hi, does this sound like ms? and updated, how bad does it have to get?

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froggygirl23
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Date Joined Aug 2006
Total Posts : 20
   Posted 8/13/2006 10:31 PM (GMT -6)   
Symtoms: All the time dizziness, (for the past 2 1/2 months)
weakness all over.
Weakness in hands and feet that comes and goes. Tingling in fingers.
Sweating for no reason.
Swallowing trouble (clearing throat alot after eating meals & feels like there is something in the throat all the time),
restless legs syndrome symptoms,
numbness has had two bouts in right side of face/head, and some more numbness in face to a lesser degree.
Also is tired often, doesn't sleep or eat well, has a physically demanding full time job, has been off work for a month with no improvement.
Has has memory problems also for about 3 months or so.
Feels like he's in a fog
He stumbles frequently

THE dizziness and weakness is the major problems.

He has had one clear MRI on the brain.... no spinal tap and no mri of the spine yet.

Post Edited (froggygirl23) : 8/16/2006 9:22:35 PM (GMT-6)


uppitycats
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Date Joined Jun 2005
Total Posts : 2135
   Posted 8/14/2006 5:02 AM (GMT -6)   

It sounds like you are talking about your husband, or partner?  He's a long way from diagnosis, whether indeed it is MS, Lyme, or a whole host of other diseases.  He needs to get follow up MRI's, blood tests, maybe a spinal tap.

Without knowing what kinds of testing he's already been through -0- you mention only the MRI -- it would not be possible for us to even begin to help think about next steps. Many diseases look like MS from the outside, and share symptoms such as you describe.  All of them have to be ruled out before a doctor will determine it's MS, unless clear signs show up on an MRI (and so far that hasn't happened) or in the spinal fluid.

Presumably he's returned to the doctor to continue to tell him about new or increased symptoms?  Was it a neuro that ordered the MRI? Sometimes starting with a good family doctor who can help sort through the symptoms is a good place to begin, and let the doctor decide where next to pursue treatment -- an infectious disease specialist who might recognize Lyme (although, despite Violet's protestations otherwise, many family physicians are aware of that disease), a rheumatologist; or tests to determine whether he has a problem with his thyroid, or has diabetes -- all of these things, and others, share symptoms.

Tell us more about what he's doing to pursue a diagnosis, and we'll try to help you find a good path.  Be aware that these things can take a LONG time to diagnose, sometimes.  2 months seems like an eternity when you're the one sick, or worrying about someone who is sick, but some folks go for many months, even years, waiting for something specific enough to be diagnosed.

Come back and tell us more, and we'll try to offer some more ideas.


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


froggygirl23
Regular Member


Date Joined Aug 2006
Total Posts : 20
   Posted 8/15/2006 5:12 PM (GMT -6)   

He has not had a spinal tap yet. The neuro didn't want to to it until the internal medicine doctor looked him over good, in case it wouldn't be necessary. The MRI was of the brain only.

His history before he got sick was working at night, sleepin about 3 or 4 hours a day on average, eating once maybe twice a day. He would drink one or two beers a day.

He when first started getting sick he had blood work done, which showed an overall low wbc(3.9) normal is 4.2-10.8, but the monocytes were 17.5 H (normal range is between 2 and 10) As far as the protein goes, it just says "total protein" 8.6 H (the range is between 6 and 8.3)  
Also Glucose was 115 H (normal between 75-100)

He stopped drinking any alcohol after the first blood test.
The second blood test
His doctor put him on Remeron for depression which he took for 2 weeks but had to stop. (He was having an adverse side effect with his mood) I have read that remeron can make liver trouble. The test that showed alt 74 H was a month after the first blood test and while he was on the medicine. I'm not sure if he would have been on it long enough for it to effect him that way.
Glucose 107 H (normal between 75-100)
TSH 0.59 was in the normal zone (0.47-4.

I finally talked to both doctors. Both of them didn't want to write him off for more time, they both wanted the other one to do it. That caused a big mess because they also wouldn't write a release for him to go back to work. They said they couldn't. Well, that made me mad because we were getting the run around very bad. I had to make 2 trips to the doctors and several phone calls to get it sorted out. Finally the internal medicine doctor wrote him a release to go back to work. So now at least he won't lose his job (his employers insist on medical release).

2 more big problems...

1.) he's still not any better. (stumbling, real bad weakness in his hands (they have ruled out carpal tunnel) constant dizziness, weakness all over, and numbness in his face/head) So he's going to have to try to work like that and his job is a physical labor job that is timed.

2.) The internal medicine doctor has told me that she has no idea what could be wrong with him. She has only seen him once, and only gave him another blood test that also tested for hepatitis which was negative. No other testing preformed by her!

