Odd symproms could it be MS(tapered fingers)

[mamaberger]

Hi i have been having neurological problems for 2 1/2 years but my tests have revealed nothing yet but I am really declining. Has anyone ever had or heard of anyone having tapered fingers as a result of MS? Also the skin on my hands and feet is discolored, thin and shiny. I have so many other problems but no energy to get in to details. So if anyone has heard of anything like this related to MS please let me know. I have had a steady decline with no relapses or remissions. Doctors are boggled and don't seem to care. My frustration is running high. I was told a year ago by a neuro that hr would send me for a neuro psych evaluation and he decided my problem was depression and never sent me. I do so poorly on the memory part of the evaluation at the neuro and they blame it on depression, but I have had a serious drop in memory, and my IQ level is in the tank. As I'm sure many have experienced I have been hung out to dry and don't know where to turn. My old gp I had to leave because we moved saw the progression but did not know what I had and every specialist he sent me to said depression, anxiety and he never agreed with it. My throat is so bad it is starting to make gurgling noises I think it is because it feels like it is closing up especially when I eat. The last neuro I saw noted my fingers being tapered and the discoloration and sent to to a reumatologist who said fibromyalgia. I know it is not fibro as there are physical changes, ie crooked tapered fingers. I saw a physiotherapist 1 1/2 ago and she noted I had abnormal muscle tone and wasting in my hands. The neuro simply said the physiotherapist is not a neurologist and they blamed my muscle loss on lack of use and sure I can;t do what I used to because my muscles tire so easily. But who ever heard of a 30 year old losing muscles from lack of use. I am so frustrated I have a little boy and my husband has to work all of the time to support the family because i have not been able to work since this started. I have paid into disability but can't collect because of no diagnosis. Sorry to vent I am so frustrated and my illness doesn't seem to fit into any one category and I have not been to any doctors since I moved because I am scared to get told it's all in your head. My problem is I lost both my parents the year I got sick so of course it must be psychological. I did testing with a psychologist because all of the neurologists were convinced my problem was psychological and even when it came out normal they still said it was in my head . They won't even take into consideration a possible auto immune disease even though my two sisters have celiac( I am negative for it) and my other sister has RA and sjogrens and our grandmother has progressive MS. Anyways enough with my rant anyone with MS had any of this?

[mamaberger]

I see your little guy is named Jacob too. This break from the doctors has been the best thing as I was just being beaten down by them  and if I thought they could fix me I would be running to them but for chronic illness they for the most part only treat the symptoms. I just laugh at whole depression diagnosis for my symptoms especially when I did psychological testing that the first one showed normal and the second one showed slight situational depression meaning there is an underlying issue cause this ie my health. I said to the doctor if I was so chronically depressed would I laugh, enjoy my son, get out for walks despite my pain and fatigue, with what I deal with everyday especially the memory and confusion part which  had gotten really bad lately I am giving myself kudos for the way I fight everyday for my son and my family. We have been through so much but my son is so happy, people can't get over how content and smiley and happy he is. God if this was severe depression causing this there is no way i could fight and be strong everyday. Even though everything is a struggle because of pain,fatique and memory I cook, clean as much as I can and most important am the best mommy I can be. It may sound funny but I am fortunate to have had many struggles that have built me up to be one strong person and I have had to learn how to cope with such tough things in the past that I look at this as another hurdle although different from past struggles as I can't overcome this one. I have had to learn to be strong and persevere and that's how I get through this with a smile on my face, most days anyways. I do have my days and lately I have been thinking some happy pills may be in order to take the edge off. The toughest part is we don't have any family support. My parents both died at 52 and 55 within 10 months of each other two years ago and my husbands mom is very ill with Lupus. My moms family is far away from us but even if were close they are not the helping type. When my mom was dying with cancer I was an eight hour drive away but I was the only one who cared for her, everyone was too busy with there own life. I am a true believer in family and that you go to the ends of the earth for family but my family is not like this, my mom was like me in this regard. I do worry a lot because my husband has a lot on his shoulders and if something were to happen to me they would be pretty much alone in this big world. That makes me more sad than anything. Ok now i'm just getting myself sad when I am having a really good morning and the coffee is tasting exceptionally good today!Thanks to all for your replies and for caring!

