Blotchy lower legs?

    • March 29, 2011 at 1:37 pm

      Hi — I’m an old GBS poster from back before the Forum moved to this nice new format (had severe GBS — 4 months on vent — back in 1999; largely recovered by 2001). Now I have a new — hopefully minor — problem and I hope the Forum members can share some info to help me (and perhaps others with the same problem).

      Over the last few years, the skin below my knees has become increasingly blotchy with a few small sores. Sometimes the blotches are very pronounced (bluish/purple); other times the blotches are barely visible. The blotchy skin is sometimes slightly itchy; otherwise the blotching just makes me nervous, but does not bother me.

      My internist is sure the blotching is a residual effect of the GBS — that the nerves controlling blood flow into the capillaries near the surface of the skin are screwed up causing insufficient blood flow to the skin (poor neuro capillary circulation is his term) and the insufficient blood flow, in turn, causes the skin to get bluish/purple. He says there probably isn’t anything that can be done and that hopefully it will not get serious enough to be a problem.

      My feet are often cold to the touch (although this does not bother me) and the internist says the cold-feet symptom is further evidence of poor neuro capillary circulation resulting from the GBS damage to the nerves.

      This all makes sense to me, but, although I’ve seen many posts on the Forum re GBS survivors having cold feet (or hands), I haven’t seen any posts re GBS survivors having this blotchy skin. I’m concerned that, if I’m the only one with this blotchy skin, perhaps the blotchy skin is not a residual effect of the GBS.

      [U]Has anyone experienced this blotchy-skin phenomenon, particularly on their lower legs and/or feet? If so, do you have any suggestions regarding treatment? Thanks for your help. [/U]

      John Elligers
      McLean, VA

    • Anonymous
      March 29, 2011 at 2:44 pm

      Hi John,

      Over the past few years, I’ve noticed the blotchy skin of which you speak. Um, I’m a POC (person of color) so it’s not easy to determine if the skin is blue or purple; it’s just darker. 🙂

      I assumed these were dry patches and slathered on more lotion/moisturizer. It could be another GBS residual, however, I haven’t mentioned it to any of my doctors as, unfortunately, they don’t know a lot about GBS or its residuals. I’m also part of the cold legs and feet group. Regardless of the temperature, if I get cold, it takes a few hours to defrost.

      I hope you receive information from others that can give you (us) some ideas.

      Take care,


      By the way, it’s on my lower legs. Sorry….I’m at work and was stealing a few minutes to respond.

    • March 29, 2011 at 5:54 pm

      Thanks for responding. At my wife’s suggestion, I’ve also tried skin lotion — no difference. Anyone else out there with blotchy legs post-GBS?

    • Anonymous
      March 31, 2011 at 10:02 am

      Hi, my daughter had somethign that sounds similar.
      we went to the doctor and he stated this was purpura, the blood vessels just below the skin broke (almost like a hicky..) this started out purple and then went to red, then yellow the brown, as the body reabsorbed this… (similar to the life cycle of a bruise).
      they did not hurt, but as they healed they itched.
      Dr. said with everything going on and receiving gamma that her blood vessels had had started to Leak. we are not sure what actually was the cause but if she get bit by a mosquito adn scratches it or itches too hard the result is a much smaller marking of purpura.. the initial onset was from teh knee to the ankle all the way around…

    • March 31, 2011 at 2:38 pm

      Thanks for responding — I haven’t had any IvIg or other gamma in many years, so my situation is probably different from your daughter’s. In doing searches on this Forum, I came across several threads addressing skin discoloration/bruising/irritation associated with IvIg, particularly for CIDP patients.

    • Anonymous
      March 31, 2011 at 4:59 pm


      It may be worth a visit or a mention to a neuro or rheumy. You could have symptoms of another autoimmune disorder and maybe should have some blood work done. I don’t want to frighten you, but you might want to get it checked out. A lot of people that get one autoimmune disorder tend to get another and GBS falls under the autoimmune spectrum. I had “mild” GBS or nerve inflammation, and then it turned into something else that is still undiagnosed. I have been seeing a rheumy and he always runs a lot of comprehensive blood tests. You should have your ANA, sed rate, c-reactive protein, RA factor, etc. checked. Good luck.


    • Anonymous
      March 31, 2011 at 10:38 pm

      It’s not an easy site to get to, but very useful.
      On the left index click on ‘Diabetes in Skin Disease’….while we’ve not got diabetes? Seems a lot of the nerve damages and damage processes are similar. Be sure to read the Abstact and Introduction on this page and then go to the Diabetic neuropathy aspects…tho written for docs? They ARE in a clear english and readily understood. Then look at other features on this site.. the pics are very graphic, I warn you? But, if you’ve something similar, you will KNOW it. I hope you don’t find IT!
      As others have said, Lianne and Tina… it’s not often connected, but once your read that abstract and intro? Then look at pics etc. some things can fall into place.
      Summary? Our nerves tell our vascular and lymphatic systems what to do. When ‘peripheral nerves’ are damaged? These systems don’t work as well or as efficiently. It’s akin to not knowing which part of your car to repair first?
      You do what you can with whatever guidance you can get. I hope you find good guidance somewhere! Truly!

    • April 1, 2011 at 2:43 pm

      Thanks for responding. Homeagain — I skimmed the website you suggest and it has some interesting info; I’ll go back and read it more carefully. My internist had mentioned that he thought my skin issues were similar to those of diabetics, but that the mechanism causing the blood to flow away from the surface capillaries was probably different in a GBS survivor than in a diabetes patient. My quick reading of the website suggests that diabetes can attack nerve cells, so perhaps there is more overlap between diabetes-induced skin problems and GBS-induced skin problems than the internist thought.