The neuro orginally told us she thought maybe he had a metabolic problem, that he needed to see an internal medicine doctor to go over him, not the family doctor he had seen to get a referral to her. She said that if that doctor didn't come up with anything that she would do a spinal tap then. But that she didn't want to do that until she was sure it wasn't something simpler.

Ok, so the internal medicine doctor and the neuro call each other and talk... and this is what I understand to be true. The neuro wanted him to be referred to a big city clinic (won't list name) that has better tests and so forth. Well, after calling and visiting the office twice the internal medicine doctor did not say anything about that at all. I found out later by neuro's office. (I'll just say IMD short for internal medicine doctor, although it's probably not the right abbreviation) Meanwhile the IMD office is telling me that he's suppose to see neuro and figure out what to do from there. So I go back to IMD and say "look, neuro told me u was suppose to refer to "insert big clinic" and you haven't said anything about it to us. They told us that it was because the neuro said she was going to refer us (which I don't believe) so I call neuro again and she says no imd will refer. So I say again firmly, the neuro isn't going to refer us. Can imd doctor call neuro and get this straightened out please? so now I'm waiting on phone call from nurse that will probably not happen. I am so frustrated.

Why didn't the imd doctor do more tests on him besides blood work? Why are we getting the run around? Now he's going back to work, which is good for money and insurance reasons, but he's very sick, I'm afraid he will get worse working, especially since we don't know what wrong with him. We still know nothing and the imd doctor was a huge dissapointment because she basically didn't do anything to him, and didn't offer any suggestions. AND she didn't say "maybe it's due to stress or some kind of mental issue" she didn't say anything this time. The only thing she told us at first was that it sounded like he got a "virus" and he would get better any day all on his own. (within the next two weeks) which he didn't. She said she would refer to infectious disease if he didn't get better by that time. NOt only did she not refer to infectious disease but she also didn't say she wanted to see him back at any time. Why?

Thank you for your time reading this, any posts appreaciated.

thanks again for your time.


shellypoo
Veteran Member


Date Joined Dec 2005
Total Posts : 896
   Posted 8/15/2006 5:55 PM (GMT -6)   
Froggy,
My, what a run around you are getting! Are there any other neuro's you could take him to? Could you call one of the big clinic's and make the appt. yourself? If you can't do that and you aren't able to get his IMD or neuro to write the referral then you need to write them both a letter stating just what you did here and ask for them to please put his health first and do something for him.

I wish you all the best. Please keep us informed of what happens!
Michelle ><>
 
"Life shouldn't be a journey to the grave with the intention of arriving
safely in a pretty and well preserved body, but rather, to skid in
broadside, thoroughly used up, totally worn out, and loudly
shouting...."Wow! What a ride! Thank You Lord!!!"
 
 
 
 


uppitycats
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Date Joined Jun 2005
Total Posts : 2135
   Posted 8/15/2006 6:36 PM (GMT -6)   

The IMD is falling down on the job.  She did do the blood work -- which, along with testing for clinical signs, and a spinal tap, are really all that CAN be done at this point...but doesn't seem to be willing or able to follow up.  I'd be on the phone to both the IMD and the neuro, and press them to get him referred to the "big city clinic" -- which, given the length of time this is going on, and the bouncing around you're getting, would be a GOOD thing. 

Or I see you do have a family doctor -- another plan is to get back to the family doctor, tell him/her about the run-around you've experienced, and ask him to serve as "gate-keeper" -- he can get on the phone, sort this out, make referrals to the "big city clinic" and get that on track.

Usually what happens there is - - because they have a variety of specialists there and "on call" -- referrals among them are quicker and more direct. Maybe they'll be able to sort out exactly what's going on.  I don't know enough about the test results you offered to begin to give you any advice except that -- if they are abnormal -- that would not be typical for MS, but indeed typical of some metabolic or infectious disease going on somewhere, so the comments the one doctor made about a "virus" may not be far off the track.

Violet drops in on posts all the time to suggest that people with MS-like symptoms might have Lyme disease.  That might actually be a good thing to follow up on, with your (husband? boyfriend?). There is a "first response" test that isn't always accurate -- but if it IS Lyme, may well indicate that.  If not, you'd need to pursue a different, more definitive test. Has he been in/near woods at any time prior to these symptoms occurring? In the grass, at a park, anything where he might have come into contact with ticks?

At any rate, do keep on being persistent...but again, you might get back to your family doctor, tell him what's happening, and see if he's willing to go to bat for you.  Good luck! 

 

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


froggygirl23
Regular Member


Date Joined Aug 2006
Total Posts : 20
   Posted 8/16/2006 1:12 PM (GMT -6)   
we are going to get him in to see another new doctor.  This is my plan and you guys can tell me if it sounds good or what to change.
 
