care dr (who has an MSW which makes him a great listener and understands mental health and worrying but is not critcial) on Monday. If the results are ready he will get them or keep calling for me.

Until early May I was trying not to even look on the computer and just rest. When I got the sharp pain in my foot, I finally looked on the computer since I am homozygous Factor V(it is when your blood clots too much) I wanted to make sure since I had been inactive I did not have some sort of clot. When I looked up the foot pain I read about neuropathies, and the automatic neruopathy jumped right out, because of my unexplained pulse/ blood pressure, urinary rentetion issues (confirmed by ultrasound multiple times) and my total inability to sweat(sounds weird but it is frequesnlty 105+ where I live and I always wear long sleeves and long pants and can be outside for hours without sweating). My immune sytem has been very weak for 8 years. I got my first CMV infection in 2002. It was active for 9 months, and got bad enough to start to effect my eyes (and I am not HIV positive). The symptoms were nothing like this, Huge swollen glands, constant sore throat, and fevers. The dr changed and got concerned with the slurred speech (I was talking to one of his patients when it happened and she described it to him), and the weakness was only one sided and really only in 2 specific areas, it was my foot first and then my finger about a month later.

My reflexes have been "brisk" and the Babinski my foot did nothing. the dr only tried the Babinski on one visit and my pulse at the time was over 150 and the nurse was trying to get me to lie down, she was worried because I was so out of breath.

 

[Moonmark]

HI Sisstg-- one thing I forgot to mention-- if the doctor does not get back to you about the EMG results, you can pick them up directly from the hospital lab where the test was conducted. That's what I ended up doing because I could not wait any longer. There should be a summary that you can understand and if you get the actual readings (numbers) and post them here, there is a specialist in EMGs who may be wiling to interpret (Wright).

again, with the pulse/breathlessness issue, it sure sounds like something else.

Good luck-

Sandra

 

[laurel]

Yes Sandra, that tachycardia and breathlessness maybe indicate problems in the parasympathetic nervous system and with her history one has to query some sort of autoimmune disease, vasculitis, CMT Disease etc. The Mayo Clinic should get to the bottom of it.
Laurel

 

[sisstg]

I have tried to stay off the computer for a few days and focus on my family. I still do not have the emg results. I had them done by a neurologist at his office. I believe he is just a part time semi retired dr that comes to do emgs. I had my primary care dr call and they just said the results are not ready. I called and there is nothing to pick up and the Mayo clinic called and again was told no report is ready. The mayo said they just can't schedule without the emg. I called the closest MDA clinic which is about 1 hour away but they said my address is served by the one 5 hours away. I would normally drive the 5 hours but I think it is useless I would rather not elborate more online due to a personal situation that happened years ago when my ex husband was employed at the hospital.

All my primary care dr is doing is trying to help the high blood pressure and pulse with various meds and it hasn't worked yet.

I have tried so hard to push myself and go out my my family but the more I try and do I end up having pain (in my upper arm to shoulder and upper leg) and twitching at night in those areas. My husband feels like I am using these muscles to compenstate for my weakened foot and hand? I also notice that most of my left fingers are so flexible suddenly as well as 2 of my toes. Most of the time my left hand is slightly curled but if I play with my fingers that bend into positions I could never do with my right fingers.

I really feel like I have no options left and I am not a person who gets down but if the mayo won't schedule without the emg. There is no report to get. There are no other neuros in my area. When I do go out people are always asking what is wrong. They can see my hand does not look right. My kids which I usually can hide not feeling well from are starting to wonder why I can't even play a few games of checkers on the computer against them or I can't talk very long (because I usally am a chatterbox).

I have lead a pretty interesting life up until the last three months letting nothing stop me. Years ago I left stability and money to persue dreams and now I just sit here with one side of my body not working right and not even hope that I even have an appointment anywhere for answers. In the last 3 months my husband has taken 22 days off from work and I have no answers and I don't know how much more time he could take off espically if I had to out of the area.

 

[sisstg]

I'm sorry to be bothersome again. I really feel like I am losing it waiting. the dr with the EMG office is closed till monday so I am still waiting. I really felt like I needed to talk with a counsler but there are only a handful in town and only one would take new patients with a 1 month wait. They asked for information and I was losing my voice and they couldn't understand me so I couldn't even get on the list. Even my husband sometimes does not recongize me when I pick up the phone.

Can one lose there voice this quickly? Bascially I can talk for maybe 20-30 minutes (with a few funny sounded words in the mix) and then my voice sounds like am I getting laryngitis. If I cough and some pheylm comes up maybe I get another 5 minutes or so of talking. This has only been for 6 weeks or so. I also starting having to wip the right side of my mouth when I talk. It is not full drool but wet and irratating.

Also how fast do ones hands/feets progress. I know it is different for everyone. It just seems so fast that my leg was weak/shaky in april and now my toes are curled and it is hard to walk at all. same with my hand, which went from weak to fingers not doing what I want them to, now my whole body seems to have shifted because of my arm just hanging, all in a month .

I live kind of remote have no family left living besides my mom(who is not a help) and because of the economy most young families are leaving or have left so I have few friends my age. I have been sitting up crying most nights and worrying especially about my austistic son. I am his voice and I am losing mine. I would be fine if I at least had a date of an appointment but with no date for an possible answers and each week getting harder. I gre up ina large city so I am used to having several hospital and dr choices close by. My remote area actually has a sizable population but no drs will come because of poor pay and schools. I only came to do a long term research project that I thought would help people but now I regret leaving the large city and its resources. I have cried most of today, and my dr said there are no counslers just take some pills and sleep till the EMG results come in. Great advice!