    • Anonymous
      April 3, 2011 at 12:24 am

      your lymphatic nervous system [which provides oils to your skin, and removes wastes from below?] is affected as it is sort of part of the sensory system.
      Simply put, if your nerves don’t work right? They give off very bad traffic signals to get things going off into the right direction. This is on top of the fact that your basic circulatory system is sort of off kilter too, because those sensory nerves aren’t telling your body when you’ve got fluid build up somewhere or are too hot or cold….
      Sooo? YES they are similar to diabetics? But more so, in several ways… checking your feet and the rest of you daily is a MUST! Because we are numb in some places, IF we injure ourselves? We mite not know until…we’ve got some big infection problem.
      I know of too many diabetics who have had to be hospitalized due to such ‘injuries’? That there is a good reason to be overly cautious in this quarter. Don’t know about you? I LIKE my toes, and fingers! I want to be as careful as possible to keep them where they are…attached.
      The doing can be at times complicated? The doing it can be simple.
      Good luck!

    • Anonymous
      April 3, 2011 at 4:30 pm

      Hi John,
      I too have had blotchy skin! It is mostly on my legs and feet, but sometimes goes to my hands and arms. I have CIDP, which affects the peripheral nerves so, my peripheral body parts are what is affected. What I get is purplish, yellow, uneven skin color. I am extremely white, since my new found respect of the sun and fear of skin cancer, so my legs rarely see the sun. This makes it very easy to notice the blotchiness and uneven skin tone. It is usually followed by temperature change in just that area of the body. I live in Miami wher the temperature is hot and the humidity is sticky. Every part of my body is hot, except for my legs, that once and a while look veiny, purple and yellow and get cold. I tried explaining this to my doctors a few times and they all looked at me like I was crazy. Unfortunately, I have become to acustomemed to this due to thi disease! One day, the Gods were shining down on me and as I was sitting at my doctors office, not only did I experience the blotchy skin and temperature difference, but I experienced it with alternating legs!!! 1 leg was red and burning up, and the other was freezing and purple! My doctor touched my legs and she was blown away!!! She told me she had never seen anything like that to that extreme in her years of practice! I told her that it happens all the time, just never in front of a doctor! I was so happy a medical provider was finally able to document it for me!! She told me that she thought (and she is not a neuro) but her best medical guess was that it was my sensory nerves acting up. Since I have both motor neuropathy and sensory neuropathy, the motor controls the movement and strength and the sensory controls the feeling, including temperature control. So, she thought it was a combination of the sensory neuropathy interfearing with my bodies temperature regulation along with circulation.
      It still happens. It’s been a problem for about 4 years and its just getting worse. Now it is not just the legs getting blotchy, purple and cold, but I am also getting flushed, got flashes and completely red on my chest, face and ears. I am 35 years old, so it is not menopause (I hope)! The good thing is that since it is happening more often, my neuro has witnessed it, so has my phi therapist and many other providers.
      Although there aren’t any answers as to what can fix it, do know that it is not in your head as I was made to feel for so long! You are also not alone in this! I can tell you that I did find some relief with IVIG.
      I will say that once my neurologist saw it, years after my complaints fell on deaf ears, he did say that it was my sensory neuropathy piggy backing on a cardiac issue that he had no clue about because as he said made it clear to me, he is not a cardiologist. My heart sounds fine, I do have palpitations and arrhythmia’s and eventually will be seeing a cardiologist and/or pulmonologist to follow up on this. Right now, I am seeing all the doctors that I can emotionally and physically handle. Every doctors appointment and hospitalization is exhausting to me, so little by little, right. Like the saying goes “How do you eat an elephant? One piece at a time”. I am seeing as many doctors I can handle at this moment. Eventually, once I have eaten the trunk of this CIDP elephant, I will start in a leg (cardiologist and pulmonary). I need to keep my sanity as best I can.
      Best of luck to you,

    • April 3, 2011 at 10:25 pm

      I assume you have been tested for diabetes? Iff so and you are not, certain medications also can cause these symptoms. for instance, lyrica can make you swell get blotchy and then the skin splits and sores develop. Many meds can cause these symptoms especially if sun is involved in a few. Alos, does it ever affect your hands, it could be a syndrome called raynauds syndrome, it involves the skin being cold to the touch, bluish purple and blotchy. check it out

    • April 5, 2011 at 9:12 pm

      Dawn Kevies mom — Have been tested for diabetes and am not taking any unusual meds, but I will check the possible side effects on the few meds I am taking. A good idea. No rash on my hands, but they sometimes get cold (common GBS side-effect per this Forum). I talked to my internist about Raynaud’s and he said there’s some overlap, but thought mine was a different problem (although from my own internet research, it looks like Raynaud’s isn’t really a disease but more of a syndrome — a collection of symptoms + no particular treatment).

      Guskno — Haven’t had the rash anywhere except below my knees, but the rash didn’t start (or at least I didn’t notice it) until several years after my GBS and it seems to slowly get worse. I’m an ordinary GBS, not a CIDP, so this may limit the effect to the lower legs where the nerve stimuli have the furthest to go and therefore where the cumulative effect of the GBS damage screws up the nerve action the most. Good luck.

    • Anonymous
      May 14, 2011 at 8:21 pm

      [QUOTE=John Elligers]Thanks for responding. At my wife’s suggestion, I’ve also tried skin lotion — no difference. Anyone else out there with blotchy legs post-GBS?[/QUOTE]
      Yes my feet and legs are as you say.Very cold and blotchy.We need to remember while critical and with feeding tube i also had diabetes now a:mad: lmost 4 years i am not diabetic but feet and legs look funny and spotted and sometimes bluish.I am going to talk to Doc this month .Will let you know.I can say is if i try to walk more and exercise more it does help alittle.Cold weather makes it worse.Hope this helps.