I want to see if they will test for these things:
**  free t3 & t4 also t3 & t4, not just tsh
**  viatmins & minerals in the blood
**  test his insulin by that overnight fasting test
**  give him a stress test
** and refer him to the big clinic I mentioned
 
Now, I'm wondering if a regular family doctor will do those things?  Also if anyone knows the technical names for those test feel free to share them. :)

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 8/16/2006 1:44 PM (GMT -6)   
Yes a family doctor can do all that you request. And depending on the results, may or may not need to refer to a special clinic. I don't know what "free t3 and t4 and tsh" are. A little knowledge is a dangerous thing; are you getting this information about the "need" for these tests off the internet? If there are no indications of a condition requiring those tests, a doctor won't necessarily just go ahead and order them.

Vitamin and mineral deficiencies will generally show up in "routine" blood tests -- that's exactly the sort of thing they look for. And while the overnight fasting test is good, if there is any indication of possible diabetes, it should show up in the new blood tests, too. Certainly worth asking about.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


froggygirl23
Regular Member


Date Joined Aug 2006
Total Posts : 20
   Posted 8/16/2006 9:16 PM (GMT -6)   

tsh checks thyroid levels, I am told free t3 and free t4 as well as t3 and t4 are more specific tsh levels.  Yes he has symptoms that could be attributed to his thyroid.  His tsh was the only thing checked so far and while not technically Low, was right on the end of the normal range.  Normal range is .47 to 4.68 His result was .59

My uneducated opinion is that since he has symptoms that could be thyroid related and his tsh was on the low side, more testing into it wouldn't hurt.

Also I have been over & over his blood tests results and see haven't come across anyting that has to do with nutrition or viatmins.  The only thing I have found is calcium, potassium, sodium, but aren't those all electrolites? There is nothing in there about vitamin levels like b-12 or D or any of those.  I know they can check for these things because they have done so on my daughter a long time ago. 

And I feel they should because he has always eaten poorly (as in not eating much of anything) and these past few days he has gotten worse!! He has had this for 2 1/2 months. He is sick to his stomach all the time, won't eat anything.  Sleeping more, and isn't doing the thing he enjoys most (his computer game) because his hands won't let him (they are too weak too type) and even when he gets up he doesn't stay up for long before he lays back down again.  How long do you wait before you take someone like that to the hospital.  How bad does it have to get? 


Post Edited (froggygirl23) : 8/16/2006 9:21:10 PM (GMT-6)


rhondab
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Date Joined Mar 2006
Total Posts : 2146
   Posted 8/16/2006 9:26 PM (GMT -6)   
Hey Foggygirl

Just wanted to stick my head in here and say best wishes to u both. Sounds like he's really sick and also sounds like he's got a great advocate in u! Stay on the ball as u are. Please continue to let us know how he's doing.

rhonda

froggygirl23
Regular Member


Date Joined Aug 2006
Total Posts : 20
   Posted 8/16/2006 9:39 PM (GMT -6)   
Thank you, that was sweet.  I let him know all the time "see people care, they post back all the time, they take time to read what's going on"  We are kinda isolated.  No big support network or social circle, so this forum has been a life saver!  Not to mention all the great ideas!!!

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 8/17/2006 8:19 AM (GMT -6)   
If indeed he is that ill, he needs to see his primary care doctor. He (or you) need to call, tell the nurse/receptionist that it's "urgent", describe the severity as calmly as possible (hard, I know!), and ask for an immediate appointment.

If the doctor does refuse to see him..you certainly need another doc. You can ask if you should go to the emergency room (that might emphasize for them your sense of urgency), or urgent care clinic. Good luck.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


froggygirl23
Regular Member


Date Joined Aug 2006
Total Posts : 20
   Posted 8/17/2006 9:21 AM (GMT -6)   
The neuro is going to refer, they want him to see the scott white clinic (which I had never heard of before) so I called the neuro again  this morning to ask for information about the scott white clinic that (she said four times was in texarkana) so I ask for the number, she gives it to me. She also asks if I'm going to call it. I said "uh- I don't know I just wanted to have it". Then I called the scott white number, and it is in temple texas. I ask them if they have a clinic in texarkana they say no. Well, I said the neuro is suppose to refer us there and I need directions how to get there. She said call information, (which I already had) I said I did that and they don't have a listing. She said we don't have one in texarkana. I was like ok. Thanky you. So I call neuro back and said "I called the number to get directions and they inform me there isn't a clinic in Texarkana so I called information and there isn't a listing there either." I said "I'm not trying to be a nusuance, but I wouldn't want her to go through all that trouble of making an apponintment if it's too far to drive" she said "I understand, there use to be one in texarkana and they might have closed it." I said the closest one is in Waco, tX. She said I believe temple is closer, it should only be a 3 hour drive. So while on the phone with her I pull up the map on google, and see that waco & temple are further south than dallas, which is a 5 hour drive and that waco is indeed closer!! She said she will call the scott white number and find out and call me back. How can this get so messed up? Before they told us that they referred to scott white clinic. Well, if that's true then why don't they know where it's at?
 