[tiffany515]

regardless of what you may have or not have, I would say to get your butt to a new dr.  please don't let the past ones comments keep you from getting the help you need.  unfortunately, not all docs are compassionate, but some really are......you've just got to take a chance......for your son's sake and your own.  I really doubt that depression alone would be causing all of this, but even if it's just a symptom, you should at least get treated for that.  I've suffered extreme depression myself.  While I am currently undx'd as well, I at least am being treated for my depression and some of my symptoms, and it's making a world of difference.  I hope you get the answers you are looking for, and remember that EVERYONE deserves treatment.....even if it is "all in our heads"....lol.
Best of luck to you,
Tiffany

[mamaberger]

It's not Raynauds as my friend has it. Mine is a redness to the skin, no white or blue. THe reumatologist I saw said fibromyalgia could cause changes in the skin but I know this is way more serious than fibrimyalgia. The swallowing problems started in my throat because of twitching and this does not go with scleroderma. I saw an als specialist and she said no ALS and sent me to the reumatologist who tried to diagnose the whole problem as fibro, he ignored that she said the fingers were tapered and a lot of things. Scleroderma will not cause clonus and brisk reflexes either. Who knows maybe I have a few things going on but you would think it would show in testing but does not. Hopefully I will get answers soon but in Canada it is a long wait to see neurologists and reumatologists 4-6 months.

[Deb61]

After I read your first post (before Quix') and before your last post, I was thinking that this sounds an awful like scleroderma to me.  Especially with the swallowing issues. Some people, especially with diffuse systemic scleroderma, don't get the characteristic thick and tight skin on their hands or face.  Often times, the problems are with their internal organs and swallowing.  It may be worth a trip to the dermatologist to see why the color in your hands is this way.  

It may also be worthwhile to visit a neurologist.  Myasthenia gravis may cause some of the symptoms you've mentioned, too.

What does your rheumatologist say about the color of your hands and feet?  Has Raynaud's been mentioned?

Deb

[Tahiri_Veila]

I have looked and it seems like the most obvious ones have been suggested.  I really don't know where to tell you to look.  I would go to a new doctor one that hasn't seen you before and get a second opinion.  Then hopefully they can give you a referral to the specialist you need.  Keep us updated.  I am sorry I have hit only dead ends.
Tahiri

[jensequitur]

I love that when they blame your physical symptoms on anxiety or depression.  It's really depressing!  And makes me anxious.  ;-) Hah, hah...

Mama, what I've found is that when there's problems with the muscle, it manifests as paresthesia, weakness, and twitching, usually in the same general area.  But your description of the atrophy you're having is unusual with MS.

If you weren't having paresthesia, I would say that Amyotrophic Lateral Sclerosis is one possible diagnosis.  But ALS doesn't have paresthesia, as far as I can tell - just gradual loss of muscle control.  So without being a neurologist or any sort of other medical professional, my guess is some sort of neuropathy or polyneuropathy.  

You need a neuro that will look for a cause, rather than blame it on your anxiety.  I would look for somebody that will at least treat your symptoms, if not the cause.

[mamaberger]

Thank you to everyone for your suggestions. Scleroderma has hardening of the skin which I don't have. My fingers twitch like crazy and everywhere I lose muscle you can see the twitching. I have looked into scleroderma and it doesn't quite fit what I have because of the neurlogical side effects I have. I get hot and cold sensations in my skin and used to get numbness but now everywhere you touch on my body even if my son lightly touches me with his nails it feels like he is ripping my skin off. A warm bath feels like it burning my skin and anything cool on my skin feels extra cold. When I was pregnant and my symptoms worsened I had sustained clonus in both legs but after my legs got stronger they could find no clonus. I have brisk reflexes in all four limbs as well. It's all very odd symptoms. It weird how I do have the shrinking in face muscles like scleroderma but this is where I get major twitching. It was even seen by a neurologist but she blamed it on anxiey. Thanks everyone for your posts I really appreciate it.

[Quixotic1]

Hi, I'm so sorry for all that you are suffering through.  I have to say that my first thoughts were the same as Sunny's.  The description of tight, shiny skin on your hands and feet aalong with crookedness and wasting strongly suggests Scleroderma.  This is a group of autoimmune disorders that involve scarring of the skin and other connective tissues.  The fingers do take on a tapered appearance.  They feel tight and painful and wasted.  Because the skin becomes tight and hardened, the fingers often become twisted or crooked.

Scleroderma also frequently involves the digestive system and shows with difficulty swallowing and with severe GERD.

The ANA is positive in 90% or so of cases.  I don't know whether it would appear and disappear.  There is another antibody that is sometimes present called an "anti-centromere antibody."

Fatigue and joint pain is common.  What I did not see is that scleroderma causes cognitive problems, but depression is common - and possibly inevitable -with any of the autoimmune diseases.  I have only had a few patients with scleroderma and depression was a severe problem with all of them.

To research this just google "scleroderma."  Here are some images of the changes you can frequently see :

http://www.scleroderma.org/images/SD_Images/index.htm

Here is a way to find slceroderma experts:

http://www.sctc-online.org/institut.htm

I also do not think this sounds like MS, but we welcome all people who are in search of the reasons for there neurological illnesses.

Please look into this and see if it fits.  There are centers of experts around the world for this.

Quix

[jensequitur]

Chronic Inflammatory Demyelinating Polyneuropathy?

[Sunnytoday]

Hi, a quick question... this sounds like an auto-immune disease.. I will agree with that, but has anyone ever mentioned scleroderma? I only say that becuase you said "the skin on my hands and feet is discolored, thin and shiny" and it made me jerk becuase in school that is what we learned was one of the signs of it. I'm not a physician, so don't take my word on it, but do take the time to check out this link if you haven't researched it before. Some of your other symptoms may not fit with it, I do not remember what all you have... blame it on my migraine that is returning. Here is the link:

http://www.sclero.org/medical/about-sd/a-to-z.html

It's actually a link to many links about scleroderma. I hope that this is not what you have, but I just wanted to offer what I had found on the internet.

~Sunnytoday~

[jensequitur]

Your symptoms sound neurological, but they do not sound like MS.  Your atrophy of the hands indicates a problem with the cervical spinal cord - I would try to get an MRI of the neck, with and without contrast, with a high-powered MRI so they can evaluate whether you have any stenosis or atrophy of the cord.

[mamaberger]

Thanks for responding and for offering to search for me, thank-you for your kindness. Someone messaged my and was not meaning to be insulting but concerned and mentioned neurosyphilis which sounds like all of my symptoms in a nutshell. Except when I was pregnant with my son and my symptoms started just two weeks prior to pregnancy they automatically test you for syphilis as if you had it it would harm your baby. I never had symptoms of this illness but it's fits me to a tee, sensory changes, muscle wasting, dementia, personality changes etc. I think in the late stages they need to test your csf. I guess it's worth a try to mention this when I see a doctor. Although it sounds a lot like me I am thinking something autoimmune as when I was pregnant at the end I was so weak could hardly brush my hair and when my son was born it got even worse and my hands and arms got so weak i could not lift him or change his diaper then after about three weeks after delivery I started to regain my strength. It's all odd and no one can figure it out. When I was so weak a couldn't even squeeze the neuros hand or resist for the strength part they did a nerve conduction test and it was normal, I just don't understand. A trip to the Mayo may be in order except I don't want to spend a good chunk of my savings if there is nothing that could be done for me which I think is the case for a lot of neurological illness. Thanks, Mya

[Tahiri_Veila]

I am sorry to hear about your symptoms.  It does not sound like MS, from what I have heard about it.  Also usually MS is not as bad during pregnancy, and it sound like it was much worse for you.  That must have been tough.  I would definitly get into a new GP and get a second opinion, because your symptoms sound like they are rather obvious to see and shout that there is something wrong.  You also might want to try a different rheumy.  Also keep in mind that you could have fibro on top of what you have.  I know your visible symptoms do not point to fibro, but you may have fibro as well.  Just keep that in mind.  You also might have something nobody has even thought of.  I will try doing some research and see if I can find anything.  Sorry I can't help you any more.  I am not a doctor, but maybe someone else can help.
Tahiri

[mamaberger]

I had a postive ANA when I was pregnant and my symptoms were worse and now I don't have it so they just said positive ANA does not mean anything. My husband and I never saw this Gp write one note in his file so I don't know how much info he had. We started to get the feeling from what he was saying he didn't want to go against the specialists opinions it's a big boys club. The Gp told me I just have to stop looking for answers and live with my illness. It's so frustating.

[Wobbly]

sorry to hear your going through so much and can't get any answers... have all the blood test come back Neg?  Does the Rheum and Neuro know your family history?  

I'm not sure about your hand and feet being apart of MS?  to me...it sounds more like an autoimmune thing... but I'm not a Dr and can't Dx anything...??  

do you have a copy of your previous Dr file with you?  Can you get that info?  
do you have a new GP... that might have the old GP's info??  

did you have a chance to check out the "Health Pages" section on this forum...the top right hand side link...it has so much information there..

so many questions...

take care
wobbly
undx