You might say well, when they referred before it was in texarkana but has since closed.  But the number SHE (the neuro) gave me was the number for the scott white clinic in temple, tx.
 
Also he has an appointment with his orginal family doctor that he first started seeing when this first started.  The appt is on the 22nd.

Post Edited (froggygirl23) : 8/17/2006 9:40:46 AM (GMT-6)


uppitycats
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Date Joined Jun 2005
Total Posts : 2135
   Posted 8/17/2006 10:58 AM (GMT -6)   
I would stop right now dealing with the neuro on your own. And get back to the family doctor. In fact, if your s/o is as sick as you say,

I'd call the family doctor TODAY, report that, and see if you can't indeed get in quicker.

I know nothing about the clinic you reference. I'm nowhere near Texas. I'd certainly ask the family doctor about it, though and see if there is any reputation, good or bad, in the medical community.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


uppitycats
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Date Joined Jun 2005
Total Posts : 2135
   Posted 8/17/2006 11:04 AM (GMT -6)   
If you do a Google search on "Scott White Clinic", you're sent to the Scott and White Hospital website...which looks like a reputable research center. There are several satellite clinics mentioned, so it could be that there was such a clinic at one time, but is now closed. Anyway .. you might want to do some reading there before seeing your family physician, or perusing a referral.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


froggygirl23
Regular Member


Date Joined Aug 2006
Total Posts : 20
   Posted 8/17/2006 12:32 PM (GMT -6)   
He seems to be doing better today.  As far as staying awake and he ate a little.  Which has me wondering if him "getting worse" has to do with the requip medicine he's taking.  For restless legs.  BUt all the other stuff is the same, dizziness and weakness.  I don't think requip would cause any hand problems though.  Uppitycats, thank you so much for your responese.  You are level headed and unbiased :) that's what I need.  (thanks to everyone else too)

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 8/17/2006 1:33 PM (GMT -6)   

Requip can indeed cause at least some of the symptoms he's experiencing. Here is a website that talks about it, and side effects:  http://www.requip.com/requip_just_started.html

Given all the problems he's having, I'd be talking to the doctor about stopping that (only do it under a doctor's supervision, though), and see if that doesn't help.  Looks like it can affect the appetite, too; you said he wasn't eating, feeling nauseous...

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


froggygirl23
Regular Member


Date Joined Aug 2006
Total Posts : 20
   Posted 8/17/2006 4:46 PM (GMT -6)   
Yep it's the requip.  He didn't have trouble for most of the day.  I think it's because he usually takes it at 8:30 in the morning, but he kept "forgetting" today until 4:30, now he's asleep It's 5:39  He takes his in the morning because he works nights and sleeps during the day.  Thank you for that site! We will call doctor I guess Monday? She is out of office Friday.  Have to deal with neuro again, :( because she's the one who prescribed it.  Oh goody.
 
Also, they called back and told us they would refer to UAMS, I was like really? I thought you said you couldn't.  They said they usually don't but will make an exception because of how much trouble it would cause for us to go all the way to waco, tx.  I was like "that's wonderful thank you, (sincerely) They said all they are waiting on is xray from hospital so they will have all the records to send them.... I told them that was done a long time ago, and she said "oh ok, then the hospital never sent it to us, I will have to call them about it"... errrrr.....  When we get the referral I will be happy! but after all this, I won't believe it until I have an appointment time and a number to call to verify!

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 8/17/2006 6:23 PM (GMT -6)   
I'm so glad I was at least a little help!
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


alfers
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Date Joined May 2005
Total Posts : 2671
   Posted 8/22/2006 11:11 PM (GMT -6)   
Violets hasn't popped in yet, so I will, since I am awake worrying about things tonight! froggygirl23, many of the symptoms of MS overlap with symptoms of lyme. Is his facial numbness on only part of his face? One classic lyme symptom is Bell's Palsy, which is numbness or paralysis in the left side of the face. Lyme symptoms can come and go and change from day to day, so it can be a really difficult diagnosis. Also, the blood tests are notoriously unreliable, and most GPs don't send blood to the one very reputable lab for bacterial infections (IgeneX in CA). The CDC website actually states that lyme needs to be a clinical diagnosis, which most GPs (and specialists) also do not seem to understand -- or they don't know enough about lyme to diagnose it clinically. Are you in Texas? Many will tell you lyme doesn't exist in Texas; while it is certainly less prevalent there than in some other states, it and other tick-borne illnesses DO exist in every state.Anyway, if you still have no answers, you might want to do some research on lyme. You can pop over to the lyme forum here on HW, or try reading about some signs and symptoms, as well as how to get properly diagnosed, at www.lymefoundation.org or www.ilads.org.

Good luck! I hope you find some answers soon.
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